Saturday, December 19, 2009

Two Links

I gave a little talk Wednesday about the ASH Converence to our local support group.  Here is a link to a PDF document of the slides:  ASH 2009.pdf.

The National Cancer Institute Bulletin this month is about nutrition.  Actually about supplements, but a key point in the video is that "about 30% of our cancers relate to our dietary habits."

More about ASH coming up.

Potroasted bison with avocado, organic grapes, organic carrots, organic lettuce, organic wine vinegar, a little brie:

Saturday, December 12, 2009

No More DEX!

YAY! After 23 cycles of pomalidomide (CC-4047, Actimid) with dexamethasone (DEX), I've taken my last DEX tablet, at least for a while. Recently I've only been taking 4 mg per week anyway, which probably doesn't do a lot of good but certainly seems to induce most of the same side effects as a larger dose.

Thursday's results (December 10) again show the myeloma to be stable. M-Spike, IgG, and light chains all about the same as 28 days ago. Stable is good - my myeloma and I are at a standoff. Let's hope that continues without the DEX. More actual test results are listed below and from the righthand panel.


No noticeable improvement, so clearly the ashwagandha isn't helping much. Of course it's possible that the myeloma has begun to figure out the pomalidomide, so M-spike would be higher without the ashwagandha, but I doubt it.

DEX Replacement:

First of all, maybe the DEX doesn't need to be replaced. But I'll see if I can find something that will help the pomalidomide, so that I don't have to go back on DEX. In my own earlier efforts to find a treatment, I had thought that nothing did much good, because M-spike never seemed to go down or even stop climbing. Looking back, though, I can see that IgG did stop climbing for a while, even if M-spike didn't seem to, when I was on my "kitchen sink" regimen, taking low-dose naltrexone (LDN) with curcumin, quercetin, resveratrol, and EGCG. The truth is that M-spike can't actually climb much when IgG is stable, so M-spike was probably more stable than I thought back then. Now, what would happen if I replaced the DEX with the kitchen sink stuff?

Oh, that's right, LDN is a prescription, so I'd need to discuss that with Dr L and I doubt it would be permitted as part of the study. I need a substitute. LDN is thought to work by causing the body to release endorphins which help somehow, possibly just by inducing a very sound sleep. Well, ashwagandha does that too, at least it seems to put me to sleep. So I guess I'll keep taking the ashwagandha at bedtime. Here's the new regimen, to be merged in with the other supplements that I take:


If those don't seem to make a difference after a cycle or two, I may try resveratrol and EGCG next. We'll see. Meantime I have to order more of the supplements. The full updated supplement regimen will be available from a link in the right-hand panel soon.

Wild Alaskan Salmon Oil:

We recently spotted this product on the shelves at Costco in Maplewood, MN: Wild Alaskan Salmon Oil. It is made by a company calling itself Alaska Protein Recovery, LLC, and purports to be (1) Free of mercury and other heavy metal pollutants (because Alaskan waters are low in pollution), (2) from a certified sustainable wild-salmon fishery, and (3) "proud to be made in the USA" (i.e. not from China). Two 1000-mg capsules supply 600 mg of omega fatty acids, including DHA 220 mg and EPA 180 mg. I must admit that I don't know if that is good or not - I haven't studied fish oils. The flax oil that I already take shows different fatty acids on its label, so comparison is difficult. I have been taking two flax oil capsules per day, and will now add two salmon oil capsules. Perhaps by the time I've used up the 180 salmon oil capsules I'll know whether this was a good idea or not.

Some current test results:

Sep 17
Oct 15
Nov 12
Dec 10
M-spike g/dL
Best tumor measure
IgG mg/dL
Variation is normal
L FLC mg/dL
L Free light chains
Calcium mg/dL
Below 10.2 is best
Creat mg/dL
Kidney, lower is better
HGB g/dL
Hemoglobin, normal
Red cell count, low
White cells, normal

Related links:

My Myeloma
A discussion of my myeloma, not very technical.
My Treatment History
Not technical.
My Test Charts
Graphic displays of several key test results over time.
My Test Result Table
Best with a wide browser window. Very "technical."

More ASH reports coming up.

Wednesday, December 9, 2009

Our Voices Matter

I've been a mighty lucky guy throughout my myeloma voyage, at least so far. I had a great doctor watching me through MGUS and smoldering, and then was lucky to get a wonderful Mayo doctor who used an PET scan to determine that I was symptomatic BEFORE any bones broke, and got me on a trial of pomalidomide, which has kept me stable (and running!) for the better part of two years. And my insurance has been good.

Others are not so lucky, and I meet many of them in our local Twin Cities support groups. Many have broken bones or other organ damage because of poor diagnosis, or have been on every approved and available treatment including autologous and allogenic stem cell transplants, and don't know what to do next. Many have struggled with their insurance companies or with Medicare to get the treatment that their doctor advises, and some have chosen a less-preferred treatment because insurance would not cover the preferred one.
International Myeloma Foundation
The International Myeloma Foundation (IMF) has joined with the Myelodysplastic Syndrome Foundation and the Tackle Cancer Foundation to create a Cancer Patient Statement of Principles. Hover over any one for a more complete description of that principle, or click it to download the full document from an IMF web page:
These seem to be common-sense fundamentals, but we don't have them now. Example: Insurance may pay for Velcade, because it is administered as an IV drip in a hospital or clinic setting. But insurance may not pay for Revlimid, because it is a prescription. Therefore the patient may choose Velcade and drive to a hospital several times a month, possibly hundreds of miles, even though the doctor might believe that Revlimid would have been the better treatment for this patient.

Example 2: I know several people now who have died from myeloma which progressed because nothing worked any longer. I wish those friends could have had the pomalidomide that I am taking, or the carfilzomib that is also on the horizon. Who knows - they might still be with us.

Needless to say I believe strongly in these principles. They make a lot of sense to a cancer patient. So what do we do about it? Lobby! Right now health care legislation is big news, with large issues like "how will we pay for it all" taking up most of the air. Nevertheless, our issues will require new legislation. There are congressmen on both sides of the aisle willing to get behind a bill, or perhaps an amendment, when the time is right. Whether this happens as a part of a huge new health care bill or as a follow-up bill, the IMF needs support for its lobbying effort in Washington.

If you agree with these principles, I encourage you take action, and to send an email to your representative and your senators. The IMF has a web page which makes it easy to do that and to learn more about pending legislation and even to sign up to be notified about changes.

Thank you!

More ASH news coming up, stay tuned. -- Don

Sunday, December 6, 2009

ASH Begins

Practical Approaches in Myeloma: Optimal Management of Newly Diagnosed and Relapsed/Refractory Disease.

I met a woman Friday whose myeloma was diagnosed in 2008, and who was told by two different Washington D.C. hematologists that she should get her affairs in order because she didn't have long to live. Both of those doctors were wrong - she is very alive and doing much better today, thank you, because she learned better online and found doctors who know more than those two. The American Society of Hematology (ASH) Conference began Friday night with a "Satellite Session" presented by the International Myeloma Foundation (IMF), designed to help doctors understand diagnosis and treatment of myeloma at all stages. It was a primer aimed at the practitioner who needs a refresher course in "what's current." Four different doctors gave presentations, with Dr. Durie of the IMF acting as chair. A doctor who attended that session would not make the mistakes that the two D.C. doctors made.

Dr. Vicent Rajkumar of Mayo Clinic in Rochester spoke first about diagnosis, explaining the comparative benefits of immunofixation, serum protein electrophoresis, and free light chain analysis. We need all three because myeloma is not a single disease, and can sometimes hide from any one of them but not from all. Further, we may need both FISH and cytogenetic studies to examine the particular risk factors for any particular patient.

He mentioned that people with monoclonal gammopathy of undetermined significance (MGUS) have a 1% per year probability of progressing to myeloma, whereas those with smoldering myeloma have a 10% probability of progressing to symptomatic myeloma each year. He also thinks that neuropathy may be treated as another "C.R.A.B." (calcium, renal, anemia, bone) symptom that can herald the onset of Stage I myeloma, particularly when the neuropathy cannot be attributed to any cause other than the myeloma.

Dr. Phillippe Moreau, of Nantes, France, described current and new treatments for newly-diagnosed patients, including many different combinations of drugs. The audience, mostly hematologists, was asked whether autologous stem-cell transplant (ASCT) was the "standard of care" for newly diagnosed patients, and 75% said yes. Dr. Moreau's studies in Europe, however, seem to be showing that combinations of new drugs can do as well at achieving "Very Good partial Responses" (VGPR) or Complete Responses (CR), and that those responses do hold up to provide time-to-progression and overall survival comparable with transplants. For high-risk patients, however, the data is not available and ASCT may be the safest choice.

If a transplant is contemplated, it appears to be beneficial to use the drug combinations first anyway, because achievement of VGPR or CR before the transplant improves the outcome of the transplant. The question was asked, "if a patient preparing for a transplant achieves a CR, do we go ahead with the transplant anyway?" The doctors at the speakers' table did not agree on the answer to that question. If my opinion counts for anything, I personally would never embark on a transplant having already achieved CR or even VGPR. Go on maintenance and save the transplant in case it's really needed some day.

One of Dr. Moreau's studies has shown that a reduced Velcade regimen with a reduced dexamethasone (DEX) regimen can be effective but with much less neuropathy.

Consolidation is used after a major treatment such as a transplant. It is an additional drug regimen designed to improve the transplant outcome and bring the patient to a CR or at least VGPR.

Maintenance is used after a transplant or other major treatment, to maintain the good result achieved there. It DOES improve the overall survival. According to Dr. Moreau, that question is answered.

In answer to a question from the audience, Dr. Rajkumar said that there is no data showing that an early transplant improves a person's survival compared with a later transplant. This question is under study though.

Dr. Mario Boccadoro of Turin, Italy, described the treatment options for patients aged 65 and beyond, in Europe. In the USA we do not make a hard cutoff at age 65, but Europe does. He mentioned melphalan a lot, an "alkylating agents" which works by messing up the cell's DNA and perhaps initiating other cancers that will appear years later. Most of the regimens that he mentioned for us older folks have been around for years. He did mention one study that included Revlimid with the melphalan and DEX, and preliminary results looked good.

OF COURSE it looked good! And why shouldn't we ancients get the benefit of the novel therapies, just as the younger set does?  Duh.

One interesting remark by Dr Boccadoro: In one of the studies, the control group had a better overall survival than the study group, despite the clear benefits of the study regimen. The explanation was that the patients in the control group were free to change regimens and do whatever was necessary to survive, whereas, apparently, the study group was not. I think I'll do my very best to opt OUT of a study like that.

Dr. Robert Z. Orlowski, M. D. Anderson Cancer Center, presented the standard of care for relapsed and refractory patients. "Refractory" means that current treatments have stopped working, where "relapsed" means that a patient had achieved a response but the tumor burden has started to increase again. He suggested these treatments, in order: (1) Something that worked before, whatever that might be, (2) Velcade alone or with DEX, (3) Velcade with Doxil, and (4) Add DEX or even an alkylating agent (melphalan or cyclophosphamide).

He also spoke well of carfilzomib, the new proteasome inhibitor, under study at M. D. Anderson. It causes much less neuropathy than does Velcade, and is even effective for 30% of the patients who are refractory to Velcade. He also mentioned two more drugs, presently approved, which do not have specific anti-myeloma activity by themselves but which can improve the efficacy of another drug, such as Velcade.

Bison sloppy-joe on organic corn chips, with macadamia nuts, cheese, and mixed veggies. 

Wednesday, November 25, 2009

Mayo Clinic Cycle 22, Still Stable

I've had trouble sitting down to write this post. The Mayo visit was November 12, almost two weeks ago. Plenty to say, but everything else intervenes, and I STILL don't have all the leaves picked up off the lawn.

Test Results:

At the end of Cycle 22 of the Mayo Clinic trial of pomalidomide with dexamethasone (DEX), no change in M-spike. Still 0.9 g/dL, which isn't bad. In fact the lab said it was 0.86 (verbal), but they round up for the written report because the test really isn't accurate enough to support two digits past the decimal. M-spike has hovered between 1.1 and 0.8 g/dL since June of 2008. IgG is up a little, but Lambda free light chains are down a little and the K/L ratio is up (good). Stable!

Calcium is back where it should be, and none of the other tests raise any eyebrows. Enough about test results.


I've taken 225 mg of Sensoril brand ashwagandha every evening for the entire cycle. With no discernible change in test results, it's hard to say that the ashwaghanda has done anything, except help with a good night's sleep. Maybe I should double the dose. Instead, though, I'm now taking the pomalidomide at night, with the ashwagandha, rather than in the morning. That may make a difference, maybe not.

Peripheral Neuropathy:

Some months ago, after 15 cycles of pomalidomide, I noticed some numbness in the soles of my feet and a little tingling in my thumbs. No pain. I immediately did some research and started a new treatment for it, and the neuropathy stabilized. It hasn't changed much now in several months. I do not know whether my treatment is helping to stabilize it, because I haven't stopped the treatment to find out, but for what it's worth, here it is:

Daily dosage:
A good daily vitamin  
A good multi-B vitamin  
Vitamin B6

Vitamin B12 sublingual
Vitamin E
Alpha Lipoic Acid  
Flax Seed Oil

Where it's necessary to take more than one capsule or tablet, I divide the dosage in two, taking half with breakfast and half with dinner.

I also believe in keeping the "peripherals" warm, because healing works far better when tissue is at body temperature. I wear wool socks most of the time, even in bed, and cotton gloves in bed. In addition, we eat very well (nothing that doesn't contribute to health), and get good exercise.

Things that are recommended (somewhere) but which I do not yet do:
  • Topical emollient creams, with cocoa butter and spearmint, menthol, or even capsaicin, to stimulate nerves.
  • Evening primrose oil supplement.
  • "Magnesium Oil."
  • L-Glutamine, up to 30 grams daily. I have it on hand, just don't find it convenient to take it.
  • Pickle juice can work for cramps, maybe for neuropathy? One friend swears by it.
  • Acupuncture.
  • Transcutaneous electrical nerve stimulation (TENS). May have a temporary benefit.
  • I don't smoke, but if I did I should stop! Duh.
  • Biofeedback.
  • Infrared heat.
  • There are various gizmos and treatments advertised on the web. Buyer beware.
Related links:

My Myeloma
A discussion of my myeloma, not very technical.
My Treatment History
Not technical.
My Test Charts
Graphic displays of several key test results over time.
My Test Result Table
Best with a wide browser window. Very "technical."

Some current test results:

Aug 20
Sep 17
Oct 15
Nov 12
M-spike g/dL
Best tumor measure
IgG mg/dL
Variation is normal
L FLC mg/dL
L Free light chains
Calcium mg/dL
Below 10.2 is best
Creat mg/dL
Kidney, lower is better
HGB g/dL
Hemoglobin, normal
Red cell count, low
White cells, normal

Discussion with Dr. L:
  • She finished a recent marathon in a very nice time, despite having to wear a lot of clothing to keep warm.
  • She thinks that my running inspires hers. As for me, I'm very proud of her.
  • In answer to my question, yes, get a pneumonia shot.
  • If ashwagandha didn't help in the first month, maybe in another month.
  • There is a study of an oral form of Velcade.
  • There is also a study of a drug currently in use for renal cancer.
  • The pomalidomide trial is now open for people who have failed both Revlimid and Velcade.
American Society of Hematology (ASH):

Apparently it is unusual for a myelomiac to be able to run marathons. Thus far I have been lucky enough to avoid broken bones, and I've done eight marathons this year. The International Myeloma Foundation (IMF) has invited me to attend the annual ASH Conference, December 4-7, as an advocate for new treatments like pomalidomide. I will try to blog about it in real time, and will certainly report on it afterward.

Don finishing the OBX Marathon November 8

Friday, October 23, 2009


Mayo Clinic Visit Thursday, October 15, 2009, end of Cycle 21

Blood test results: M-Spike remained the same at 0.9 g/dL, IgG dropped slightly from 1070 to 1020 mg/dL, and Lambda light chains increased slightly from 2.54 to 2.68 mg/dL. These results don't really show a trend one way or another. "Stable" is the word.

Except: calcium is up from 9.9 to 10.3 mg/dL, above the reference range, and we don't know why. High calcium in the blood can indicate that bone damage is occurring. It went that high once before, though, and dropped right back down a month later. Hopefully next month's value will be back within range. I will skip my calcium supplements for a day or two before next month's tests, in case that makes a difference.

Of course I'm still concerned about the longer term, when the Phase II trial of pomalidomide with dexamethasone (DEX) eventually fails for me and a different, less-agreeable treatment will be required. Two months ago we reduced my DEX dosage from 8 to 4 mg once weekly - perhaps that was a mistake. Unfortunately, though, under the terms of the study, DEX can only be decreased and never increased, so if I want to continue taking pomalidomide I will continue taking 4 mg or less of DEX. Pomalidomide is good stuff - I DO want to continue on it for as long as possible.


The study doesn't say much about supplements. Margaret has recently blogged about ashwagandha, also called "withania somnifera," a shrub from India and nearby countries. The root is widely used as a medication in that region, and in alternative medicine in other parts of the world. Margaret took ashwagandha herself, and saw her IgG drop 25% and M-Spike drop 10% over a period of several months. She has written several posts about ashwagandha, all worth reading. Because of her apparent success, I have begun taking ashwagandha in a modest dosage. I ordered the patented Sensoril brand, packaged in capsules by Jarrow. I take one 225-mg capsule daily, the amount suggested on the bottle, at bedtime because it also induces a restful sleep.

In addition, I have added 100 mg of ordinary vitamin B6 to my regimen as an additional treatment for the mild neuropathy that is induced by the pomalidomide, and doubled the supplements for thyroid. The entire daily supplement regimen is available from a link in the right-hand panel.

Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wiiide browser window. Very "technical."

Some recent test results:

Test Jul 23   Aug 20   Sep 17   Oct 15   Remarks
M-spike g/dL 0.8 0.8 0.9 0.9 Best tumor measure
IgG mg/dL 1010 979 1070 1020 Variation is normal
L FLC mg/dL 1.95 2.07 2.54 2.68 L Free light chains
Calcium mg/dL 9.6 9.7 10.0 10.3 Below 10.2 is best
Creat mg/dL 1.0 1.1 1.0 1.0 Kidney, lower is better
HGB g/dL 14.0 14.8 14.5 15.0 Hemoglobin, normal
RBC M/uL 3.93 4.13 4.01 4.21 Red cell count, low
WBC K/uL 5.6 3.9 3.7 4.2 White cells, normal

Discussion with Dr. KDS:

  • Peripheral neuropathy from the pomalidomide has not changed much in this cycle. Still some numbness in the bottoms of my feet and in my thumbs. There is also a little tingling but no pain. The "tickle" sensation in my feet, sensitivity to light touch, might actually have improved somewhat, but the sensitivity to pressure has definitely not improved.
  • Many myelomiacs get shingles, because of compromised immune systems. I'd rather not, thank you. So I asked Dr. KDS about the shingles vaccine:
    • It is a live-virus vaccine, and not recommended for people who are immunocompromised; but
    • I don't get sick much - no empirical evidence that my immune system actually IS compromised, but
    • She pointed out that IgA, IgG, and IgM are important parts of the immune system, and in my case both IgA & IgM are at very low levels;
    • Further, if we subtract the monoclonal (worthless) M-Spike component of IgG from the total IgG, the remaining "good" IgG is also well below normal; so
    • I guess I really do have a compromised immune system. Not enough immunoglobulin goblins. **
    • Dr. KDS knows of a case where an immuno-compromised patient actually DID get shingles from the vaccine. Ouch.
    • I suggested using the killed-virus chicken-pox vaccine off-label as a shingles vaccine, but don't recall her response. It wasn't positive.
KDS on flu vaccines for myelomiacs, same advice as last month:
  • Get the 2009 H1N1 vaccine as soon as it is available to me. I am not in one of the highest-priority groups.
  • Get the seasonal flu vaccine when it is available to me.
Don's thoughts on flu vaccines for myelomiacs (Dr. KDS is not implicated in the following content :-)):
  • Seasonal Vaccine:
    • So far, the CDC is not seeing much seasonal flu. In their latest report, almost all of the viruse samples submitted to them in the week Oct 4-10 were found to be 2009 H1N1.
    • Therefore, we need not rush to get the seasonal vaccine, because there isn't much risk of encountering the virus yet. However:
      • The seasonal flu is at least as deadly as 2009 H1N1;
      • Tens of thousands of people DIE from it every year in the USA alone; and
      • Those of us with compromised immune systems are especially at risk; so
      • We definitely should get it well before the seasonal flu peak arrives. The past three seasons saw minor peaks around Christmas with the major peak in February.
  • 2009 H1N1 Vaccine:
    • Availability may be spotty because of the priority system, which is applied differently in different places.
    • Get it as soon as it is available, because the VIRUS IS AMONG US! Rampant in some schools.
    • In the meantime, we might be well advised to stay away from groups of people, especially young people.
    • Some doctors say that the vaccine might not do much good anyway, because compromised immune systems can't muster a proper response, but
    • To me that sounds like an excuse and not a reason. If it "might not" do much good then it also "might" do some good, and that's enough for me.
    • That same excuse could be used for skipping the seasonal flu vaccine, and no doctor suggests that.
    • I have not heard of any downside of the H1N1 vaccine, other than the rare problems that can occur with any flu vaccine. If you have heard otherwise, please comment.
We three have some airplane flights coming up, and have even talked about wearing medical masks in that wheezy, sneezy, huddled mass of humanity. We'll see!

** Halloween humor

I ate that
Salad as dinner.

Saturday, September 19, 2009

Mayo Clinic Visit Thursday, September 17, 2009, end of Cycle 20

Every treatment for myeloma seems to fail eventually. Somehow the cancer evolves, and the M-spike starts to climb again. On this Phase II trial of pomalidomide with dexamethasone (DEX), M-spike is checked every 28 days. It had been stable or dropping in recent months, but this time it went up, from 0.8 to 0.9 g/dL. Furthermore, this appears to be a real change, because IgG also went up 9%, from 979 to 1070 mg/dL, the highest level since February. Lambda light chains increased too.

But the news isn't quite as scary as it sounds. First, a small increase in M-spike doesn't necessarily mean that the bottom has been reached - we have seen M-spike go up before and then come back down again. It's happened twice already this year. Second, the increase in IgG could be due to an immune-system response to some sub-clinical invader in my body. In fact this seems fairly likely, because my white count and neutrophils are up slightly from last month and eosinophils are through the roof. Something may be going on besides myeloma at the moment.

Bottom lines:
  • I'll have to wait another month to see if M-spike is really turning upward again. I sure hope not - it would be wonderful to get a nice, long ride from pomalidomide, because the drug regimen is relatively easy to take. When it fails, I will no doubt need to switch to something with more side effects.
  • This uptick in M-spike coincides exactly with a reduction in the DEX dosage from 8 mg to 4 mg once weekly. So my hopes of going off DEX in the upcoming cycle are null and void. In another 28 days we'll see.
Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Some recent test results:

Test Jun 25   Jul 23   Aug 20   Sep 17  Remarks
M-spike g/dL 0.9 0.8 0.8 0.9 Best tumor measure
IgG mg/dL 1010 1010 979 1070 Variation is normal
L FLC mg/dL 2.63 1.95 2.07 2.54 L Free light chains
Calcium mg/dL 9.6 9.7 10.0 9.9 Below 10.2 is best
Creat mg/dL 1.0 1.1 1.0 1.1 Kidney, lower is better
HGB g/dL 14.0 14.8 14.5 14.7 Hemoglobin, normal
RBC M/uL 3.93 4.13 4.01 4.08 Red cell count, low
WBC K/uL 5.6 3.9 3.7 4.1 White cells, normal

Discussion with Dr. KDS:

  • Peripheral neuropathy from the pomalidomide might be a little worse. It measures the same, but may have increased in areas that I don't measure, such as the backs of my hands. It does not interfere in my lifestyle in any way. There is no sensation from it unless I'm stepping on my feet.
  • There are no red bruise marks on my arms this time. Did the reduction to 4 mg DEX make my skin less sensitive to bruising?
  • I'm probably not getting slower (running) any more - maybe a little faster, though that may be psychological.
  • Wants me to stay on the current 4 mg dosage of DEX for at least 2 cycles before discontinuing it. So at least one more.
  • DEX can cause steroid-induced myopathy, but my modest reduction in muscle capacity does not qualify.
  • Muscle wasting is probably reversible if DEX can ever be discontinued.
  • There is some risk of avascular necrosis of the hip with long-term DEX usage, but she can't quantify it. Balance that unknown risk against the other unknown risk of dying sooner from myeloma. Yikes.
KDS on Flu Vaccine:
  • Get the 2009 H1N1 vaccine when it is available to people in my risk stratum. Immuno-compromised old people are at the top of the "second tier."
  • According to the CDC (I looked this up): First tier is pregnant women, then health care workers, then all people age 6 months to 24 years, then people age 25-64 who have health conditions which put them at extra risk. Those first-tier groups comprise about half the population!
  • Those of us who are over 64 probably have some immunity already, so we go later, even if we are immuno-compromised.
  • Get the seasonal flu vaccine no later than November, but maybe sooner if the "regular" flu season (ignoring 2009 H1N1) seems to be peaking early.
  • The two vaccines can be taken on the same day.
  • Here is a link to the CDC 2009 H1N1 Flu Page.
  • Here is a link to the CDC Weekly Update on Seasonal Flu.
My own flu shot advice: Keep in mind that I am an engineer and not a doctor, so feel free to IGNORE THIS ADVICE: Be sure to get the seasonal flu shot, because it may be at least as important as the 2009 H1N1 shot. Tens of thousands of people die every year from seasonal flu, especially immuno-compromised people.

Monday, September 14, 2009

MMRF Race for Research 5k Run/Walk

Jim & Don at the race Sunday, September 27, 2009, start time 9:00 am, come early.

The Multiple Myeloma Research Foundation (MMRF) holds an annual 5k run/walk at Lake Phalen Park in St Paul, Minnesota. It is a fun event which helps raise money for myeloma research, $120 million and counting.

Click HERE and then click "Register as an Individual" or "Register as a Family" on the left-hand panel.


Sunday, August 30, 2009

IMF Patient & Family Seminar

Friday, August 28, and Saturday, August 29:

The International Myeloma Foundation (IMF) Patient & Family Seminar was interesting and information-packed, to say the least. We heard doctors from all around the country discuss topics like Ask the Expert, Managing Side Effects, Frontline Therapy, Role of Transplant, Bone Disease, and Approaches to Relapse. I think that about 100 of us myelomiacs attended, many with their caregivers. I've been dealing with myeloma for six years now, so a lot of the information was not new, but here are a few things that I learned, or perhaps re-learned:

  • It appears to make little difference in overall time of survival whether the transplant is done early or late, as long as stem cells are collected early before the bone marrow gets all beat up. A current Dana-Farber trial may clarify this further.
  • More transplants are done for myeloma than for any other disease.
  • The mortality rate for a single autologous transplant is less than 1%.
  • Revlimid can decrease the yield of a later stem-cell collection.
  • Medicare wil pay for one transplant up to age 76.
New Treatments & Tests:
  • Three- and four-drug combinations can produce very good initial responses, but it's not yet clear what happens if and when the combo fails. Will the individual drugs have any impact then?
  • Carfilzomib, the new proteazome inhibitor, is much less apt to cause neuropathy than is Velcade. Currently available only in trials.
  • Denosumab is a new monoclonal antibody with the potential to help treat osteoporosis and repair bone damage. It may replace Aredia and Zometa in some cases. Currently available only in trials.
  • Pomalidomide, the new thalidomide analogue, is succeeding in its Phase II trial and is now scheduled for a Phase III trial in 2010. Only available in trials.
  • A new "power needle" for bone marrow biopsies has been approved by the FDA. When manufacturing problems are overcome and it becomes available, it will make biopsies quicker and less bothersome.
  • Myeloma causes bone damage in about 80% of patients, but not in the other 20%. This is unrelated to the aggressiveness of the myeloma. As it happened, a survey of attendees showed that 80% of us had bone disease.
  • Aredia and Zometa can eventually saturate the bones with bisphosphonate, and the half-life is 10 years, so therapy should be cut way back.
  • There is a risk of necrosis of the hip joint, and perhaps other joints, with prolonged dexamethasone use, especially with concurrent bisphosphonates. This is a serious problem if it occurs. The risk of occurrence is low, but I'm thinking I've maybe had about enough DEX.
Other Stuff:
  • Mayo Clinic in Arizona still uses high-dose dexamethasone with Revlimid or Velcade for the first two cycles, to get a rapid response. Often a rapid response is important for patients who have recurring disease.
  • Neuropathy from Velcade may be painful, whereas neuropathy from thalidomide or Revlimid is more likely to present as numbness.
  • Velcade neuropathy is likely to improve if treatment stops, though, whereas neuropathy from thalidomide usually does not.
  • Ibuprofen can defeat some of the anti-clotting benefit of aspirin. Oops.
  • "Hemonc" is short for hematologist/oncologist. Maybe I'll try that at Mayo, see if it flies.
  • Diet is important. Dr Durie's advice: (1) Don't eat anything that your grandmother wouldn't recognize, and (2) Shop around the edges of the supermarket.
  • There seemed to be a growing consensus that myeloma can be caused by benzene and various pasticides, even herbicides.
  • Two attendees reported that they were diagnosed with myeloma shortly after a significant weight loss. Dr Durie pointed out that toxins are stored in body fat, and may flood the body when fat is lost.
Anything that I should add?

Sunday's breakfast
Sunday's breakfast. There is oatmeal under there somewhere.

Saturday, August 22, 2009

More Great News

Mayo Clinic Visit Thursday, August 20, 2009, end of Cycle 19

Pomalidomide works! At the end of the 19th 28-day cycle on the Pomalidomide / Dexamethasone Phase II trial my M-Spike is 0.8 g/dL, as low as it has ever been, IgG is 979 mg/dL, below 1000 for the first time ever, and neuropathy caused by the pomalidomide (CC-4047) is easily tolerated and has not increased in two months. No big breakthrough this month, just more evidence of a continuously stable or declining tumor burden. I'll take it!

Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Here are a few of the latest test results:

Test May 28   Jun 25   Jul 23   Aug 20   Remarks
M-spike g/dL 0.9 0.9 0.8 0.8 Best tumor measure
IgG mg/dL 1030 1010 1010 979 Variation is normal
L FLC mg/dL 2.60 2.63 1.95 2.07 L Free light chains
Calcium mg/dL 10.0 9.6 9.7 10.0 Below 10.2 is best
Creat mg/dL 1.0 1.0 1.1 1.0 Kidney, lower is better
HGB g/dL 14.4 14.0 14.8 14.5 Hemoglobin, normal
RBC M/uL 4.06 3.93 4.13 4.01 Red cell count, low
WBC K/uL 4.0 5.6 3.9 3.7 White cells, normal


Discussion with Dr KDS:
  • My neuropathy has not become worse in the last two or three months. It reached a level where the balls and heels of both feet are partially numb, along with one thumb, and then it stopped advancing. It's quite livable, barely noticeable most of the time.
  • I've lost four pounds in the past two months. Maybe. If so, it would be a very good thing.
  • I have the usual litany of dexamethasone (DEX) complaints:
    • Thin, aged-looking skin, easily bruised,
    • Slow healing of wounds,
    • Slow running - muscles wasted, and
    • A new complaint: Sleep is hard to come by the night after "DEX day."
  • I have been taking 8 mg of DEX once per week, and that will be reduced to 4 mg from now forward, by agreement of Dr L, Dr KDS, and myself.
  • The next lower level of DEX on this Phase II Pomalidomide trial, after 4 mg, is NONE. I like the sound of that. Say it again: NO DEX!
  • I've been on DEX for 18 months now. If I were NOT on a trial, Dr L and Dr KDS would probably have taken me off DEX by now, she said, because of its many negative side effects. The trial does not allow a participant to go back on DEX, however, so they haven't moved me off quite as fast.
  • Soon, though, I hope. Life is wonderful, considering the alternative, and I've had far fewer symptoms than most from myeloma and its treatments, but assuming that the numbers will remain stable I'd love to get some running speed back. What a treat that would be.
  • I asked what additional long-term DEX effects I should watch for. Her response was "myopathy," which basically means weakening of muscles. In this case I think we're talking about skeletal muscles, and it's certainly happening already, as demonstrated by the loss of running speed.
  • My blood pressure was excellent this morning, 123/66, but pulse rate was only 39, even though I had just walked in to the exam room and sat down. She seemed unconcerned - I have a history of heart rates in the 40's because of the running.
  • How low is too low? I suspect that my heart rate goes considerably lower when I'm dropping off to sleep. Seems like it does.
  • We both believe the low HR to be an effect of the pomalidomide, not the DEX. It seems to reduce my HR at the high end, too, limiting my top running speed in shorter, high-energy races. Going off DEX wouldn't help that.
  • Most people who have been on the trial for this long have had their pomalidomide regimen reduced to 21 out of each 28 days, rather than every day. In most cases this is done because the person's neutrophil count or white-blood-cell count (WBC) has dropped below acceptable threshholds. I still take it every day.
  • My neutrophils are 1.45 K/uL, about as low as we have seen them, but still well above the threshhold. Ditto my WBC. They may be a little lower than usual simply because I haven't recently been exposed to a threat.
  • Or maybe not. Platelets are low too, at 167 K/uL, though they also have been as low in the past. All three of these numbers could be depressed somewhat by the pomalidomide. That does happen to other people, and time will tell.
For this last cycle I took the pomalidomide in the morning, as often as I remembered to do it then, before eating anything at all. I thought that it might have the most impact if taken on an empty stomach. If so, it didn't seem to make a very big difference. Nevertheless, I liked that and will continue doing it that way for the next cycle. DEX will be taken with Sunday dinner, as it was during this cycle.

Yummy breakfast
Breakfast after a 5-mile run. Oatmeal below, most things are organic including the globs of yogurt.

Friday, July 24, 2009

Pomalidomide Is Still Working

Mayo Clinic Visit Thursday, July 23, 2009, end of Cycle 18:

I started on the Mayo Clinic phase-II trial of pomalidomide, then called CC-4047, almost a year and a half ago. My M-spike, a measurement of proteins from the malignant cells, dropped from 2.7 down to 1.1 g/dL within four 28-day "cycles." Since then it has slid a little more, mostly hovering between 1.0 and 0.9. Today it was 0.8 g/dL. Whoopee! Down is always good. It has been down to 0.8 once before. Dr L put a little smiley face on the results printout, next to M-spike.

So is this a real downward change in the M-spike or just a variation in the test itself? M-spike is a notoriously variable test. Well, Immunoglobulin G (IgG) is exactly the same as it was 28 days ago, 1010 mg/dL. Since IgG and M-spike tend to track each other, perhaps the decrease in M-spike is false. On the other hand, Lambda light chains dropped 26% to 1.95 mg/dL, by far the lowest I've seen in six years of living with myeloma. This is another erratic test, but it appears to be valid because Kappa light chains are unchanged. Most of the Lambda light chains come from the malignant cells, so perhaps the decrease in M-spike is real.

Whatever. One can analyze these things way too much. Better to celebrate a little, because for sure M-spike didn't go UP, and then wait 28 days for the next result.

Peripheral neuropathy (PN) is still an issue. Mine is still mild, with some partially-dead spots and some tingling in the bottoms of my feet and one thumb. Happily, it seems to be stable, not getting worse any more. I'm putting together another post on neuropathy and hope to publish it soon.

Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post. Add peripheral neuropathy to the list.

Here are a few of the latest test results:

Test Apr 30   May 28   Jun 25   Jul 23   Remarks
M-spike g/dL 0.8 0.9 0.9 0.8 Best tumor measure
IgG mg/dL 1060 1030 1010 1010 Variation is normal
L FLC mg/dL 2.55 2.60 2.63 1.95 L Free light chains
Calcium mg/dL 9.6 10.0 9.6 9.7 Below 10.2 is best
Creat mg/dL 0.9 1.0 1.0 1.1 Kidney, lower is better
HGB g/dL 14.3 14.4 14.0 14.8 Hemoglobin, normal
RBC M/uL 4.01 4.06 3.93 4.13 Red cell count, low
WBC K/uL 3.6 4.0 5.6 3.9 White cells, normal


Sunshine and I also discussed with Dr L:
  • I told her that because of the muscle wasting and other side effects I wanted to reduce the DEX dosage, currently 8 mg, but because the trial doesn't allow the DEX to be increased again I would refrain from proposing that. Her response led me to believe that the DEX, now at only 8 mg once per week, may not be doing that much good anyway, and we should revisit the issue in another month. I'm up for that.
  • I mentioned that I had gained a few pounds since the beginning of the trial, but that because of the muscle wasting from DEX my body had changed shape, with a layer of fat on my belly and chest. I told her that I had gone back on Weight Watchers to get the weight under control, and re-started a resistance training program to try to reverse the muscle wasting. She approved.
  • I mentioned that I had recently done a difficult run with a heart rate monitor, which reported an average rate of 126 and a maximum of 142 beats/min. These numbers are perhaps ten beats/min lower than they should be. I mentioned that I had looked back at similar records while I was on thalidomide, in 2004 and 2007, and seen similar reductions in exercise heart rates. She acknowledged this and said that it happens with Revlimid as well.
  • She asked if I felt tired, noting that I had apparently said I was tired in a checkup last December. I said no, I wasn't any more tired than a 68-year-old should be, and certainly not chronically tired. I can just see the doctor's writeup: "patient denies feeling tired." :-)
  • We discussed peripheral neuropathy. I've accommodated to it somewhat, as it seems to have reached a stable level, with some tingling and partial loss of feeling in my feet, not getting any worse. I mentioned that I am taking the full regimen of supplements and also keeping my feet warm, as I believe that warmth aids healing. She said that she also believes that stimulation helps, and suggested massage as well.
  • For 17 cycles I took the pomalidomide at bedtime and, on DEX days, took the DEX with dinner. For this past cycle I took the pomalidomide before breakfast and the DEX with breakfast. I mentioned that I preferred taking the DEX in the evening, and she didn't think it would make much difference. Indeed, the change to morning meds didn't seem to make much difference in this past cycle, though it certainly didn't hurt either.
  • She said a few things about pomalidomide that I won't report because they are not yet published, but I think these are OK and I hope I got them right:
    • 82% of trial patients got at least a 25% reduction in M-spike.
    • About the same percentage of patients have responded to pomalidomide as respond to Revlimid, but many of these have previously failed Revlimid.
    • Patients with high-risk genetics are experiencing encouraging responses.
    • One patient in particular did not respond for six months, and then the M-spike dropped very dramatically.
    • Other patients have reached a plateau, level for several cycles, followed by a gradual drop to still-lower numbers.
    • Her theory as I understood it: Pomalidomide first reduces the tumor burden directly by interfering with NF-kB and possibly by other mechanisms as well. Then the body's own immune system is able to continue the good work and improve on it.
    • She said that malignant cells pop up within each of our bodies all of the time, but our immune systems normally spot those and kill them.
    • Some patients reach a plateau, as I have, and then just stay there, as patients sometimes do on Revlimid. I hope that's me - she hopes so too.
  • I showed Dr L a chart of blood glucose versus time of day (below), with DEX taken at breakfast. She remarked that it didn't seem too bad, meaning that the glucose never went too high, even at meals. I mentioned that we do try to minimize carbohydrates on DEX day, and she said that was a good idea.
Other Stuff:

As part of the study I get an electrocardiogram (ECG) every three cycles. This time the cardiologist reported "marked sinus bradycardia with sinus arrhythmia." Bradycardia is simply a low heart rate - mine was 38 this time, the lowest ever. No surprise, though, I'm a runner with an endurance athlete's heart, and with the added effect of the pomalidomide I always get a comment about bradycardia. I don't recall getting a comment about "sinus arrhythmia" before, but as far as I can tell that just means that the interval between beats is not perfectly regular. Dr L didn't bother to comment on it.

For the upcoming cycle I plan to take the pomalidomide in the morning, usually before breakfast, and the DEX Sunday evening with dinner.

Also, one of the people who post on the MMA List recently noted that alcohol is a neurotoxin, and said that his neuropathy improved when he stopped having his evening glass of wine. It's worth a try, so I may also find an appropriate window of days and stop enjoying my one evening beer for at least a week, just to see if there is any improvement. Sigh.

Blood Glucose v. Time.  Click to enlarge
Chart of blood glucose versus time, after 8 mg DEX taken with breakfast. You can see the spikes caused by lunch and dinner. Glucose was normal by the next morning, so that effect of the DEX seems to clear within about 24 hours.

Sunday, June 28, 2009

Stable Is Good

Mayo Clinic Visit Thursday, June 25, 2009, end of Cycle 17:

According to Mayo, CC-4047 is now officially called pomalidomide, which is the generic name, like lenalidomide is for Revlimid. There is no trademark name yet, like "Revlimid," though "Actimid" was used for a while and then apparently discarded because of its similarity to Actifed. Don't want to mix THOSE up. I'll probably use pomalidomide and CC-4047 interchangeably here - we'll see.

I just got the results for Cycle 17 of the Mayo Clinic phase-II study of pomalidomide with dexamethasone. Bottom line: No change from 28 days ago. Dr KDS pronounced it "stable." M-Spike is 0.9 g/dL, unchanged, and IgG is 1010, virtually unchanged from 1030 mg/dL. Other results are mostly the same as well, except white blood count and neutrophils are up 40% and 60%, respectively, probably because I'm battling a cold.

Peripheral neuropathy (PN) is still the issue. Turns out that pomalidomide can cause PN just as Revlimid can. Mine is still mild, with some partially-dead spots and some tingling in the bottoms of my feet and one thumb. It doesn't seem to be getting worse very fast, but it is the fly in the chicken soup. I'm putting together another post on neuropathy (as if I know anything about it) and hope to publish it soon.

Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post. Add peripheral neuropathy to the list.

Here are a few of the latest test results:

Test Apr 02    Apr 30    May 28    Jun 25    Remarks
M-spike g/dL 0.9 0.8 0.9 0.9 Best tumor measure
IgG mg/dL 1060 1060 1030 1010 Variation is normal
L FLC mg/dL 3.04 2.55 2.60 2.63 Free light chains
Calcium mg/dL 9.5 9.6 10.0 9.6 Below 10.2 is best
Creat mg/dL 1.0 0.9 1.0 1.0 Kidney, lower is better
HGB g/dL 14.7 14.3 14.4 14.0 Hemoglobin, normal
RBC M/uL 4.26 4.01 4.06 3.93 Red cell count, low
WBC K/uL 4.2 3.6 4.0 5.6 White cells, normal


Sunshine and I also discussed with Dr KDS:
  • PN from pomalidomide is probably not like the mostly-permanent PN from thalidomide. There is not a lot of experience with it yet, actually, but when a patient goes to a 21-day-on and 7-day-off regimen it often gets better during the seven days. Further, it may reach a mild level, as mine has, and then not progress further. Or it may continue to get worse.
  • It may or may not reverse fully when the patient goes off pomalidomide altogether.
  • Mayo uses the following classification system for PN (if I heard this right):
    • Grade 1 = Mild tingling or numbness or abnormal nerve-function tests (me).
    • Grade 2 = Some interference with function, but not disabling. E.g. little or no feeling in some fingers.
    • Grade 3 = Some disability, e.g. difficulty driving or operating other equipment.
    • Grade 4 = Major disability, e.g. wheelchair required.
  • For most patients on pomalidomide who get PN, it remains at Grade 1. But the study is young.
  • Running doesn't seem to make a difference for me. I ran three marathons during the 28-day cycle, and the neuropathy did not get worse after any of them. It may have gotten slightly better, though not much.
  • I believe that warmth is a key to healing, and mentioned that I keep my feet warm as much as possible, using wool socks much of the time, even in bed. She agreed, and said that other patients have stated that their PN gets worse when their feet are cold. This may not cause irreversible PN, but perhaps it has a cumulative effect. No clogs for me.
  • I asked if neuropathy can ever extend to the male sex organs. She replied, with some definiteness, that it can. On further discussion, however, it seems the effect is loss of function, and may not be from neuropathy per se but from the myeloma and its treatments. Perhaps I'll ask Dr L the same question next session. It's important.
  • I asked about the most likely course of the myeloma with pomalidomide treatment. She responded that the study is only a year and a half old, so there isn't a lot of information yet, but it has begun to fail for some patients, just as thalidomide and Revlimid usually fail eventually. I joined the study in its first three months, so I'm fortunate that it's still stable for me.
  • If Revlimid is a model for pomalidomide, a few patients may remain stable on it for years. Oh, I hope I'm one of the few. We shall see.
  • I'm scheduled for a very warm marathon in a few weeks, so I asked if the myeloma or its treatments put me at any more risk than any other 68-year old. She thought not, but couldn't resist advising me to be careful. Heck, if I'm careful, I won't do it. And I might not.
Other Stuff:

Going off grapefruit for a month didn't seem to change the M-Spike, and the PN got a little worse even without it, so I'm going back to enjoying a grapefruit every day.

I have the longest-lasting cold I've had in years, almost three weeks now. Maybe I was just due for a major cold, or maybe my immune system is impaired by the DEX and three successive marathons. It's getting better though. Perhaps the grapefruit will help.

My regimen will not change in the next cycle. If the PN gets significantly worse, I will call the doctor.

Life goes on
At least four chicks hid in this robin's nest about five feet off the ground. Mama was yelling at me as I took this photo, threatening me with close fly-bys. The next day all of the chicks left the nest - I saw one of them go. Mama took them farther into the woods, yelling all the while.

Thursday, May 28, 2009

Neuropathy is the Issue

Mayo Clinic Visit Thursday, May 28, 2009, end of Cycle 16:

Peripheral Neuropathy:

I posted about the possible beginnings of peripheral neuropathy (PN) eleven days ago. In those days I have taken most of the supplements listed on my Supplement Regimen page. The symptoms have not disappeared, however, though they have changed a little, and I am still not certain (beyond a reasonable doubt) that the feelings in my thumbs and feet are in fact PN from the CC-4047 medication.

There is normal sensation, or I should say no sensation, from the affected areas unless they touch something. One thumb always feels fine now, and the other, which was injured and its nerves cut many years ago, does tingle when touched, though the thumb pad is still sensitive to touch in the normal way as well. The soles of both feet also feel tingly when I walk on them, the same sort of tingle that one may feel when a limb is waking up after being "asleep" for lack of blood. Like the thumb, though, the skin of the soles of the feet is still normally sensitive to touch, and in fact the soles of the feet are still ticklish. None of this affects my running yet, nor is it really even very annoying. Yet.

Bottom line: if this is PN, it isn't very bad yet. I discussed all of this with Dr KDS at Mayo today. She advised me to keep them posted if the PN advances at all, because there are things that they can do. She talked about a few prescription medications, such as Neurontin, for managing the symptoms of PN. She did not, however, hold out any hope of a drug that would reverse the PN itself. She also mentioned that one patient had obtained good results from a machine of some sort, and will get me more information on that. When she does, if it's real, I'll post whatever I can about it.

Test Results:

I'm still on the trial of CC-4047 with dexamethasone (DEX), now taking CC-4047 2 mg every day and DEX 8 mg every Sunday night. In the past 28-day cycle IgG has gone from 1060 to 1030 mg/dL, Lambda free light chains from 2.55 to 2.60 mg/dL, and M-Spike from 0.8 to 0.9. Basically, this is no observable change, because each change is well within the measurement error of its test. Everything else is good too - calcium is up but well within range, ALT and AST are down, LDH is actually below its reference range at 130 U/L, WBC and ANC were down a bit last month but are now back up, it's all cool.

Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post. Add peripheral neuropathy to the list.

Here are a few specific test results:

Test Mar 04    Apr 02    Apr 30    May 28    Remarks
M-spike g/dL 0.9 0.9 0.8 0.9 Best tumor measure
IgG mg/dL 923 1060 1060 1030 Variation is normal
L FLC mg/dL 2.64 3.04 2.55 2.60 Free light chains
Calcium mg/dL 9.7 9.5 9.6 10.0 Below 10.2 is best
Creat mg/dL 1.0 1.0 0.9 1.0 Kidney, lower is better
HGB g/dL 13.7 14.7 14.3 14.4 Hemoglobin, normal
RBC M/uL 3.89 4.26 4.01 4.06 Red cell count, low
WBC K/uL 4.5 4.2 3.6 4.0 White cells, normal


Sunshine and I also discussed with Dr KDS:
  • Mayo has seen some patients on CC-4047 develop peripheral neuropathy, as they might with thalidomide or Revlimid. There is not yet enough information to say how likely or how serious this side effect might be.
  • Dr KDS is going to ask a dermatologist if there is anything to be done about thinning skin from the DEX.
  • She confirmed that the DEX can cause wounds to heal more slowly. It seems to take a month now, instead of a week or two, for a little cut to heal.

Since about Christmas I've been eating a grapefruit every day. Grapefruit can increase the potency of some drugs by inhibiting a digestive process that would normally reduce the amount of drug that can go from the stomach into the blood. We have wondered if the grapefruit has played a part in the good M-Spike results in recent months by increasing the concentration of CC-4047 in my blood. Now, of course, we also wonder if it might not increase the severity of peripheral neuropathy symptoms if I'm getting more CC-4047 than expected. Therefore, for the next month, no grapefruit for me. Too bad - I've been looking forward to that daily refreshment.

Organic oatmeal, organic strawberries, organic grapes, mango, banana, organic walnuts, organic nonfat milk.

Monday, May 25, 2009

Stewart Asquith Died

Stewart AsquithStewart Asquith was a professor at the University of Glasgow, Scotland, teaching and researching in the field of children's rights. And he was one of us, a myeloma survivor, until April 13, 2009, when he died in Edinburgh, from myeloma and its treatments. He blogged about those on Stewart, Myeloma, and Revlimid. An inspiring account of his life is posted on The Scotsman magazine. Quite a man.

The Reaper In the last several years Stewart lived life to the max, taking vacations with his wife Elspeth, restoring classic bicycles and building his own recumbent, building a solar energy collector for his roof, renovating a bathroom, sailing on an ancient fishing vessel (pictured), on and on. All this time he went through a transplant, radiation treatments, surgeries, high-dose steroids, insulin, and more. He was an irrepressible soul who could be stopped in only one way.

I knew Stewart only from his blog and a short exchange of emails, but I have some Scot blood in me and feel an odd affinity toward this human dynamo. The world is a bit poorer at the loss of Stewart Asquith. We shall miss him and I do miss him.

Friday, May 22, 2009

Colloid Nodule of the Thyroid

The thyroid nodule (previous post) is a "colloid nodule," apparently quite benign. Doctor L says take another look with ultrasound in six months or a year, see if it's growing. Otherwise it's fine if it isn't causing problems breathing or swallowing.

It's not. This drama is over.

I did actually increase my iodine intake a couple of months ago, so maybe the treatment, if any is needed, is already underway.

Tuesday, May 19, 2009

Hearing Exam Leads to Thyroid Biopsy

My hearing isn't great. Down about 20 db in one ear, which is the bottom of "acceptable," and down much more in the other. So I visited an audiologist who recommended hearing aids, but who first scheduled me with an ear-nose-and-throat (ENT) specialist because she thought the big difference between the two ears could indicate a medical problem. I've had this difference for decades, but I went anyway.

Dr D, the specialist, did an examination of the ears and of course found nothing. Then, because he is an ENT, he looked in my nose and checked my throat. "Did you know about this nodule on your thyroid?," he asked. "News to me!," said I. He explained that he always does the cursory examination (he may not have used the word "cursory") without expecting to find anything, but this time he did. He said it was about a centimeter and a half in size, and recommended an ultrasound exam to check it further.

So today I expected an ultrasound examination of a nodule on the thyroid. But it turned out to be ultrasound imaging immediately followed by a fine-needle biopsy - both had been scheduled because the nodule was large. I believe that the biopsy is indicated for nodules exceeding 1 cm in size, and K, the technician, said this one was 2.6 cm in the largest dimension. As she pointed out, that's just over an inch. I'm a little surprised that I didn't know about it.

They removed my shirt so that it would not get Betadine on it, then swabbed the area abundantly with the Betadine, and finally applied a hypo of lidocaine. Almost immediately, Dr M, the radiologist, started taking samples of the nodule with very small gauge (#25) needles. I felt the first two needles, because the lidocaine hadn't quite taken effect, but the pain was really quite minor so I didn't complain. Anyway, complaining would mean talking, which is not a good thing with a needle in the neck. The nodule was close to the carotid artery, which they refer to as "Big Red" and avoid at all costs.

Dr M explained that the nodule was not homogeneous, and he was taking samples from different areas. I couldn't see the ultrasound screen, so I watched him. Once he had the needle in my neck his eyes never left the screen until he withdrew the needle again. Totally guided by the imaging. He took four samples, then stopped, explaining that they would send these to the pathologist who would tell him in a few minutes whether he had enough cells.

Meanwhile K asked about my myeloma and shared that she herself was a 2 1/2 year survivor of an allogenic umbilical-cord stem-cell transplant for leukemia, done at the University of Minnesota. Her doctors had said that her acute leukemia was not treatable with chemotherapy, but she had a 50/50 chance of survival with a stem cell transplant. She chose allogenic, despite the lifelong issue of graft-versus-host disease, because she believed that the result, if she survived the transplant, would more likely be a cure. So far so good! No trace of the leukemia. After two years they call it "remission," and she's there. She looks great. Perhaps 25 - 30 years old, I hope she has a long life ahead of her.

Back on the biopsy table, Dr M informed me that the pathologist was not satisfied with the sample. Thus more lidocaine, and this time a larger-bore biopsy needle, a #22. Apparently, needle sizes are like wire sizes, smaller numbers indicate larger needles. But I didn't feel any of these needles, and I think he used six more. He actually ran out and had to use one of the smaller ones.

We waited another 20 minutes and were told that they probably had enough. Dr M did mention that the pathologist had not seen cancer cells in his cursory examination of the samples, and that's a good sign. It can change, of course. In addition, there is always the chance that the pathologist will change his mind about the size of the sample, but if that happens we'll schedule another biopsy and this time they'll use a needle that can cut off a chunk. They don't like to do that on the neck, said Dr M, but he didn't explain why. Of course there's always the risk of hitting Big Red, and I suppose there's also a risk of hitting nerves or something. There's a lot of stuff crammed into the neck. Come to think of it, they made me sign something after the initial ultrasound and just before the biopsy. Perhaps it was the "informed consent" sheet, which of course I didn't read. Who reads a clipboard when they're already flat on the table?

It takes the pathologist 48 hours to crank out the final report, according to K. So I guess I won't know until Friday at best. In the meantime I'm not too worried. My thyroid function tests have been normal, and what the hell, I already have cancer.

Breakfast: Organic oatmeal with dried cranberries, blueberries, organic apple, organic pear, organic strawberries, orgnic walnuts, and organic nonfat milk. Not shown: Two organic eggs cooked in good organic oils.

Sunday, May 17, 2009

Peripheral Neuropathy Treatment

It's here, perhaps. Maybe. I hope not. In the past few days I have felt a tingling sensation in the very tips of both thumbs, becoming much stronger when I touch the skin there. Nothing in the fingers yet. But in bed last night I noticed a numbness in the sole of my left foot; not so much the toes as the ball of the foot and nothing in the right foot yet.

That's all so far. Not enough to affirmatively declare that peripheral neuropathy (PN) is upon me, but enough to be a little scared. PN can be very painful and, when body parts go numb, rather disabling as well. It usually begins in the sensory nervous system, but can even progress to the motor nerves, resulting in partial paralysis. It is to be avoided if possible, and in my opinion it should be accepted as a necessary consequence of treatment only if all other avenues of treatment have been exhausted.

In Myeloma patients PN can be caused by at least three different things:
  • Myeloma-specific chemo drugs such as thalidomide. I'm not taking thalidomide any more, but am taking CC-4047, a thalidomide derivative.
  • Dexamethasone (DEX), which I am taking, and which (I believe) can cause symptoms of diabetes, one of which is PN.
  • The myeloma itself, especially if protein or light-chain counts are high. Mine are not, as of two weeks ago.
I have another Mayo appointment in two weeks, when this subject will get some genuine medical attention. Furthermore, by that time, I will have a better idea whether or not I really do have PN.

In the meantime I'm trying to learn about it, and do whatever I can to mitigate the problem. Happily for me, the leaders of the Minneapolis Myeloma Support Group handed out a sheet of information on PN treatment at yesterday's monthly meeting.

Dana-Farber Cancer Institute:

That sheet, it turns out, was a printout of a web page which was transcribed from a paper handout at Dana-Farber. A myeloma survivor (Beth I think) has posted that handout HERE on the website, which also has lots of other good information about myeloma and treatment. To summarize the sheet:
  • Multi-B vitamins with B1, B6, B12, folic acid, and the other B-vitamins. Dosages: B6 100-200 mg, folic acid 1-2 mg.
  • Vitamin E 400 IU daily.
  • Fish oils with the omega-3 acids EPA and DHA.
  • Evening primrose oil capsules.
  • Flax seed oil.
  • Amino acids. No further description.
  • Alpha-lipoic acid (ALA) 200 mg twice daily, within 2 hours of a meal.
  • Acetyl L-carnitime 500 mg twice daily, within 2 hours of a meal.
The same page gives advice for cramping, and also has a list of prescription drugs. I get the impression from members of our support group that the best of those drugs come with their own list of significant side effects. On the website itself there is another Q & A page listing non-prescription alternative & nutritional self-treatment for PN. Summary:
  • Vitamin B6, 50-100 mg/day.
  • L-glutamine, 15 grams twice daily. Find a brand with no fillers.
  • Alpha-lipoic acid 300 mg twice daily for up to four weeks, then consult a dietitian or doctor.
  • Acupuncture.
MD Anderson Cancer Center:

MD Anderson is currently running a trial of oral alpha-lipoic acid versus a placebo for chemotherapy patients. Further, there is a PDF document on the website in which Dr Oh discusses diabetic PN. He suggests vitamin E, vitamin B, and L-acetyl-carnitine (same as acetyl-L-carnitine).

Mayo Clinic:

I didn't find much on the Mayo Clinic web site except for one reference to the use of vitamin B-12 to prevent PN. However, I know that Mayo did a study with intravenous ALA which showed marked improvement for patients with diabetic neuropathy. I just can't find that study right now.

Naturopathic Community:

This is a large community and I haven't done much of a search yet, even though naturopathy may be the best bet for controlling symptoms of PN. The first website I came across suggests B-12, ALA, and L-glutamine, with additional supplements if poor circulation is suspected.

International Myeloma Foundation (IMF):

I found one good video presentation from last December's Myeloma Workshop in Washington DC. Dr Paul Richardson, from Dana-Farber Cancer Institute described research on the cellular mechanisms that appear to cause neuropathy, and gave a quick list of possible complimentary treatments:
  • Multi-B vitamin, folic acid, and vitamin E.
  • Alpha-lipoic acid, L-carnitine, and L-glutamine.
  • Magnesium and potassium.
  • A daily multivitamin.
  • Topical emollient creams containing cocoa butter with spearmint or menthol. He explained that the injured nerves are in a very thin layer just under the skin and these creams might be able to stimulate them.
Margaret's Corner:

In a recent post, Margaret's Corner, an important source of information regarding myeloma treatments, states that curcumin can help alleviate and possibly reverse peripheral neuropathy from chemotherapy.

Georgia Cancer Treatment Center:

Sunshine found this newsletter which suggests:
  • Bromelain 200-400 mg three times daily
  • L-glutamine 10 grams three times daily, and
  • Vitamin B-complex. It also points out that bromelain is abundant in pineapple, and that it also treats other maladies such as bruising, arthritis, bunions, bursitis, tendonitis, carpal tunnel syndrome, gout, and sinusitis.
A Regimen:

It turns out that I am already taking many of the supplements that are recommended above, though some in lower quantity than recommended. I will modify my supplement regimen so that it includes:
  • A daily multivitamin.
  • A good multi-B (e.g. B-100), with added B6 if necessary to get 50 to 100 mg/day but not more than 100 mg.
  • Vitamin B-12 sublingual 1000 mcg daily.
  • Alpha-lipoic acid 300 mg twice daily.
  • Acetyl-L-carnitine 500 mg twice daily.
  • Vitamin E 400 to 800 IU daily, but not more than 800.
  • L-glutamine 15 to 30 grams per day. Wow.
  • Curcumin 500 mg daily.
  • Flax seed oil 1000 mg per day. Maybe fish oil too, but I need a reliable source.
  • Bromelain, amount undetermined just now.
If that doesn't solve the problem, then I'll consider:
  • A visit to my naturopath for her advice. Might do that soon anyway.
  • Altering the chemo to reduce symptoms, such as three weeks on and one week off instead of the current four-weeks-on regimen. Mayo Clinic will have something to say about this of course - I'm in a trial.
  • Acupuncture.
  • Evening primrose oil.
  • Magnesium and potassium, more than I now get in food and the multivitamin.
  • Topical creams with cocoa butter and spearmint or menthol.
Your Turn:

This is a huge subject, barely touched in this blog post. If you have suggestions or information, please do comment. Sometimes the comments are much more helpful than the post itself. Thanks,