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.