Day 6 of Cycle One

Wahoo!

Good CBC.  As part of my new myeloma regimen, we do a CBC with differential at the end of each of the first three weeks, just before taking the next dose of the Primary Drug.  I get that done at the local clinic, with the results sent to Mayo Clinic.

I'm not a doctor, but I know what my doctors want to see in the CBC, and by that standard I'm doing great:

• White blood count is 5.8 k/uL, higher than I remember seeing it in years and well within the reference range.  
• Neutrophils, which have been lower than they should be and which we have watched with apprehension, are 3.5 k/uL, perfectly normal.  
• Platelets are 172 k/uL, on the low side but about where they have recently been and also well within the reference range.  

We don't yet know if the first dose of this new regimen is fighting the myeloma, but the CBC at least suggests that it isn't hurting me.  I don't yet detect any side effects from it.  Tomorrow I'll take the second dose.  Three weeks from now we'll find out what is happening to IgG, M-Spike, and light chains.  I don't know when we'll look at the bright spinal lesion revealed by the recent PET scan, but PET is the only way to see it, so I hope we'll do that in a few months to confirm that the light has been extinguished.

Day One of Cycle One

I'm now on a study of a new drug (Primary drug), along with dexamethasone (Dex).  I take both once per week for three weeks, then one week off from the Primary drug, then repeat that cycle.

Yesterday was Day One.  We drove 100 miles to Mayo Clinic in Rochester for no reason other than to pick up the pills of the Primary drug (they wouldn't Fedex them), then waited 3 1/2 hours to pick them up, which normally takes less than an hour (not Mayo Clinic's best day, grump grump).  But we got back by dinner time, to take them as follows:

• Dex with the evening meal: ten tiny 4-mg tablets = 40 mg.
• Wait an hour and a half after finishing the meal and my one beer.  I asked - the pharmacist said beer is food.  Tsk.
• Take a Kytril tablet (Granisetron) against possible nausea.
• Wait another half hour.
• Take the Primary drug.

This study has two arms which vary in the amount of the Primary drug. Apparently I'm in the high-maintenance arm, more likely to have side effects I'm thinking, but possibly more effective as well.  OK with me, because they'll drop the dosage if I run into trouble.  I want to see that PET Scan spot (lesion) on my T5 vertebra go away.

So far, on day 2, also known as the morning after, NO Problems:

• My biggest concern is neuropathy, but after just one day I certainly wouldn't expect any neuropathy, and there is none.  I have just a little neuropathy anyway in fingers and feet, and that actually seems to be less today.  Perhaps the Dex is improving it temporarily - Dex is a powerful anti-inflammatory among other things.  Seven years ago the Dex with a different regimen cured my chronic headaches, apparently for good.
• I experienced no nausea.  The prescription suggests taking one pill just before taking the Primary drug, then another 12 hours later.  I skipped the second one.
• I slept well, despite the drugs.  Dex, especially, makes that difficult for some people - I'm lucky.
• My blood oximeter displayed 97% with a heart rate of 55, both this morning and this evening.  Prior to this therapy, for the last seven years, those numbers would usually be about 98% and 44.  Heart rate is low because I'm a runner, with stronger than usual "cardiopulmonary function," according to the docs.  We'll see what they are during the week, off Dex.
• In addition to neuropathy, the drugs can cause a drop in platelets and neutrophils, among others.  For this first month I will get weekly CBC counts.

I felt WONDERFUL in my run this morning, and ran faster than usual, an effect of the Dex.  It's like waaaay too much coffee.  I've had Dex before, and if experience teaches anything I won't feel quite so wonderful tomorrow, as the Dex effect wears off.  I'll let you know.

New Regimen

After seven years my myeloma has finally made an end run around my dear friend Pomalyst and found a way to hurt me.  The previous post shows the PET scan of the hot little lesion that threatens to hurt my spine.  Pomalyst is still working, you might say, because the blood markers IgG and M-Spike continue to be stable.  Nevertheless the T5 lesion appeared, so something must change soon, and I am enrolling in a study of a new drug.

Enrollment in the study is tomorrow, Tuesday, with a battery of appointments:

1. Urine test
2. Doctor visit
3. Bone marrow biopsy
4. Electrocardiogram
5. Chest X-Ray
6. Blood draw for who knows what
7. Skeletal bone survey
8. Second doctor visit
9. 30-minute study (don't know what this is - maybe the pill pickup?)

This basically takes all day, but I'm very happy that they made it all fit into one day because it's nearly a 2-hour drive for us each way.

I consider myself an exceedingly lucky myelomiac, because once again the myeloma menace was discovered before it really hurt me.  There was no way to find this nasty little hot spot except a PET scan, and those are not performed routinely.  Had the scan not been done, most likely I would eventually have broken that vertebra, requiring surgery and possibly resulting in serious permanent injury.  Lucky.

  

Patient advocacy did play a part in the luck, though.  For seven years, on the anniversary of my start in the Pomalyst trial, I have requested some sort of check on the bones, be it an X-Ray survey, a DEXA scan, or a PET scan.  This year the PET seemed appropriate because of a minor pain in the lower back.  Nothing was found down there, but the T5 lesion up by the heart changed everything.

A fond farewall to Pomalyst, which has protected me through 60 marathons, including one in each of 47 states.  We were hoping to get to 50 states on Pomalyst this year, needing only Wisconsin, Illinois, and Nevada, but that will have to wait.  Anyway 47 isn't bad.  Perhaps we'll see Pomalyst again some time, probably in combination with something equally effective.  Meanwhile we keep running.

Seven Great Years

I started on a trial of Pomalyst seven years ago, 92 cycles ago, starting with CC-4047 (now Pomalyst) and dexamethasone (DEX) but most of the time taking 2 mg of Pomalyst daily as a single agent.  It's still keeping the M-Spike down to 1.1, but a PET scan on Tuesday revealed a small but bright (very active) myeloma lesion in the T5 vertebra.  This means that the current regimen is no longer working, my spine is at risk, and something has to change.

Copyright (c) 2015 Mayo Clinic

The image shows a cross-section of my body laying on my back, the view slicing through both arms and the chest, including the lungs (black) and with the T5 vertebra at the bottom.  The brightest spot is the myeloma, just above the spinal cord in the vertebra.

This image is copyrighted 2015 - no one has permission to display it online or anywhere else.

Dr L called this evening and we had a wonderful conversation.  Some points:

• This may mean that the myeloma has mutated in that location, or that a pre-existing clone, resistant to Pomalyst, has finally raised its ugly head there.
• Either way, this lesion has to be treated, both to protect the spine and to keep the new clone from taking over.
• There is no way to know how fast the lesion is growing, so sooner is better than later.
• The lesion is not accessible by needle (for a biopsy or for treatment), because the lungs and aorta are in the way from the front and side, and the spinal nerve bundle and bone prevent access from the back.
• Dr L didn't think it was a good target for radiation therapy, feeling that a systemic treatment should be tried first.
• This lesion probably cannot be seen by x-ray.  The hole in the bone might be seen by CT-scan, but that wouldn't show whether the myeloma was still active, so the only way to confirm a successful treatment will be another PET scan showing that the sugar-sucking bright spot is gone.

Here are three interesting treatment possibilities:

• The study started with Pomalyst and dexamethasone, so why not just add DEX back to the regimen?  This would be the most conservative approach, but I'm not enthusiastic about it because I think the bright little lesion needs more aggressive treatment.  I really really want to stomp it out.  Really.
• How about adding a few cycles of Kyprolis to the Pomalyst (with DEX), and then going back to Pomalyst maintenance if that regimen succeeds?  This approach might work, as Kyprolis and Pomalyst are a very potent combination.
• There is a study of Ixazomib (MLN9708) with DEX at Mayo Clinic.  Ixazomib is a new oral proteasome inhibitor which appears to be very active against myeloma with few side effects.  The study regimen includes DEX, but not Pomalyst.  Mayo is checking to see if I am eligible.

There are other choices, of course, several others.  We exclaimed about the abundance of therapies available now, compared with those available 12 years ago when I was diagnosed.  Even thalidomide was then available only in a trial, and there was no Pomalyst, Revlimid, Velcade, Kyprolis, or (several others).

How to choose?  My personal goal is to stay alive and competent for as long as I can benefit my wife and daughter.  I believe that's my purpose here on earth, so all medical decisions are made with the advice of a great doctor and with that goal in mind.

Dr Martha Q Lacy, Woman of the Year

The Leukemia & Lymphoma Society (LLS) combats all blood cancers, including myeloma, supporting research as well as the patients themselves.  Every year the LLS holds a Woman (and Man) Of The Year competition, to raise funds and to honor the nominees.  Dr Lacy is a nominee this year.

Martha Q Lacy, M.D.

Dr Lacy has been my doctor for the last seven of my 12 years with myeloma.  She introduced me to a trial of Pomalyst, the drug that has kept me up and literally running for all of those seven years.  More importantly, she is the Chair of the Division of Hematology at Mayo Clinic, a Professor of Medicine, a frequent speaker at conferences of the American Society of Hematology, and doctor for hundreds of other myeloma patients.  She's the real deal.

Recommended reading:  Here is a copy of a letter that we received from her a few days ago: lacyletter.html.

If you would like to honor Dr Lacy in the LLS competition, and help all of us blood cancer patients to boot, please go to her secure fundraising web page.

Thank you!

Don