Some runners don't like to run the same route over and over again, because repetition is boring. I agree, except when the route is incredibly beautiful, like a mountain trail, because genuine beauty doesn't get boring.
Test Results:
That's how I feel about the pomalidomide drug study at Mayo Clinic - I'm not bored. After the 43rd 28-day cycle, my myeloma is still stable, and that's beautiful, life is good. IgG is down a little, M-spike down a tenth, and Lambda light chains are down significantly. They go up, then they go down. I'm learning to go with the flow, which is especially easy when the flow is down, like today.
Actually, Lambda Light Chains dropped by 31%, while Kappa Chains went up a little, both going in the right direction. These are important cancer markers for some myelomiacs, and this sort of change would be good news for them. Light chains are not the best markers for my myeloma, though, so I don't know how much it means. Anyway it's certainly not bad news.
Creatinine is not a cancer marker, but is the primary kidney marker and is checked every month because myeloma can cause kidney failure. Creatinine was near the high end of the range for the second successive month. However, Dr RH explained that creatinine is a byproduct of muscle breakdown, which is happening to everyone all of the time but may be higher than normal in my case because of the running - I ran two marathons in the last 28 days, one just 12 days ago. So I won't worry unless it goes quite a bit out of range. Meanwhile, more water would probably be good. Kidneys like water. Alas, Dr RH didn't think that beer would do quite as well.
Supplements:
For this cycle I dropped two supplements: (1) Marrow Plus, Chinese herbs for bone marrow; and (2) Genistein, a supplement which may have an anti-tumor benefit but also some side effects. I also added a supplement containing L-Arginine 500mg and L-Ornithine 250 mg. Results:
- Marrow Plus: The neutrophil count shown below was unintentionally ordered and was performed this morning at 6:00 am, reading 1.17 K/uL. It's always low in the morning. The "real" (intended) count was done yesterday afternoon, reading 1.90 K/ul. Both of those numbers are above the cutoff for the study, and my conclusion is that I don't need the rather expensive supplement.
- Genistein: Since the tumor markers all went down, I assume that this supplement can also be dropped from the regimen. If it ever did any good, it probably isn't helping now.
- L-Arginine & L-Ornithine: These are closely-related amino acids with a reputation for improving blood flow. Listen up men: It works! "Blood flow" is objectively and subjectively improved. Maybe it helped to drop the Genistein, but I think it's the added L-Arginine. I might create another post about that if I get up enough nerve.
| Test | Apr 07 | May 05 | Jun 02 | Jun 30 | Remarks | |||||
| M-spike g/dL | 1.0 | 1.0 | 1.1 | 1.0 | Best tumor measure? | |||||
| IgG mg/dL | 1080 | 1130 | 1110 | 1070 | Best tumor measure? | |||||
| L FLC mg/dL | 2.08 | 3.07 | 2.52 | 1.74 | L Free light chains | |||||
| Calcium mg/dL | 9.9 | 9.4 | 10.4 | 10.0 | High | |||||
| Creatinine mg/dL | 1.2 | 1.1 | 1.2 | 1.3 | Kidney, OK | |||||
| HGB g/dL | 15.5 | 14.7 | 15.2 | 14.8 | Hemoglobin, good | |||||
| RBC M/uL | 4.27 | 4.11 | 4.13 | 4.28 | Red cells, low | |||||
| WBC K/uL | 4.9 | 4.6 | 4.9 | 3.6 | White cells, low | |||||
| ANC K/uL | 1.90 | 1.90 | 2.40 | 1.17 | Neutrophils, low |
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 | Somewhat technical. Best with a wide browser window. | |
| My Supplement Regimen | With links to where I buy them. |
Hot and humid today, 98 at our house. This photo from April reminds us of cooler days:
Good to hear this wonder drug is working so well!
ReplyDeleteI noticed L-Arginine is one of your new supplements. I used to take 2000mg of this a day and developed shingles. I did some research and saw links to L-Arginine and shingles. Clearly you are well under this dose but I thought worth passing along if you were curious to look around a bit.
Take care Don!
Hi - I have read all of your blogs and absolutely love them. I just found out I have MGUS and I will be checked every 3 months. I am just turning 60, am very overweight, and am starting to exercise and improve my food choices. I love your appreciation of life and I am learning so much about healthy foods from your pictures - Hope you don't mind that I will be copying many of your beautiful displays of healthy foods. You are amazing and a wonderful example for us all. You are my new role model! Sherrill
ReplyDeleteHi Don,
ReplyDeleteMy name is Liz and I have been following your blog for a few months now. I am happy to see that you are doing well, eating healthy and still running. It is great to see that you are still giving out recipes and food ideas, some of them I have even followed.
That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey.
Either way, thank you so much for your writing. Take care and best regards.
-Liz@ihadcancer.com
If anyone would like info about I Had Cancer please email me.
Hello Liz,
ReplyDeleteI submitted an email address to ihadcancer.com, but wasn't able to do anything else except submit more (other people's) email addresses. I'll be more interested when it becomes an interactive site.
Dear Don,
ReplyDeleteit seems to me, you have the most experience in taking pomalidomide in the CC-4047 trial in Germany.
My husband takes it since nearly two weeks and most of his soft tissue manifestations of the MM disappeard within 5 days. We were very happy, also our doctors.
But now he has serious problems with rash. The itchiness drives him nearly crazy. Cortisond salve and antihistamines help only for a short time, so we are afraid, he has to stop with the Poma, which could save his life.
Do you have experience in Poma caused rash and what to do about ?
I would be very thankful for any tip about that. The doctors in Germany do not have much experience with the Poma, it is too new here.
Kind regards from Germany
Caro
Caro,
ReplyDeleteI do not recall hearing of a rash with pomalidomide, but I do have a story which may be related.
Some years ago I was given thalidomide as a single agent, to see if it would hold back the myeloma. After a couple of weeks I got a horrible, itchy rash, especially on my arms. It was worst on skin that was exposed to the sun.
Doc said "thalidomide doesn't cause a rash," but I learned later that it can, and I'm absolutely certain that it was the cause. Pomalidomide is a descendent of thalidomide, of course.
I stopped the thalidomide because of neuropathy, and after several weeks the rash went away. Later we tried the thalidomide again, as a single agent again, and the rash reappeared but only a little, as if my body had become accustomed to it.
Suggestions: (1) Avoid direct sunlight on the affected skin; (2) Use as little steroid cream as possible - it gave relief, but permanently damaged my skin. Perhaps the salve you are using is not as bad; (3) Call the IMF hot line for more information, 01.818.487.7455, or go to http://myeloma.org and start up a chat.
Don