Last week I recieved a comment from a reader, Jim, in response to my article, Revlimid/Carfilzomib/Dexamethasone Combo Test Results: So Far So Good!
Jim’s comments were originally flagged as spam and not posted following the story, because he mentioned the company who produces supplements he takes. So what! I’m always glad to hear from readers who are having good luck using helpful pills, powders and potions.
Here is what Jim had to say about the clinical trial:
Hi folks, I am currently in a clinical trial for Carf, Rev, and Dex. I feel like I hit the trifecta. I was told that because of the aggressiveness of my MM I would possibly never reach remission. I went the Velcade route and did 2 stem cell treatments. I almost had a partial response, but no enchalda. So my numbers stayed stable for about 6 months and then took of quickly. I was fortunate to be in the right place at the right time and started treatment 2 weeks later. After eight cycles of treatment, I am happy to say I’m in remission. The clinical trial for this combination is open and they are looking for participants. Hey Pat PN does not go away in most cases. The severity fades a bit, but not enough to jump for joy. The nerve damage is usually, non-reversible. The sheathing that protects the nerve bundles is eaten away by the velcade. To date no one has done anything about it. There are some drugs that treat certain pyschotic disorders and are used to minimize PN and those drugs come with their own nasty baggage. I use Blue Emu from CVS for the muscle cramps and pain in my feet and hands. Here are things that I have to done to make my life better. For men get your testosterone levels checked, if low get the patch. This will combat the fatigue and help your stamina. All MM patients must exercise. Start with walking, or stionary bike riding, anything to exercise (EXERCISE) For all MM patients have your Vitamin D levels checked if low (without a doubt the will be low) Get this corrected immediately. D helps the body absorb calcium, MM folks need this to strengthen their bones and to combat the side effects of dexamethasone, which weakens red blood cells, muscle tissue and bone tissue. With all the medications and toxic ones to say the least, we need take care of the kidneys and liver post haste. Use cranberry extract supplement to detox the kidneys and gall bladder. I use CVS cranbery extract triple strength. For the liver I use milk thisle 140 mg 2 times a day. After 3 or 4 days you will notice improvement in bowel movement and urinary function. Many MM patients have a problem in both these areas. Due to the high level of hydration during chemo therpay getting up several times at night is a problem, because your kidneys are overworked and possibly damaged because of decalcification. Again fatique should be lessened and the uptake of minerals, vitamins and medications will increase. I have lowered my uric acid numbers and have greatly improved my bilirubin numbers. My CBC and routine chemistry results are almost normal. I only get up once a night now and constipation is a thing of the past. Finally, one last fatigue fighter, red blood cell strengthener and oxygen carring agent. Don’t laugh, because it’s a mushroom extract. Much has been written about cordyceps sinensis. Aloha Medicinal Inc, has the most potent and purist supplement available. Watch your red blood cells begin to climb, between cycles and remain steady during chemo. That’s my regimine and I thank alot of people for their insights into these supplements. My doctors at Hackensack University Medical Center have seen these results and may be a little skeptical, but their additudes to these supplements are slowly improving as my chemistry improves.
How exciting! To hear from a patient who is involved in a carfilzomib study–and that it’s working! Jim has agreed to keep us updated on his progress. Good luck, Jim!
Feel good and keep smiling! Pat