all- The FDA's possible regulation of supplements has been discussed on this listserv before and I came across this info and thought the lists might want to read it-
FDA Legislation Update- Many are concerned that this foundation is a backdoor way of attacking DSHEA.
To read more on this topic go to-
David
All- after my pbsct I took nupogen and my white blood cell came back dramatically- however there was an article in the 5/3 wall street jourmal questioning epo for red blood cell increases and nupogen. The article cautions off label use recommending lower doses.
There have also been postings on the listservs discussing how lower doses of thalidomide (50 mg a day down from 200 mg a day) and dex have the same positive effects with fewer side effects-
My question for all- does anyone have personal experience with any lower dose or higher dose therapies? Either pro or con? Any therapies? I think your experiences pro or con will help others.
David
sunnylady1
I took thalidomide for six months, gradually working up from the low dose of 50 mg to the maximum of 200 mg. daily. That took about 10 days. After taking the max dose for awhile I developed problems swallowing capsules, constipation, and neuropathy in my toes. I had numbness and tingling in my finger tips and even up to my ankles at times, and the Burzynski Clinic took me off of the thal. My theory is that thal slows down our metabolic processes which accounts for much of if not all of those symptoms, in my opinion. Since I have been off of the thalidomide, the neuropathy has not progressed, but hasn't improved that much in my toes, digestive processes have returned back to normal (also with taking liquid, vegetable based iron accounting for some of the improvement, i think), and swallowing is fine. I have been informed that mm also has neuropathic effects, but am not sure about that.
What are others thoughts/findings on this?
Sunnylady
I would be interested in knowing if anyone has had severe leg pains while taking Thal. I've taken 50 mg. doses for just a couple of weeks and have experienced leg cramps three separate times. No tingling or neuropathy, but the leg cramping is severe. I was checked for blod clots and none were found. Constipation hasn't been an issue, nor has swallowing.
I have had some tingling in my legs at night even without being on any medication. This seems to come and go. Nothing but massage and heat seems to make a difference.
Has anyone tried taking Thal just a couple of times a week instead of daily, and with what result?
Cathy
I would also be interested in success and/or personal experience with lower doses of THAL/DEX. The first two cycles, my husband was on 200 mg THAL daily and 40 mgs.DEX four days on/four days off. But because of severe leg weakness, he was reduced to 40 mgs. of daily DEX for days 1-4 only out of 28 cycle. Thal dosage has remained the same. We will find out on May 8 what his numbers are re: IgG and M protein.
Claire - Jerry's wife and caregiver
dx 1/07/Stage II /BMB 18% plasma cells/IgG 6,180; neither bone nor kidney involvement; we were not told of M protein at that time.
3/07 - IgG 1840 / M Protein 1.46
4/07 - IgG 1500 / M Protein: 1.38
I am no expert, and have never been on Thal, but I have read that Thal can give long-lasting (?) neuropathy. I know someone who took Thal and stopped when the PN became almost unbearable. Three years later it is still there, perhaps in a somewhat lessened form. As for me, I did experience a bit of PN in my pre-curcumin period. No big deal. What happened is that I would wake up at night with pain in my hands, which felt like blown-up alien stubs until I rubbed them back to normal. That ended once I began curcumin. I still have occasional night-time tingling, but nothing major. Margaret,
Florence, Italy
Clair-
Today is May 7th and you report that you will find out Jerry's numbers tomorrow- good luck!
You mention that Jerry's dex dose was reduced from 40mg daily, 4 days on for off to only 4 days only out of a total of 28 days. The 200 mg daily dose remained the same. Please report Jerry's changes as his dex dose was greatly reduced. Thanks.
David
Hi David - this is just to let you know that I saw your post and will let you know the results after appt. tomorrow. I really do thank you for this B-M blog - it is with appreciation to receive feedback from those who have responded to all of our vaious issues! (oh yes, and on the ACOR list-serve MM blg, also!) - Claire
Hi David - Jerry's IgG went up to 2250 (from 1500) and his M protein went up to 1.79 (from 1.38). He's back on dex for the original schedule of 4 days on/off but this time at 20 mgs. per day (rather than 40 mg) This reduction was at our request and she agreed to try it to see what his response rate would be by next appt. June 5. His onc did mention that had his numbers not gone up with the dex reduction, she would have considered lowering his daily thal(she did not say to what amount). Also, we asked for clarification on his type of MM and it's IgG light kappa chain with no M protein detected.
Claire
Claire-
Good luck and keep us posted- food for thought below-
"
CHICAGO, IL - There is no evidence that antioxidant supplements interfere with the therapeutic effects of chemotherapy agents, according to a recent systematic review of the use of antioxidants during chemotherapy, available in the May, 2007 issue of the peer-reviewed journal Cancer Treatment Reviews. In fact, they may help increase survival rates, tumor response, and the patient’s ability to tolerate treatment. This conclusion has important implications for patients whose oncologists discourage the use of antioxidant supplements during treatment. Until now, their concern has been that these supplements may counteract the tumor-shrinking abilities of the chemotherapy.
David
Thanks, David, for that aricle. I would like to add that curcumin (I know, I know, the woman is OBSESSED! ;-)) protects our bodies from the toxic effects of radiation therapy and X-rays in general (plus, from pesticides and DDT and dioxin...the list is LONG). Anyway, I recently had a full skeletal survey (no lesions, btw), and was happy to know that curcumin was protecting my body during that process. I had about 12 X-rays done. So, that is something to keep in mind, for instance if we are facing radiation for a plasmacytoma etc. Sometimes (frequently!) I have the feeling that our hematologists are a bit behind the times....and sometimes (!) it's up to us to "educate" them. I will e-mail that article to my hematologist, for starters.
Margaret, Florence Italy
Margaret and all-
Understand that I speak more openly to this list than the others
I have now show the study that i reference above around to all of the lists- this article refers to a large study done of hundreds of studies done with supplements and the effect of conventional therapies like chemo and radiation. The analysis indicates that antioxidants both protect the body from the toxic side effects of conventional therapies and make these therapies work better!
I would think that broad-spectrum supplementation would now become standard therapy! I think this finding is incredibly important but I don't get much reaction from the other lists.
And Margaret, for curcumin to have both anti-myeloma effects as well as protective effects...well, you have every reason to be obsessed.
David
I read the entire antioxidant study, which was sent to me via an Italian friend of mine (only the abstract is available for free, online). These researchers did paw through 845 clinical trials from different electronic databases, but they excluded the ones that for instance used synthetic antioxidants, or were not controlled studies. In the end, they took only 19 studies into consideration. Even with this low number, though, the findings were quite significant. At the very least, antioxidants were found NOT to be harmful, but in many cases they were found to be helpful, just as David reported. They reduced the toxic effects of chemo, improved survival rates etc. I wrote a blog piece about it, if you want more details. Or I could even send the entire study to anybody who wants to see it. At any rate, it's time for doctors to let go of the antiquated idea that antioxidants could interfere with chemo etc. Just my two cents.
Margaret, Florence, Italy
Margaret-
Yes, please send me the actual study. I have read several articles about the study but not the study itself. I would like to read the study iself to see if there is any info that we mmer's can use.
Is there anything in the study that can be used as the basis for another patient study (like the curcumin patient study)? For instance, trying to study the effect of antioxidant supplementation during convenional therapy- who takes what, when and what, if any, is the patients current status?
David
Ok, David, I sent you the study. Not sure if you will find what you are looking for, but it IS interesting, regardless.
Margaret, Florence Italy
Margaret-
Thanks for the study- after careful reading of this review, I have summarized the key point below-
"This systematic review, the first to consider the impact of antioxidant supplementation in combination with chemotherapy, provides suggestive evidence that antioxident supplementation helps reduce some adverse reactions including neurotoxicity, thrombycytopenia, diarrhea, thus enabling increase or uninterrupted dosing in patiens who otherwise may discontinue treatment due to side effects."
Anyone beginning conventional therapies need to seriously consider antioxidant therapy during your conventional therapy.
Anyone experiencing side effects such as those mentioned above also need to consider antioxidant supplementation.
David
Also see Ralph Moss's book about antioxidants, Antioxidants Against Cancer. The author lists studies that show the protective effects of various antioxidants during treatment. Moss also cautions against MM patients taking melatonin, due to its immune stimulating characteristics.
I didn't recieve a digest Sunday or Tuesday- did anyone else experience any sort of interruption?
David
Another quote taken from the antioxidant and chemo study-
"This makes an examination of the role of antioxidants in well-designed randomized clinical trials of clinical importance.
While a patient study (like the CPS that we're working on) is not a "well-designed radomized clinical trial" I think that a collection of members experiences on specific topics, like curcumin, would benefit this group. After I figure out the CPS, I will try to design a patient study on chemo brain (memory loss) blood clots, peripheral neuropathy or nerve damage in general.
Does anyone have ideas for other issues to be studied?
David
Cathy and all-
Ralph Moss is a knowledgeable guy re cancer. I get his free e-newsletter each week. His main business is to give you specific info about your dx (which I have not done)-his basic view on cancer therapies is balanced. If a mm survivor is trying to figure out all of the many mm issues then he may be able to help out.
David
http://v.mercola.com:80/b...
Just makes you feel validated- We are not alone, Folks!
Portlandrose-
Though I agree with most of Dr. Mercola's views, I tend to look at the big picture differently. Pharmaceutical co's are for profit. They are shrewd at making their drugs, their marketing, their lobbying of the FDA, their money.
That is why we patients need to be just as shrewd. Countless studies prove the value of "interactive health communication." That is what b-m.org does. People who subscribe to IHCA's live better, longer lives.
David
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