I see Dr. James Berenson in Los Angeles from time to timeas my myeloma specialist. I like him because he is very concernedabout toxicities. When the head of the bone marrow transplant unit wanted to give me Velcade as induction therapy, Dr. Berenson told meat that time he felt it was far too toxic for my level of disease. Thiswas despite his being paid by Millennium Pharmaceuticals at the time togive lectures about mm treatments and Velcade. Since then, he has toldme he has learned to use it, as he uses it at lower doses and combines it with other drugs. I still think it is toxic, and I was going to refuse to use it for maintenance therapy if I got into remission, as he promised. Oh well. It never happened.
Also, he does not like Revlimid, as he referredto it as a "nasty drug". I see so many people like it, yet he does not because he feels it is hard on the bone marrow and has a lot of side effectsthat thalidomide does not. I find this interesting, as certainly other mm specialists see it differently.
One thing he had suggested to me, as the trial is expanding, is Velcade and Quadramet. He told me the advantage is that the patient only has to take Velcade very occasionally, although now I cannot remember how often. Yet I looked up Quadramet, and I was very surprised, as I immediately thought this is a drug I really do not want to take. I am sort of surprised that Dr. Berenson thinks it is good, but I guess he feels the Quadramet is less toxic than Velcade. He would know way more about than I do, and like I said, he really does consider toxicities of treatment. (He does not consider costs to the patient, which I do not think is very good. Also, he is not always right, so I am certainly not trumpeting that he is the best mm specialist in the world.)
I just thought I would like to post about this here.
Alex Maas
I barely qualified for treatment of MM--no bone breaks, real bone pain. In fact my mProtein was 5.5 at its height, .5 over the required amount for treatment. I believe this had some bearing on how I reacted to Velcade. I had three rounds, but not heavy ones. No real side effects from it. I was tired the evening of the treatment, then, after drinking a gallon of water, and detoxing by sauna, etc. for a day I found the Velcade no longer affected me. I was also able to bring down my mProtein significantly with each injection. I just had a transplant (autologous) and discovered what "real" side effects are from chemo with Melphalan. Very bad. But I'm getting past it now. The Velcade, however, was very good for me.
Sherry-
Something I think is important in your post and also reflected in your experiences outlined in your blog http://sherrywildercancercookies.blogspot.com/ - you built in complementary therapies DURING your conventional therapies and those therapies were low dose and still very effective. Sure, your mm counts were lower than usual but these two facts are worth of note. For anyone considering a more agressive approach I think your experiences are key.
After my diagnosis of MM in October of last year, I knew from intensive research into both conventional and alternative therapies that, in the face of so many choices, I needed to know what I believed about the healing of my body so that I could choose the therapies that would work for me. This, by itself, is a belief I embraced: that I can know what's best for my healing by being deeply acquainted with the workings of my body through conversations with God and by listening to the signals my body was giving me. I have always been, for example, one who could take half of any medication and receive benefit from it. Thus, I fought every step of the way for the mild form of Velcade, dexamethazone, Melphalan, etc.
The problem came when I was up against the will of doctors at MD Anderson who were certain they knew more about my healing than I did. The dex, which slowly weakened by ability to stand up for myself, was the culprit for me. When I realized this, I fought ever taking it again. I also detoxed in every way I could when I took anything that turned out to be too much. I fought to keep toxins I was receiving at the level that I felt was right for my healing.
Despite this, mistakes were made. I signed up for a trial that I'm probably going to back out of. I did not realize that eating a proper diet would be nearly impossible after receiving Melphalan before my auto transplant. Once again, this indicates to me the need to research ALL therapies and listen with awareness to what I feel "in my gut" about that therapy.
Every day, I work to correct mistakes, which I made in a weakened state, at MD Anderson. I realize now that, for me, going back there would only weaken me further.
I am determined, even more now, that I will always fight for what I believe my body needs. As I am fighting now on all levels whether spiritual, physical or mental.
If you are interested in this approach, read my blog at http://sherrywildercancer.... (I can't figure out how to hyperlink it, so please cut and paste this link into your browser, google "sherry wilder's cancer cookies," or just use the link mentioned in the April 12th, 2007 reply from David Demerson.)
Margaret: I have been diagnosed with MM in Februray 2007. Am going through treatment in MD Anderson now. Scheduled for Stem Cell Transplant in May 2007. Had taken Velcade and Dex fortunately without much side effect. Have not gone thru heavy chemo of Melphalan yet. Would love to discuss with Margatert about her experience of the side effect in the process of taking Melphalan etc. Studying a lot about alternative treatment and am positive about these. My email address is barua25@hotmail.com Thanks Raj
Raj-
After a sct and a short partial remission, I underwent therapy at the Burzynski Research Institute in Houston,TX. If you have any interest go to the beating-myeloma.org site, click on "therapies" then click on "antineoplastons." Feel free to ask me any questions-
Demerson- Please let me know roughly how much it costs in Burzynski's since it is not covered by Insurance. I am supposed to go for SCT in MD Anderson now, but am debating if I should or if there is an alternate way. How was your experience with Melphalan and SCT? - Raj
Raj--I just completed an auto SCT at MD Anderson about one month ago, and I just returned home about two weeks ago. If you have time, try reading my blog at http://sherrywildercancer.... In it I have a day by day rendering of my experiences with the SCT and Melphalan. (You'll have to cut and paste the link into your browser, as I cannot figure out how to make it a hyperlink in this program.) I will say that everyone's experience is different--different people respond differently to Melphalan, apheresis, etc. I also did it as an out patient; some people are admitted to the hospital. I will say that Melphalan tried to kick my butt. I was and still am quite nauseated and weakened by the Melphalan. But my family and I laid hands on the bag before it went in, so I'm sure it could have been worse for me. I saw plenty of folks where that was the case: Melphalan really did kick their butt. But I get stronger every day: detox, detox, detox. I lost my hair from the Melphalan (about 10 days after.) If you've got other questions, please don't hesitate to e-mail me at swilder@ccccd.edu. Or we can talk through this forum.
Raj-
RE the cost of antineoplaston therapy, several things.
My experience is from '97,'98,'99 and things have changed since then so take this in mind. An appointment at the clinic is the best way to get the best info.
Also, there are related costs to the therapy- travel, hotel, testing at home. Keep these in mind.
For the first 10 months of my therapy, I was charged 14,000 per month- I paid 7000 and 7000 was billed to my insurance- 10x7=70k. For the next 7 months, I was on capsule therapy and was charged 2000 monthly-7x2=14k.
Important to keep in mind- you and your dr will know after 3-6 months if the therapy is working (I saw lesions shrinking on the mri films each month- less bone pain). You will not spend 100k before you find out if the therapy is working.
The clinic is "integrative" in there practice now. You should meet with them to make a sound judgement.
David
Raj-
Also- I had no melphalan. My chemo experience is 5 rounds of VAD (no response) 2 of cytoxan leading up to the bmt- my bmt results were 9 months of partial remission then relapse. Local radiation then relapse. Told nothing more could be done for me. I then began antineoplaston therapy. Complete remission after 17 months. Still in cr in 4/07.
David
Dear Raj, I just wanted to point out that I have had NO conventional treatments so far. No chemo, etc. My ONLY treatment for MM has been curcumin, which is the active ingredient of the Indian spice turmeric. I have also made some changes in my diet, and I take a few other supplements, but only non toxic stuff. I will write to you privately, but I just wanted post this publicly so there would be no misunderstanding. Margaret
A comment on what Sherry wrote the other day (somehow I didn't read these messages, so I am going through them now). About listening to your gut. I agree wholeheartedly. In my case, in January 2006, I just KNEW that curcumin would work. And for me it did. Whatever treatment you decide on, you have to BELIEVE in it. I am sure it makes the treatment more effective. And if that sounds nuts, just think of the placebo effect (there is a historical episode about that, and I read about it once, but forget the details now). Not that I think curcumin or chemo drugs are placebos. Quite the opposite. But I do think our mind has a lot of control over how our bodies react. Whenever I have followed my gut, I have made the right choices. Just my 2 cents. Margaret
Margaret--I admire people who treat cancer alternatively rather than conventionally. I have a friend who is treating thyroid cancer without conventional medicine, and she is, by the way, doing great. But I know it's not easy to go alternative. Doctors can often be more than angry with patients who treat their cancers alternatively. Even family and friends can be so afraid that alternatives won't work that they'll drive a person into the conventional with fearful pleas and emotional manipulation. My approach has been integrative--that is, a combination of conventional and alternative. And now, I've decided to do what I knew I'd do even when I was signing the papers: back out of a trial in which I was to do two transplants. I did one, and I'm done now. Now I'm ready to go completely alternative. Alternative medicine and prayer, I know, reduced the side effects and gave me wisdom about meds I was to refuse continued use of (such as dexamethazone). I know alternative treatment is working for me again.
I promised myself that if I had ever got cancer, I would go the alternative route. I looked for information on the internet. It is really hard to validate most of it. I checked out one clinic after another, but I never found one that could tell me they successfully treated a myeloma patient.
I have no idea if this is correct or not, but I think that maybe their techniques--if they indeed work--probably work for solid tumors better than for blood cancers. Please understand I am NOT talking about antineoplaston therapy. I consider that a medical treatment--I just do not know how many people it would work for. I put it in the same class as the mm vaccine that was once being developed. It actually worked for some people, but it was abandoned as it was very expensive, and it did not work for that many people.
I think that myeloma is a cancer that is much harder to get rid of than solid tumors. Of course, if a solid tumor is small enough, it can just be cut out. But I meant even other things that like certain drugs or supplements that might work against solid tumors, might not work for us for all sorts of reasons. But, I also think that it is entirely possible we might be able to slowly get rid of it over an extended period of time, the same way that it developed.
What is not understood by most people that is even when we are in "remisson" from a stem cell transplant, our bodies are still full of myeloma cells. I think that if we achieve remission by some method, if we use other methods to keep killing the cancer cells, it might actually get rid of them entirely.
This is a little contrary to the opinion of some doctors, who have mostly abandoned post-SCT maintenance therapy. I am not quite sure this is the right thing to do. But my thoughts on it would fill many pages. In short, I think that maybe at this point if we then adopt techniques from alternative therapies, the cancer may actually go away completely and never come back.
Finally, about Velcade. It can have a lot of side effects, on one hand. But on the other hand, supposedly specifically designed to block certain pathways are generally less toxic than those designed to kill everything. This is not guesswork or my opinion--this is a statement of fact, actually. Even so, I am unsure of the long-term effects of Velcade. But I would guess that they are not bad, since
the anemia it gives most patients, goes away pretty quickly. The anemia that Revlimid can give you can be permanent.
alex-
What is not understood by most people that is even when we are in "remisson" from a stem cell transplant, our bodies are still full of myeloma cells. I think that if we achieve remission by some method, if we use other methods to keep killing the cancer cells, it might actually get rid of them entirely. This is a little contrary to the opinion of some doctors, who have mostly abandoned post-SCT maintenance therapy
I believe that cancer stem cells are the reason for your reasoning above. I also with you that "we use other methods to keep killing the cancer cells" this is why I pursue the complementary methods that I and others on this list do-
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