Shirley,
I have been fighting myeloma IgG light chain for seven yers. I am not a doctor but I am a scientist. My goal has been and still is to control not cure the myeloma, since currently there is no cure and by chasing a cure you may actually lose the battle not to mention have a lower quality of life. I believe by setting a goal of an acceptable quality of life which means to me keeping pain to a minimum, staying out of the hospital (no pneumona, major infections), and being able to lead for the most part a normal life-working and enjoying my family, you will have the maximum quality and life spam.
These are large goals and myeloma is a complicated disease. As a scientist I believe you need to use every weapon at your disposal that proves useful to your myeloma, that certainly includes approved myeloma drugs as well as things like curcumin. The key to this statement is proves useful to you in controlling your M-spike. Everything I have tried I have tried to do in a scientific manor. I never added more that one drug or herbal at a time. I try to start at the lowest dose and increase until it started to work or the toxicity was too great, or I reached the maximum dose.
What have I learned? Curcumin up to 2 grams/day by itself does nothing; however, as little as 500 mg curcumin (without bioprene) in combination with 150 mg thalidomide is very effective in as little as two weeks. The thalidomide alone, at this same dose 150 mg, had stopped working before I added the curcumin. After adding 500 mg curcumin, each additional month I added an additional 500 mg curcumin until I reached 2 grams of curcumin with the 150 mg thalidomide and saw no additional rate of change of my M-spike over the original 500mg curcumin plus the 150 mg thalidomide, which is where I returned. I took the thalidomide at 10 PM at night and by 7:00 am the next morning I was wide awake. I took the curcumin with my lunch. Good things about thalidomide; I got the best night sleep every night! Which if you want to fight depression and lead the most normal life possible is very important. Suggest starting at 50 mg thalidomide the first night and increase 50 mg every night until your target dose is reached. I found it much easier to adjust to thalidomide this way, give it a week or two. After three years on thalidomide I do have moderate neurapathy, probably permanent, but for me that was a fair trade for three high quality years.
I started on Revlimid when after three years the thalidomide-curcumin combination stopped working and my M-spike started to go up over seven months. I started at 15 mg Revlimid for 30 days, to 20 mg for 30 days, to 25 mg for 30 days, all without dexamethasone. There was no improvement in my M-spike numbers nor my rate of change with Revlimid alone. The next month I added 500 mg curcumin to the 25 mg Revlimid. My M-spike that month stopped increasing and stayed exactly the same value for the next four months. However, my M-spike did not go down like the thalidomide-curcumin combination. Increasing curcumin over 500 mg to2 grams made no improvement over the 500 mg.
There are many new therapies in clinical trials today that if nothing else can provide great hope to extend life until hopefully some day a cure can be found. When everything stops working for me that is currently approved I will not hesitate to sign up for a clinical of my choice.
I hope my experiences helps someone. Just like all of you, I want to not only help myself but anyone suffering or confused from this terrible disease. Hang in there- when I started seven years ago, the average life span with myeloma I was told was 3-5 years.
Terry
Terry, I think your scientific approach is the best one if a person has not progresseed too far with the disease. (In our case, my husband already had so much physical damage that we didn't feel we had time to proceed slowly and try one supplement at a time). A question: when you played around with the dosages of conventional drugs, did you do so with your oncologist's approval? Or did you have to fight to get that kind of leeway? We are at a standstill with our onc. He won't even agree to change the Dex dose to once a week instead of a block of four days, saying that there is 'no scientific evidence" to show that dosing like that would be effective, and that with someone as young as my husband we should be using the maximum dosages to achieve good response, and not be worrying about side effects! The doc's main issue, I believe, is that he is offended that we are seeking second opinions, researching, etc. He disagreed with some of the things we reported from the Dana Farber consultation we had, and he put it down to "differing opinions" - as if his opinion, as a hem/onc in Cyprus (country with a total pop of 750,000), was just as good, if not better, that that of an MM specialist from Dana Farber. Don't know how to proceed from here. When we first went to this doc we made it clear that we planned to use him as our link to doctors in the US (he'd worked in NY so understands the American medical system). So it should come as no surprise to him that in fact we are making contacts with other doctors. But the man has an oversized ego, and here we are, two pipsqueak nonspecialists, trying to argue with his august opinion. Meanwhile, I no longer even trust him to tell us the truth. Before, when I raised the issue of ONJ, he said that he has had patients with ONJ who go on taking Zometa because the alternative is worse. Last meeting, however, he claimed that he had never in his entire career had a patient who developed problems of any kinds from Zometa, and that we should stop worrying about it. I didn't call him on the contradiction, because it didn't seem worth it at that moment, but if he can't even tell the truth about patients who have had ONJ, my trust is gone. My husband was taken aback as well, And, for better or worse, I think my husband needs to have a sense of faith in his doctor - I believe that this mind body connection is important. I have to admit I feel stymied.
Lisa,
I've found it helpful to take notes when visiting my doctor. Maybe you're already doing this, too. I think the onc. will measure his words more carefully if he knows that you're writing down whatever he says. If there is any confusion, you can refer to your notes and say that on a certain date he said such and such. He'll have to pay attention to that.
As for consulting with a myeloma specialist, that is your right. Your husband has to live with the consequences of medication side effects and treatment decisions. Your onc. does not. Your husband should decide which therapy, based on informed decisions, he wants to pursue. I've found the following article really worthwhile and hope you do, too:
http://www.myeloma.org/ma...
Lisa-
Clearly you and your husband are frustrated with your onc- and while people like me with exclaim that "YOU ARE IN CHARGE!" that fact it that you need to work with this onc as you live in Cyprus and he is your best/only choice.
Possible ideas-
1) Can you set up a phone conference between your onc and Dana-Farber? Perhaps if your onc hears about low dose dex from another onc, he will be okay with it.
2) RE the possiblity of ONJ from zometa therapy- please check my beliefs but this side effect is statistically rare (anyone else know?) and I believe that the infusion time, dose, frequency make a difference.
In other words, possibility of onj is reduced if instead of zometa is infused over 4 hours instead of 2 and once per two months instead of
once per month kind of thing-
I hope these ideas help.
David
Thanks to all for the good suggestions and inputs about dealing with doctors etc. Cathy, that article is excellent: thanks so much for the link. Taking notes is a good idea. I have been writing things down the minute we get home from an appt, but that's not the same. I had thought from the first about taping appointments, but my husband throught it was likely to create even more hostility than already existed so we never tried that! David, the idea of a phone consult between doctors is an excellent one. For the moment, the thought I had had was of asking our onc which US specialist he would feel most comfortable working with, and if it is someone we agree on then he might feel that he has retained more control of the process and feel less threatened. If I can find that research on low dose Dex and Thal that will also help, I think. I have to apologize for venting on this forum - it is one of the few spaces where it feels safe to do so. It sounds like a lot of you have much better relationships with your docs than we do, but indeed the reality is that we don't have too much choice so have to work within the parameters of our situation. I am trying to set up a second opinion over at the oncology center here and I've been hearing some terrible stories about things that have happened there; even law suits involving cases where patient histories were reviewed by outside doctors and it was discovered that entirely the wrong treatment was prescribed; patient records were not adequately kept, etc. At the end of the day, while we do want to like and feel comfortable with our doc, we also want him to be as competent as possible within the sphere of conventional medicine. It's a balancing act.
Lisa-
Do not apologize at all for venting on this site!!! Yes, I like to read studies, discuss experience, therapies, etc. But please know that social support, talking, sharing, etc. is an extremely important therapy.
Re my relationship with my docs and oncs- It has taken me years of appointments and many drs before I got to a point where I can work with my doc effectively. After going through five (5) different oncs I had to settle on my hem-onc brother-in-law. He has to put up with me and he knows that I won't sue him. Developing a solid working relationship with one's onc is as important and difficult as figuring out a life-style or therapy.
David
David,
Many thanks are due you for creating this site, and for its openness to venting among other things!
Ok, if it took you five docs to find one you can live with, I shouldn't be so discouraged (except, I'm not sure we have five here to go through!) I am hoping that over time our onc will accept that we want to approach this disease as a partnership. I have to remember that many cancer patients here are not even told that they have cancer! Only the families are told. It is still standard practice, from what people have told me. So, it has to come as a shock to him to deal with people like us.
Cathy - I have taken notes since Day 1 of John's MM. Even before we knew it was MM I was taking notes on the spinal fx. I can go back over the years and review all that was discussed about his treatment, etc. and that is invaluable documentation. Sometimes I have very little to write, but that is ok. The doctor sees me with my notebook and pen and I think that is important.
I keep all of John's records in a binder - my notes, blood test results, etc. I am on my 3rd one! I have started a new one with each different direction his treatment has taken, otherwise I would need a wheeled cart to carry all of it around and after a while the old information is not as relavent, but still invaluable to have as a research tool.
About coffee enemas, John also did them for a long time while under Dr Robert Rowen's care. He also said he enjoyed them and they were therapeutic. Eventually he stopped, don't know why. He was working and I think it just became too time consuming. Or maybe the next doctor did not recommend them as highly as Dr Rowen. You know how that goes!
Barbara Pavel
Caregiver, John Pavel
dx 1/03 kappa light chain, comp fx L1 11/02, T5&T7 8/06, T6(kyphoplasty)10/05, various alternative treatments from 1/03-9/06 Started 8/06 - thal 100 mg daily /dex 20 mg weekly, Aredia once a month,coumadin for DVT 3/0
Lisa,
I think you're wise to ask your doctor which US specialist he would enjoy working with. He may well say, "None." But that's not really an option. Better to get the topic on the table now and deal with it.
I wish I hadn't been as trusting of my previous doctor. I should have had consults with an MM specialist, but didn't. My doctor, I believe, was so disgusted that I wanted to pursue just nutritional therapies that he withheld all comments about my health status. He would say, "You're stable; see you in two months." This, even after I mentioned a symptom that I didn't understand. I was definitely too trusting and heard what I wanted to hear. When I went to my new hematologist, I really got an earful about things I should have been doing. Two heads are better than one. The myeloma specialist can give you perspective that you may not get from your doctor in Cyprus. There are only about 20K new US MM cases every year. In Cyprus, that number has to be minimal. All the more reason to speak with a specialist who has seen more cases and can give you perspective. Having a clinical study to show your Cyprus doctor may make him feel more comfortable about following someone else's plan. CYA, etc.
Cathy
Cathy, probably it is not an asset to be so untrusting of docs as I am, but I figure no one will care as much about our situation as we do. I"ve had, or have witnessed, too many bad experiences in the past. (My mom went from doctor to doctor for years, and was dismissed as a "hysterical housewife", till it was finally discovered that she had non-Hodgkins lymphoma - a little too late to do anything about it.) I became a little alarmed yesterday when i learned from a friend that someone she knows with breast cancer is seeing our oncologist. Why would a hematologist/oncologist be dealing with breast cancer? I guess the population is just so small here that everyone does a little bit of everything. Not encouraging. I'm just going to have to do my research and find ways of getting the best advice possible. My current thinking is to also arrange a consultation with Dr. Berenson, who as I understand it no longer does transplants. I would like to have the full spectrum of opinion, from the transplant camp as well as from teh anti-transplant camp.
My relationship with my Oncologist is good. He allows me to be honest with him when I am introducing something new like curcumin and I allow him to tell me when something is not working. However, I did have to leave my first oncologist because he was going to be in charge as he told me and my wife at the top of his lungs.
From what I understand, the risk of jaw necropathy from Zometa (nothing to not take seriously) comes from poor teeth and gums due to existing bacteria. If you can improve the condition of your teeth and gums in my opinion you can reduce the risk. I get a teeth cleaning every three months. After five years on Aredia (a previous bisphosphonate like Zometa but not as potent), I have reduced my timing to once/90 days instead of once/month.
Hello all! I read Terry's (and then, Lisa's) post with interest. I am not a scientist, but I too have taken a scientific approach to supplementation. For the first months after my diagnosis (MM, in Dec 2005), all I took was curcumin (eight grams). Then I decided to add a few things, but always one at a time. I have blood tests done every two months when I am testing something. I have recently found the quercetin-curcumin combo to be a good one. They made my IgG count drop again. This summer, I am going to test curcumin caps without bioperine. This fall, I will add Chinese skullcap (if you know nothing about it, please see my blog) to my intake. The "One at a time" approach is the best one, if you want to figure out what is working and what isn't. In the case of Lisa's husband, of course, things are different. But those of us who are "lucky" enough to be in earlier stages have a chance to try things out. Of course, I am writing about substances backed by science. I don't take anything toxic or controversial. And I too would like to help others in my situation (or a similar one), that's the idea behind the creation of my blog. Anyway, interesting post. Thank you. Margaret, Florence, Italy
Does anyone know of any research out there on using Dex one day a week instead of the traditional 4 day block? I'm aware of the recent studies showing that low dose Dex is better than high dose Dex, but when they say low dose, do they mean a block of four days? or just a cumulative total of 4 days a month?
I also want to look for research on lower doses of Thal, so if anyone can point me in the direction of anything I'll be grateful.
Lisa - I think I may have some information, but can't quite put my hands on it now. I will keep looking. I do know it came out around March of this year that the 20 mg once a week was just as effective as the 4 day 40 mg regimen. John's oncologist just went over that again with John on Wednesday, saying John was ahead of the curve in wanting to do his dosage that way. I believe the guidelines came from Mayo Clinic so you might want to search there.
If any doctor insists on the 40 mg 4 day dosage of dex I think he or she is way out of touch with myeloma treatments or just slow to accept change. Why continue to prescribe a treatment that is so physically and mentallay devastating to the patient when a lower dose is just as effective with less trauma.
Barbara Pavel
Caregiver, John Pavel
dx 1/03 kappa light chain, comp fx L1 11/02, T5&T7 8/06, T6(kyphoplasty)10/05, various alternative treatments from 1/03-9/06 Started 8/06 - thal 100 mg daily /dex 20 mg weekly, Aredia once a month,coumadin for DVT 3/0
Barbara, thanks and please do let me know if you find that research. So far I have found information on that study with low dose Dex but I am having a hard time finding detials about what "low dose" means. Even the study protocol i looked at didn't specify! I think I have to order the actual publication from Blood to find out. If I do that I'll share it here. The thing that really bothers me is the disregard for quality of life issues. It doesn't matter to the doc if my husband is flattened for one week out of four and then spends another couple regaining his strength, but it sure matters to us! Especially since he's doing so well as far as numbers go, you'd think we'd have more leeway to think about QOL. If his numbers were not looking good then we'd be more anxious to focus on response and care less about what it took to get there, but at this point it feels like it is a power thing with the doc. The human ego is a marvel to behold.
Even on the 20 mg once a week, the dex is hard on John. He manages to function but his voice gets very weak and shaky, his hand tremor gets worse and for 3-4 days he sleeps half the day away, and says he feels "weird". It is still better than the 40 mg 4 day regimen though! He only did that once, and lowered the doses. I think he actually takes 16 mg of dex, too, not 20 mg but has not shared that fact with his doctor who is pleased with his progress on the 100 mg thal/"20" mg dex as he believes it to be.
Barbara Pavel
Caregiver, John Pavel
dx 1/03 kappa light chain, comp fx L1 11/02, T5&T7 8/06, T6(kyphoplasty)10/05, various alternative treatments from 1/03-9/06 Started 8/06 - thal 100 mg daily /dex 20 mg weekly, Aredia once a month,coumadin for DVT 3/0
Nobody can force you to do anything you know. If you do not want to take as much dex, just do not do it. Dr. Durie told me that in one of his earliest uses of thalidomide, the patient sheepishly admittedly she only took 50 mg every other day, instead of 50 mg every day, as he prescribed. And it was successful for her at that dose. Dr. Berenson has told every oncologist for years that there is no point in using 40 mg 4 days on 4 days off, and it is just as effective at 40 mg 4 days on 10 days off. I believe there are studies that did show this. I do not have them at my disposal. And he has said more recently, one day a week at 40 mg seems to be enough for a lot of people, or maybe even less. Dr. Berenson, who is a myeloma expert, told me that there is no standard way to take steroids at all, despite what it seems certain on oncologist is telling you. You can take them pulsed or every other day. As for ONJ, though, Dr. Berenson has had patients develop ONJ while on Zometa and keep on the Zometa and have the ONJ disappear.
He is a great proponent of Zometa, as he said the risk of bone damage is much more severe than any risk or even consequence of ONJ. But, generally, he is very aware of risks of almost any drugs, so he must feel the benefit of taking Zometa outweigh the risks. He has told me about the problems of Revlimid, Velcade, and dex over the years, and he still watches all of these carefully. I guess he looks at Zometa differently, despite the warnings of the Mayo clinic and the IMF. Also, the Mayo clinic did a small Rev/dex study with 40 mg 4 days onf 4 days off..and he was surprised that they would still use this much.
It seems they are very concerned about the consequences of Zometa use but not as concerned with the consequences of dex. I am no scientist at all, but I think the consequences of dex use, both in the short term and long term, are severe. For me, (but I am 48 almost now), with relatively good teeth, I am willing to accept the risks of Zometa actually. I have had some other benefits with the drug. Before mm, my feet and back used to hurt all the time..nothing to do with the myeloma I think. Now they never hurt at all. A good side effect, in my opinion. At any rate, it is your body, and nobody can force you to do anything, in my opinion.
Alex
a.maas@cox.net
Terry-
If I understand your post, you have found your mm improves with a combination of thal and curcumin and you carefully manage the dose of each?
I need your help in designing the CPS to allow your formula to be included- a patient in the study needs to be able to explain what you did in your post in the CPS- please email me offline- thanks
David
Terry Mazer
First, I have some questions:
For David: what is sdi?
For:portlandrose: What are the details of your mother becoming paralyzed? Is she still paralyzed?
For Terry: Why do you take the curcumin without the bioprene?
I think I have something to contribute to the ONJ discussion. I think I am older than most of you and I had an extraction of the one remaining tooth on my upper right side. Something didn't heal for many months. Finally, I consulted with an oral surgeon and dental pathologist. The oral surgeon found some pus coming from one of the sores. He prescribed antibiotics, which didn't heal it all. He went into the gum surgically and sent a sample to the pathologist, who confirmed that there was indeed "dead bone" there.
(necrosis). I then went back to the IMF site (myeloma.org). There are new reports there.
A system of stages has been developed and guidelines given. It is all pretty new and case studies are the basis of most of the information. In any case, for me, I feel the danger of this progressing is more frightening than taking a vacation from Aredia (I had been taking Zometa for two years prior). I did not find any report of the ONJ (which now has been given a new name) disappearing with the continuation of the bisphoosphonates. I did see on the report that a case was cured when the bisphosphonates were stopped for a year.
Thank you all for helpful posts all. I wanted to ask Margaret whether she takes the curcumin in the 500 mg capsules. That means taking 16 of them every day. A lot. from Shirley
Shirley-
SDI stands for "Selective Dissemination of Information." When I developed b-m.org, I wanted to offer some sort of in-depth communication on subjects like therapies, side-effects, mm issues, etc. but I didn't want to call this communication "e-newsletters." A librarian friend used the term sdi, so I adopted it.
Members who request 1 or more sdi's are emailed each about once a month- a topic of my choosing, more in-depth-
David
Shirley, I do take the 500 mg capsules. Yes, that is 16 capsules a day, divided (when I can) into two doses. I didn't like the looks of the one gram curcumin pills because they contain too many other substances. Oh, I also take oil capsules, quercetin, and resveratrol. I probably take at least two dozen capsules per day. And I am planning to add more things, too, based on my research into non toxic substances (plant extracts) that have been used for centuries in Ayurvedic or Chinese medicine and have been shown (in recent scientific articles, a few co-authored by Ken Anderson, as I recall) to kill off MM cells. I guess soon I shall stop eating altogether, and just dine on pills! ;-) Margaret, Florence, Italy, (just kidding!)
That comment made me laugh, Margaret. Okay I checked. The one gram pills I told you were cheap has this labeling: Other Excipients (I am not sure I have ever seen this word before): Microcrystalline cellulose, HydroxyPropylMethylcellulose, Sodidum Starch Glycollate, and Colloidal Silicon Dioxide. I guess these are probably not healthy, and they must serve to keep the pills together. These seem to be plant-based, and the last seems like sand to me. If you look at the other labeling on the bottle, it seems to be meet some kind of quality control standard, which could be some kind of B.S. . I will risk it with this. But it is a personal choice.
Alex,
Thank you for making this comment. I did a little research on the "excipients" in the one-gram caplets from AFI. The one that bothers me the most is "colloidal silicon dioxide." Turns out that the silicon dioxide (sand) particles are nanoparticles, human-made and smaller than we would likely find in nature. Some recent research on nanoparticles suggests that they are capable of traversing cell walls, possibly resulting in cell damage or cell death. Personally I'm not comfortable with that, and I think I'll finish up what I have and stop ordering that brand.
Looking further, silicon dioxide or silica (same thing) is listed on MANY of the other supplements that I take, even the multivitamin caplets. Doesn't say it's "colloidal," but maybe the government doesn't require them to admit that. Not sure what to do about those supplements.
Don
Terry, I was wondering why you took the curcumin without the bioprene? My understanding was that is was not absorped without the bioprene. Thanks for the info.
Mary Jo
I looked up Silicon Dioxide, and what it can do is frightening. I had no idea, actually Thanks Margaret and Don. I would not blame Doctor's Trust, as they only sell the American's Finest Brand I have. I cannot tell you how many bottles I have. I am going to send it all back. Meanwhile, it seems here is a good source, but it comes without bioperine. I do not necessarily need you need that, but if you do it is bioperine is very cheap. http://www.turmeric-curcu...
The Doctor's Trust site is down now--they might have something else.
Alex Maas
a.maas@cox.net
They sell two other brand's at Doctor's Trust, Doctor's Best and also their own brand Doctor's Trust. They are similarly priced to America's Finest. I will send all the other bottles back for exchange. Thanks everyone for the heads up. I almost always read ingredients. The labeling fooled me..oh well.
. As if I would ever know about this on from the acor list. This is really great. I have not taken it for a few days. You can even send opened bottles back. I will just buy something else in the meantime. I have also ordered from the other place I mentioned. http://www.turmeric-curcu...
Uma Aggarwal, Dr. Aggarwal's wife, but she has 90 capsules of 500 mg for
16 dollars. This is about what most places sell if for, and I think for us, it is too much. Here is her contact information.
Uma Aggarwal; Indogen Inc; 832-563-1940 (mobile); umaagg@yahoo.com
To all taking dexamethasone. First of all the new low dose option. The clinical at the Mayo, where the low dose got its name, was 40 mg/once per week. That is what they were calling low dose instead of the "pulsed", 4 days 40 mg on 3 days off. However, what oncologists are actually using successfully is 20 mg and even 10 mg once/week in combination with Revlimid or thalidomide. You try it for a month at 20 mg dexamathesone. If your M-spike moves in the correct direction it is a good dose. If not, you need to up the dexamethasone. Normally they will not go down to 10 mg dexamethasone unless you cannot tolerate the 20 mg.
Ok, help with tolerating the dexamethasone. When I went through the first thalidomide-dexamathasone clinical January 2001 at the Mayo, we were told to take Previcid 30 mg (heavy duty prescription acid blocker)with the dexamethasone. Dexamethasone is very hard on the stomach. When I started the dexamethasone a few months ago (20 mg once/wk, taking an acid blocker wasn't mentioned, so I didn't use it and I was having similar problems as many of you have metioned. I started taking the Previcid about three weeks ago, starting the day before taking the dexamethasone and two days after the dexamethasone. All my symptons, heart ryhthmn fluctuations, heart burn, have stopped. All I have left is nasal drippage the day after the dexamethasone which only lasts for the day.
Hope this info helps.
Terry
Hello everyone! I think this may have been mentioned before, but I thought I would mention it again (you never know): the anti-MM effect of Dex is enhanced by curcumin. Something to keep in mind and perhaps discuss with your doctor. If you haven't read the Dex-curc-MM study, I have a link to it from my blog. Or just ask me. I'd be happy to provide details.
Have a great Sunday!
Margaret, Florence, Italy
When we recently presented our onc with a list of all the supplements Andreas (my husband) is taking,for his files, he was not pleased - although we had already told him about most of what we are doing, going by the principle of full disclosure despite fallout (mostly - we haven't detailed the Gerson diet, but then, he has made clear that he thinks diet is irrelevant).When I reminded the doc about the study Margaret mentions, which I had already given him, about the anti-MM effect of Dex being enhanced by curcumin, he responded, "but do you really WANT to enhance the effect?" Then he got a phone call and the appointment was over. Sigh. Damned if you do and damned if you don't. Supplements might interfere with conventional meds - but if they potentiate them, that is also bad.
Oh well. We do another blood test and electrophoresis test tomorrow, and I'm keeping my fingers crossed for good news. The proof is in the pudding.
Lisa-
Yes, your onc is frustrating though I think that full disclosure is important to your therapies and interaction.
"When I reminded the doc about the study Margaret mentions, which I had already given him, about the anti-MM effect of Dex being enhanced by curcumin, he responded, "but do you really WANT to enhance the effect?"
If it were me, the answer to your onc's question would be "yes, our goal is to take the lowest dose of dex and still achieve the desired affect."
I understand that advice after the fact is little help- I'm just offering an opinion.
David
Margaret,
I would like to know about information (articles or personal experience) you have on dexamethasone curcumin synergy.
Thank you.
Terry
Sorry, I am in a terrific rush this morning (my parents arrive early this afternoon from the States), but just to answer your query, Terry, this should be the MM-Dex study: http://bloodjournal.hemat...
Margaret
Florence, Italy
Thanks Margaret. I read the article. It appears curcumin helps to limit the increase in resistance to dex. Have you seen anything that actually talks about a synergy when the two are combined?
Terry
All- I am not an onc certainly but I can't help noticing some common themes here.
First comes Terry with-
1) "However, what oncologists are actually using successfully is 20 mg and even 10 mg once/week in combination with Revlimid or thalidomide. You try it for a month at 20 mg dexamathesone. If your M-spike moves in the correct direction it is a good dose. If not, you need to up the dexamethasone."
Then comes Margaret with-
2) "the anti-MM effect of Dex is enhanced by curcumin."
Terry mentioned his success with thal and curcumin combined- And of course there iis Lisa in Cyprus consistently mentioning the possitive effect of supplements on her hubby's numbers.
I must also again mention the study citing the analysis of multiple studies citing the possible benefits of antioxidants during conventional therapies to both enhance the efficacy of the therapy as well as reduce the dose of the therapy.
The positive effects of conventional and non working together (integrative and complimentary therapies) is the goal of this site,listserv, our interaction.
David
I am becoming a believer in this synergy of conventional and nonconventional approaches (although I'm desperate to get my husband off the conventional stuff before PN or worse sets in). Alternative methods often work slowly, so if conventional drugs can do the necessary job quickly, that's good - and then maybe the alternative stuff can hold the fort. My big hope.
For Terry: is there ANY published info ANYWHERE about usage of 20 or 10 mg. Dex? I can't find anything. I found the abstract of the low dose dex study and will take it to our doc tomorrow, but that still refers to 40 mg. once a week (our onc told me a couple of weeks ago that there are no studies about the usage of dex once per week; guess he'll have to revise his opinion!) Any ref to a published source for 20 mg would be great.
Lisa,
Dexamethasone at 20 mg or even 10 mg (if there is a response) is being used in combination with thalidomide or Revlimid by some of the best hospitals including the Mayo. I would encourage you to call any of the top hospitals including the Mayo if you want to hear it yourself. My experience is an oncologist will call you back. The switch from pulsed 40 mg dexamethasone was just in the last two months when the Mayo showed in a clinical it was no better than 40 mg once/wk with less side effects. There is no cure for MM so the game is to get the MM stabilized at some level and get with a drug/non drug regime that gives you a reasonable quality of life and not to over attack the MM. Reasonable is the key word, not perfect. I got used to living with 150 mg thalidomide at bedtime. Other than the constipation, I actually enjoyed the sleeping effect. I am getting used to 20 mg dexamethasone once/wk now that I have added Previced 30 mg Previcid the day before through two days after to control the heart burn. Only the person going through this can decide what they can tolerate. The caregiver has to understand things will never be exactly the same and provide the support to allow things to be different but ok. I guess the most important thing for me was getting the MM "stable" so I could concentrate on living. Getting MM stable is something you will have to do several times as the disease progesses which has been my case. Terry
I was fortunate to have my local oncologist when I was diagnosed pay attention toe what Dr. Berenson had said for many years--that there is not reason to use 40 mg of dex 4 days on 4 days off. In his recent lecture to our group, he once again told us he still keeps telling doctors that. The original Mayo clinic with Revlimid was with this amount and reported few side effects. Since he just did not believe it, he called them up, and there were the normal side effects with too many steroids. His usual protocol has been 40 mg 4 days on 10 days off or 20 mg 4 days on 10 days off with 1000 mg of Biaxin per week. In his recent lecture he talked about 40 mg once a week, but I think that might be as low as you can go. I tried it less frequently, and it did not work for me. Dr. Berenson is a great believer in using Medrol, as the side effect profile is much better, and he said who is really much happier is the spouses of the patient. You normally use this once every other day, I think, but I squawked about it, as I am careful to watch my blood sugar on dex days, and he told me there is no standard way to take steroids. Whatever the dose you take, you just add them up and can divide it in any way you want. every day, every other day, or pulsed, if the amount adds up to the same. For example, as in above, 40 mg once a week, would be the same as 20 mg 4 days on 10 days off. Now that I think about it, I think you might want to take biaxin with that amount. Dr. Durie is on the same page with Dr. Berenson about 40 mg once a week with biaxin I believe, and Dr. Berenson learned about Medrol from Dr. Durie. I think in all of this you could probably find something that worked. Once again, once you go too low, it really does become ineffective. I tried it once a month for a while, and it did not work at 40 mg 4 days on once a month. But there is an oncologist at the same clinic who is still using 40 mg 4 days on 4 days off. I find this unconscionable. I met a woman at my local support group who had just been diagnosed with myeloma. She was devastated enough with the diagnosis, but so much dex was what she really could not tolerate. I told her she needed to switch doctors.
I believe this information should really be helpful to someone here.
Where I used to post this before, some people seemed to appreciate it.
Also, I have found that if you just simply avoid anything high on the glycemic index (use a diabetes site) while using dex , you will find ALL the side effects much lower, not just the blood sugar problem.
Alex Maas
a.maas@cox.net
I am sorry, as I do need to add that I meant steroids alone or steroids with Zometa and biaxin, not steroids with thalidomide or Revlimid, both which I plan to avoid as long as possible. I am crazy enough without using either of these two drugs, but if the times comes, I may have to use them are really low amounts.
Alex Maas
a.maas@cox.,net
Lisa-
I know someone was looking for the report on low dose dex last week or so,
but not sure it was on this or the beatingmyeloma list.
I found my copy - it was a report put out by the IMF and was on ACOR dated
4/4/07 titled:
-Findings Show Survival Improvement with Lower Doses of Dexamethasone, the
Steriod commonly used with Revlimid and Other drugs in Newly Diagnosed
Myeloma
-Findings Challenge Traditional Assumption that More-is-Better When Treating
Cancer.
The trial was known as E4A03 sponsored by NCI and lead by the Eastern
Cooperative Oncology Group.
Hope this helps.
Barbara Pavel
Terry thank you for the response. I think I need to call a few places. Right now I am very frustrated. My husband just got back from his Zometa appt.(I couldn't go with him). He gave our onc the study on low dose dex (40 mg. once a week). The onc read it, and said that the abstract focused on toxicity but his concern was the therapy, and that as a matter of fact he intended to have my husband go back on THREE blocks of Dex this month! When my husband protested, the onc said that since my husband is young and strong that he should not worry about side effects and should focus on beating down the myeloma and getting a complete response. (I think the doc used the word "cure" and then backtracked). Meanwhile my husband's hemoglobin is at 14 (last month when it was 14.5 it was from a different lab, and the lab today told him that basically it is the same thing, that different labs will show a 0.5 difference.). The nurse who took his blood asked him how on earth he got his hemoglobin up that high so quickly, and assumed that he had done transfusions. When he said he hadn't done a single transfusion, she was amazed. I am very upset because my reading of the situation is that the doc is feeling threatened (because last time we gave him our list of supplements etc.) and he wants to reassert control. Otherwise why boost the toxicity levels just when my husband is doing better than anyone in the medical sphere here has expected? Especially since as you say the point is not to cure (alas) but to control and stabilize.We have a clinical appt. next week so will discuss all of this, also should get the electrophoresis results on Friday. My husband is very much against taking more than one block of Dex in a month; he keeps telling the doc that Dex devastates him. But as always we have this touchy situation with our onc and needing to not burn bridges.
One other question, Terry, did you ever do or consider SCT? Thanks for the input.
Lisa,
I am not sure my lastv response went through but to summarize the Mayo just reported that they stopped the ARM of the Revlimid clinical with the pulsed dex because there was no efficacy difference from the 40 mg dex/wk and the pulsed ARM had significantly higher toxicity including DVT. If you are currently not including low dose aspirin (81 mg) with either Revlimid or thalidomide with dex it is highly recommended as a prophylaxis to lower the risk of DVT.
Yes I went through SCT at the Mayo when I was first diagnosed. I highly recommend the Mayo Clinic. Their entire staff is first class.
Terry
Thanks all for replies about the low dose Dex study. About prophylaxis for DVT, my husband is on low dose aspirin. BUt he also takes fish oil and curcumin. I have been trying to find out whether that is TOO much blood thinning, but as far as I can tell it seems ok.Whenever we mention our worries about PN from Thal to the onc he reminds us that the real risk is DVT. (It is a little annoying how cavalier he is about QOL issues. Sure, we'd want my husband be alive, but we also want him to feel decent enough to enjoy his life as much as possible. Ok, I know I keep venting about this onc and it is getting old; let's just say he is not our ideal doctor.) Terry, when you did SCT did you get to full remission? How long did it take you to get back to normal? and how long did remission last? Do you have thoughts about whether or not SCT is the way to go vs. trying to manage the disease through drugs etc.? THanks.
Lisa-
RE blood thinning- my understanding is that nattokinase helps to prevent clotting through fibrolytic properties- I am no expert but in my case, this supplement is slowly dissolving my old, skinned-over blood clot. It is doing more than just thinning my blood. Certainly research the internet on this one.
David
Lisa, To find out whether your husband's blood is getting too thin, have his doctor run a PT/INR blood test. My husband's onc can do this right in his office with a finger prick. DVTs are definitely worrysome, but bleeding issues because of too much blood thinning can be just as bad. We've experienced both. I know you're having issues with your doc, but hopefully he'll add this test to the next round of blood work. Good luck.
Lisa,
My thoughts when I chose the SCT was based upon what I knew at the time, 1/2001. There were limited choices, melphalan, VAD, and what appeared to me that after a limited period of time the MM cells got smart and things stopped working. I went through hell for 14 days as my immune system went to zero and came back, went home for a week (my transplant doctor had predicited nine months to recover), and went back to work full time. This is not the normal routine, but I believe several things were in my favor: newly diagnosed and got my M-spike down to 500 mg/dL, used 4.5 million stem cells in the transplant(4.5 million are still in storage at the Mayo), and used two liters of unflavored Pedialyte every day of the fourteen day transplant-this was my addition based upon my belief it allowed me to stay hydrated which is critical for recovery. Mayo was so impressed on how stable I was they tried to get other transplant patients to try it. Two weeks after the transplant when I went back home, I went back on my monthly Aredia. That was the only thing I was taking for seventeen months other than a multiple vitamin. My M-spike was exactly the same before the transplant as after the transplant; however, it remained stable for the next seventeen months. Mayo considered this a failure, I did not.
I believe the transplant is still something you want to have the ability to try; however, it dosen't have to be at the beginning as I did it. However, you have to have the stem cells and the more you treat, the more the disease progresses, the more difficult it may be to get a large number of stem cells, ideally 10 million for two transplants. Remember, the larger the number of stem cells, the quicker you recover, and the quicker you recover, the less likely complications. So in my opinion, the best option is to harvest your stem cells early-this is about a two week procedure-they have to centrifuge them out of your blood over 3-4 days. You want the harvesting done at a center that does at least 100 stem cell transplants a year and has a protocol for MM, not some other blood cancer that they are applying to MM. Practice makes perfect when you pick who you want to do the transplant. The smaller centers can have a higher mortality rate during the transplant. Nationally, I believe it is now 3%, but that can vary by facility. Mayo at the time had never lost a transplant patient. The center should also have indefinite length of storage time for your excess stem cells.
If you have any other questions just ask.
Terry
Thank you Terry for all the info on your SCT. Our next urgent project is to figure out how/where to harvest and store stem cells: now that my husband's numbers are so good, we want to get those cells on ice, and it has to happen this summer or the logistics will be very difficult. I am a little at sea with how to go about doing this from here (we wouldn't consider transplant locally because the medical conditions are iffy; if we get a referral from here our insurance should cover us at least in the UK, although we're not yet sure about the US.) I guess I just need to start contacting centers and asking questions. Is there any kind of compilation of comparative info about transplant centers that exists anywhere? Thanks.
Lisa-
I know of no compilation of transplant info- though if you find a source be sure to distinguish between a peripheral blood stem cell transplant (autogolous) vs a transplant from a donor (allogenaic)- My decision was only based on which of the two local hospitals, Cleveland Clinic and University Hospitals of Cleveland had performed more pbscts annually. Back in 1995, the Clinic was performing many fewer than UH so I went with UH-
David
Lisa,
In have never seen a list. In the US I could name the top centers, Mayo, Dana Farber, MD Anderson, Sloane Kettering, University of Arkansas, Fred Hutchinson. In the UK, I haven't a clue, but most likely if you have heard of them, they are among the top. Once you have narrowed it down, you still need to do due dilligence and visit with a transplant doctor at the center, ask them if they have a specific MM protocol, how many stem cell transplants they did last year (the magic number is at least 100), what is their mortality rate, and do they store stem cells indefinitely. If their protocol includes whole body radiation (WBR), I would suggest pick a different site. WBR was eliminated in the US in 2001.
Trying to compare BMT procedure at MM centers is common question on lists. Perhaps standardization of this procedure and the move toward "procedurealists" will improve the search.
"Michael Lill, director of Cedars-Sinai's Blood and Marrow Transplant Program, says his group uses the Procedure Center for central-line placement and other procedures, such as using a needle to drain fluid from the lungs. "That's something most of us in internal medicine and surgery were trained to do as residents, and while it isn't an enormously complicated procedure, it can have severe complications," Dr. Lill says. "I haven't done one in 10 years, and they are doing six or seven a week." Moreover, the proceduralists use new ultrasound technology to guide the needle, "instead of the old-fashioned blind way we used to do it," Dr. Lill says.
http://online.wsj.com/art...
Oops, I forgot to mention one big mistake when I went through harvesting. Demerson metioned the central line (another name for a Hickman catheter) and it jogged my memory (nobody likes to remember their mistakes is the real answer). Remember I metioned that your stem cells are centrifuged from your blood for 4 hours x 3 days. Well they do that from your entire blood supply. The guaranteed sure fire way is to install a Hickman Catheter in your chest so this runs smoothly. Well I was sure my veins would work just fine without the Hickman catheter so I sort of talked the head nurse into forgeting about the Hickman catheter. It worked fine for one day then every vein in my legs and arms shut down. Of course they had stuck me 20-30 times before they gave up. I looked like I came from a war zone I was so black and blue. To make matters worse I was right in the middle of harvesting and without an immediate fix I would have lost half of my stem cells (5 million). It took some fast talking but I got an immediate catheter installed on the spot in my jugular vein-much less fun than the Hickman. Did I mention that my transplant doc said I was the worst patient she ever had-quite impressive for the Mayo Clinic. In case you missed my message DEMAND a Hickman catheter.
Terry
I posted a comment yesterday (july 4), but it did not appear today. I do not have a copy and was wondering if it was received.
Mainly I was hoping for a response regarding my Dr. prescribing 10 mg of dex once a week along with 10 mg. of Revlimid. However, by reading previous posts, I see that it is a very much approved protocol. Thank you. Any comments? Also, thanks for the response on my questioning about probiotics. Shirley
Shirley,
Yes, I know for a fact that Mayo is using this combination, along with other dose combinations. If it brings the M-spike under control it should have the lowest toxicity compared to higher combinations. I am now down to 15 mg Revlimid (from 25 mg Revlimid) in combination with 20 mg dex. I do suggest to start from the beginning with an acid blocker such as Previcid or Nexium for the day before through two days after the dex. It will save a lot of heartburn (no pun intended).
Terry
I posted a comment yesterday (july 4), but it did not appear today. I do not have a copy and was wondering if it was received.
Mainly I was hoping for a response regarding my Dr. prescribing 10 mg of dex once a week along with 10 mg. of Revlimid. However, by reading previous posts, I see that it is a very much approved protocol. Thank you. Any comments? Also, thanks for the response on my questioning about probiotics. Shirley
Thank you, Terry,for your response to my post. I took Prilosec (OTC) the last time I took dex, and I have some left over, so I'll try that for the beginning. I'm also taking about 6 grams a day of Curcumin and my doctor heartily approves. "It's a miracle pill", he said. Shirley
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