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lois b Member
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I'm just beginning this journey, and I spend a lot of time exploring on line, trying to figure out all the possibilities. In the six weeks since I began dex/velcade/thalomid, I have made very good progress, and my doctor is extremely pleased. So I'm wondering, is it possible to put MM into remission for any length of time WITHOUT a transplant? or am I just dreaming? I'm young (53) and in good health, and the treatment so far has been very easy for me -- very few side effects. While I have no objection to the transplant option, I'd be interested in knowing whether it's possible to hold the disease at bay with a simpler plan. Or am I just dreaming? thanks Lois |
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Jo Member
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Hi Lois... I'm a 10yr. survivor without a transplant! I'm 51 and am in NO rush for one. I hope and pray that with all the new drugs that are on the horizon, transplants will become obsolete. I must say that even transplants have come a LONG way since I was DX. I've had some stem cells harvested and stored but my doctor hasn't even suggested a transplant. Some doctors think it is the ONLY sure thing and others feel it is better to find a drug that works and stick to it! 2 old sayings come to my mind ...If it ain't broke don't fix it...and....Less is more. Good luck and feel free to contact me any time. Jo' |
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DougC Member
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First, I'd like to commend you for doing research and putting yourself in a position to make an educated decision and be involved in your care planning. I also have spent a great deal of time researching different treatment protocols. The new novel drugs do have promise…especially when used in combination with other drugs and transplant. However, I've yet to find any long-term data that can support the claim that novel drugs can produce long-term remission rates equal to transplant. To take it a step further, the University of Arkansas treats…and has treated…more myeloma patients than anywhere else in the USA, if not the world. Their results are well published and supported by long-term data and hard evidence. Sure it's possible to achieve long-term remission with novel drugs. Is it likely? It's wonderful to hear of survivors who have used novel drugs or alternative treatments. But, I always wonder, how many didn't make it? Ask your doctor how many of his patients have made it long-term with and without transplant. Many people misunderstand or are confused about how myeloma actually reacts to under treatment versus more aggressive treatment. Do some reading about what many believe leads to relapse. I also heard…I haven't personally read the study… a new study has come out that supports the argument that Revlimid used for an extended time prior to transplant reduces the body's ability to engraph stem cells. That means the idea that a patient can always defer a transplant until the drugs stop working might be faulty. Best thing you can do is consult a myeloma specialist and go from there. Personally, I think whatever decision you make, make sure you have no regrets. Best of luck |
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Jo Member
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Hi Doug.. You are so right...do your research! My Dr. who is Dr. Jagannath came to NY from U of Arkansas. He has the attitude that Transplants are not always the way to go. I had 1 yr of Chemo and could only collect enough stem cells for 1 transplant. They like to get at least enough for 3, so I guess you take that chance with any drug treatment and maybe my LOCAL Oncologist ( I live outside of NYC) should of thought about collection before chemo.Who knows at this point, but If you look at the survival rate of people with transplants as opposed to the survival rate of people with only drug treatment I think it would be close now that we have Velcade and Revlimid. And I think you would also find many who had the transplant and only got a few months of Remission and then still had to start a drug treatment. Like I said alot has changed since I was DX 10yrs ago, but I have only had 1 doctor ask me why I haven't had the transplant and he was pretty young, with most of his training at a transplant hospital. This disease is so personal, what works for one may not work for the other..A drug that doesn't seem to work at 20 mg. may work at 25mg. OR may work with just 2 mg. of Dex. added. I guess we all just have to find our "cocktail". I've been blessed to be able to "ride" the wave of Revlimid for 5yrs now after being in a Trial for the drug for a little less than 4. I was also Blessed to have a GP who "caught" the red flag of a high IgG count during a routine exam. It is so nice to have a place like this to "talk" compare..and understand one another. Peace to all...................... Jo' |
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DougC Member
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You're so right Jo, not everyone needs or should get a transplant. I hope someday there's no need for transplant or high dose chemo. Your story is very encouraging for all of us. Continuted good health to you Doug |
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Jo Member
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Thanks Doug...and the same to you, I try my best to be a positive "vibe" to people. Everyone who reads this should know that I have my bad days like everyone else,filled with pain,side effects, etc. But I'm here to enjoy life and my beautiful 2yr old grandson!. I lay low with all of the "technical" research because right now what I'm doing works. I found that when I read, and research and dwell on the disease I am the disease, and that is the one thing we all have to avoid..We need to be ourselves, live while we can, I'm not saying not to be informed,what I am saying is try for one day not to think of yourself as a "patient", try not to think about each pain and ache as MAYBE it's the MM. It's a hard thing to do but I have found the more you do it ..The more you CAN do it and it is great for your sanity!This is a VERY serious disease but then again LIFE is a VERY serious condition also. You have to find that "happy" medium of survival!  Great PEACE to all and here's to SPRING!! It's been a long cold winter....... Jo' |
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Chat Moderator Administrator 
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Hi Lois, This is a good question. It is certainly possible to achieve remission without a transplant, and it is good to hear that you are doing well. The important question would seem to be, though, how long this remission will last versus how long remission would last with a transplant. I can explain the approach we take toward myeloma treatment at Huntsman Cancer Institute. (As a side note, our doctors, Dr. Tricot and Dr. Zangari, also came from the U of Arkansas. They started the Myeloma Program at HCI in 2007.) Based on experience and research, we know that multiple myeloma is an aggressive cancer and, therefore, it must be treated aggressively from the start. One concern is that if you are taking these drugs in lower dosages and without a transplant, your body could build up a tolerance for them and they could actually be less effective if, down the road, you need to take them in higher dosages with a transplant in order to achieve remission. It’s similar to how people shouldn’t take antibiotics too often because there is a concern that one day, when you really need them, your body will have built up resistance and they won’t be as effective. Therefore, at Huntsman Cancer Institute, we take an aggressive approach right away and don’t encourage patients to experiment too much with less aggressive methods of treatment. If a patient is a candidate for the procedure, we highly favor treating them with tandem (two) autologous stem cell transplants when they are newly diagnosed. The newest study on tandem transplants, which began in 2004, shows that half of all newly diagnosed multiple myeloma patients are likely to survive more than 10 years after the start of treatment. This is good news when compared to the median survival rate of patients who receive treatment with conventional chemotherapy (or with newer drugs such as thalidomide, revlimid, or velcade in combination with conventional chemotherapy), which provides a median survival of three to four years, with only five percent of patients living 10 years or more. There is simply no other treatment study out there that proves to have the same or better results as tandem transplants and that is why we are such strong advocates. As a patient, I can imagine that tandem transplants may seem overwhelming, but research shows how effective they are at achieving remission for a long period of time and ultimately giving myeloma patients the best overall quality of life possible. In addition to two autologous stem cell transplants, we typically give one year of maintenance therapy to fight any myeloma cells still lingering in the body. Myeloma cells are not easily destroyed and some will survive, even after chemotherapy. Chemotherapy only targets myeloma cells that are actively dividing and not the ones that are “sleeping,” or out-of-cycle. Maintenance therapy involves taking a combination of certain drugs on a timetable to keep myeloma from coming back. We have seen that giving a combination of drugs such as velcade, thalidomide, and dexamethasone during maintenance therapy yields better results than giving only one of these drugs, and that giving these drugs after transplants is more effective than giving the drugs before transplants. Please let me know if you have any questions about the research that has been done on tandem transplants. I hope this explanation helps and that it gives you some insight into this approach to the treatment of multiple myeloma. All the best, Myeloma Chat Moderator at Huntsman Cancer Institute |
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Annick Member
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I just wanted to comment on Jo's reply re: Revlimid and Dexamethasone and overall survival. Unfortunately, when drug companies run clinical trials, the follow-up tends to be a year to 1.5 years maximum, so there's no way for anyone to know what the long-term overall survival (i.e. 5+ years) is with the various new drug combinations. That data just doesn't exist, and that's a disservice to patients and physicians alike. It's wonderful to hear, though, that Revlimid has been able to sustain your disease for that long! I wish you all the best. |
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