Hello,
I am 44, Male, generally in good health, dxed with stage-I multiple myeloma as per international system (3.2 spike, 40-50% myeloma cell in BM, anemic no other symptoms)
Today we met multiple myeloma specialist at Hopkins and earlier we have been talking to hematologist/oncologist in Reston, VA area.
Earlier we were thinking of going on Revlimid + low dose Dexamethasone for a while see the response and decide to continue with the regime or go for transplant.
Today Dr Borello suggested (he is running a trial on transplant) to think about going for earlier transplant and see if we want to participate in his trial (he was very open and honest about his bias) then we should go Velcade + Dexamethasone route because data shows that people who took Velcade + dexamethasone compared to Revlimid + dexamethasone before transplant had better results after transplant. Also people who went into CR before transplant had better results after transplant.
Other option is continue on Revlimid + dexamethasone until it stop working and then think about transplant? We are so confused that we are almost feeling numb.
Do we have any people on board under 65 years of age and if they can share how did they decide their path.
Regards,
Jay
Forums
-
Jay2010 - Name: Jay
- Who do you know with myeloma?: Forum Friends
- When were you/they diagnosed?: March-2010 (Washington DC)
- Age at diagnosis: 45
Re: transplant or novel drug
Jay-
I was diagnosed with MGUS when I was 60. I had no treatment other than watchful waiting with blood tests monthly and with several injections of Procrit for my anemia. A year later I developed pathological fractures of my left arm and shoulder. At that time my onc at Penn started me with Revlimid 15 mg 21 days on and 7 days off and Dexamethasone 40 mg once a week. I also started monthly Zometa infusions for my bones. I was on that protocol from May '09 until Dec '09. My m-spike dropped to 0.8.
In January '10 I had an autologous transplant. I am now day 83 post transplant and doing well. I went back to work 1/2 time on April 12 and will return to full time this coming Monday. My m-spike is now 0.3. Obviously I haven't achieved a complete remission, but the m-spike has come down and has remained stable so far. My IgG came down from the thousands to the mid-100's.
Both my doctor and I had talked about various treatments when I first met with him. I also did my own research and asked people, like you are doing, what they were doing. My doctor's choice of Revlimid partially was due to the fact that I was working full time and partially because I told him that I preferred oral chemo to infusion, if possible. I finally chose to go the transplant route because I hoped to be able to come off the medications until things went south again. I also went with my gut feeling about the options. I'm not sorry that I chose my route, but am somewhat disappointed with the fact that I didn't achieve complete remission.
Now my doctor is recommending that I do a maintenance dose of Revlimid without the Dex. I am still undecided about that because I am enjoying not being on any meds. But, I'm also concerned about the level of my m-spike. My multiple myeloma progressed quite quickly last year from no signs of problems to a fractured arm.
It is so hard trying to decide what is best for oneself when there really are so many options available and so many opinions about each option. I wish you well in making the decision that will be the best one for you.
Nancy
I was diagnosed with MGUS when I was 60. I had no treatment other than watchful waiting with blood tests monthly and with several injections of Procrit for my anemia. A year later I developed pathological fractures of my left arm and shoulder. At that time my onc at Penn started me with Revlimid 15 mg 21 days on and 7 days off and Dexamethasone 40 mg once a week. I also started monthly Zometa infusions for my bones. I was on that protocol from May '09 until Dec '09. My m-spike dropped to 0.8.
In January '10 I had an autologous transplant. I am now day 83 post transplant and doing well. I went back to work 1/2 time on April 12 and will return to full time this coming Monday. My m-spike is now 0.3. Obviously I haven't achieved a complete remission, but the m-spike has come down and has remained stable so far. My IgG came down from the thousands to the mid-100's.
Both my doctor and I had talked about various treatments when I first met with him. I also did my own research and asked people, like you are doing, what they were doing. My doctor's choice of Revlimid partially was due to the fact that I was working full time and partially because I told him that I preferred oral chemo to infusion, if possible. I finally chose to go the transplant route because I hoped to be able to come off the medications until things went south again. I also went with my gut feeling about the options. I'm not sorry that I chose my route, but am somewhat disappointed with the fact that I didn't achieve complete remission.
Now my doctor is recommending that I do a maintenance dose of Revlimid without the Dex. I am still undecided about that because I am enjoying not being on any meds. But, I'm also concerned about the level of my m-spike. My multiple myeloma progressed quite quickly last year from no signs of problems to a fractured arm.
It is so hard trying to decide what is best for oneself when there really are so many options available and so many opinions about each option. I wish you well in making the decision that will be the best one for you.
Nancy
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: transplant or novel drug
Thanks Nancy, may I ask where did you get your transplant and how long were you in the hospital.
I would greatly appreciate if people on the board can comment why they went with novel drugs over transplant or transplant over novel drugs.
Thanks,
Jay
I would greatly appreciate if people on the board can comment why they went with novel drugs over transplant or transplant over novel drugs.
Thanks,
Jay
-
Jay2010 - Name: Jay
- Who do you know with myeloma?: Forum Friends
- When were you/they diagnosed?: March-2010 (Washington DC)
- Age at diagnosis: 45
Re: transplant or novel drug
jay, i was diagnosed in jan 08,after two clavicle fractures in 6 mos, started treatment right away with Velcade and dex for about 4 months, had stem cell transplant in may 08. everything went very good and was in the hospital 8 days back to work in 12 days alot of fatigue but came along nicely have been doing quite well since have been on zometa once a month for the first year and now every other month,also taking 100 mg of thalidamide daily for about 8 months, dealing with the pn it gets kinda rough but dr says to take abreak when needed and that seems to realy help.
im sorry i dont have the exact levels i am very fortunate to have a dr agent ( loving wife) that keeps me straight on all that,a real life saver. but will get her to give them to you.
i feel like everything is going great and acting as such. hope you do great also if i can help dont hesitate
good luck jay
jay
im sorry i dont have the exact levels i am very fortunate to have a dr agent ( loving wife) that keeps me straight on all that,a real life saver. but will get her to give them to you.
i feel like everything is going great and acting as such. hope you do great also if i can help dont hesitate
good luck jay
jay
-
jpollard - Name: jay pollard
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: jan 08
- Age at diagnosis: 52
Re: transplant or novel drug
Jay,
I received three rounds of Revlimid, Velcade and Decadron before my stem cell transplant. I had a complete response according to a bone marrow aspiration prior to the stem cell transplant. Since my transplant there has been no signs of multiple myeloma in my bone marrow. I am a non-secretor, so I cannot be monitored according m-protein levels.
Given your age, I think novel drugs followed by a transplant might be a good way to go. However, there are cancer centers who would advise you differently. The latest information indicates that Velcade prior to a stem cell transplant leads to a prolonged CR and perhaps overall survival.
Generally speaking, I opt for the more aggresive approach because of my age.
I received three rounds of Revlimid, Velcade and Decadron before my stem cell transplant. I had a complete response according to a bone marrow aspiration prior to the stem cell transplant. Since my transplant there has been no signs of multiple myeloma in my bone marrow. I am a non-secretor, so I cannot be monitored according m-protein levels.
Given your age, I think novel drugs followed by a transplant might be a good way to go. However, there are cancer centers who would advise you differently. The latest information indicates that Velcade prior to a stem cell transplant leads to a prolonged CR and perhaps overall survival.
Generally speaking, I opt for the more aggresive approach because of my age.
-
Matt - Name: Matt Linden
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2009
- Age at diagnosis: 44
Re: transplant or novel drug
Jay-
I had my transplant at the Hospital of the University of PA/Abramson Cancer Center. I was in the hospital 17 days. I had Melphalan infusion on day 1 and transplant on day 3. So, 14 days from day of transplant. I would have been discharged a day earlier, but we had a blizzard on that day. As people have said the transplant is no picnic, but it isn't horrible either. I think the nausea was the hardest thing for me to deal with. The nurses kept checking in with me to see if I needed anything, but I was ok.
Nancy
I had my transplant at the Hospital of the University of PA/Abramson Cancer Center. I was in the hospital 17 days. I had Melphalan infusion on day 1 and transplant on day 3. So, 14 days from day of transplant. I would have been discharged a day earlier, but we had a blizzard on that day. As people have said the transplant is no picnic, but it isn't horrible either. I think the nausea was the hardest thing for me to deal with. The nurses kept checking in with me to see if I needed anything, but I was ok.
Nancy
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: transplant or novel drug
The question of transplant or no transplant may not be answered any time soon. First and foremost, autologous transplant is essentially the use of high dose IV melphalan given, most often, over 30 minutes and for which the patient's stem cells are infused 48hrs after the melphalan is given. Melphalan is a nitrogen mustard that was used in World War I as a poison and, oddly, also happens to be a very good myeloma stabilizing agent.
While there are many genetic subtypes of myeloma that are identifiable through a variety of tests that are only available as research tools (primarily gene expression profiling), myeloma cells are generally most sensitive to
1) lenalidomide (or similar IMiD agents),
2) Velcade (or similar proteasome inhibitors),
3) dexamethasone (or similar steroid agents); and
4) melphalan
The longest survivals -- 60% of primarily low-risk patients can achieve 10 year continuous complete remission -- have been achieved through the combination of all of the drugs above. While this has known single center biases (primarily high socioeconomic class) as this was reported from the Barlogie group in Arkansas, it remains the benchmark to which all other overall survivals are compared.
Our goal, both as myeloma clinicians and researchers, is to reach toward not just killing myeloma cells, but killing myeloma "stem cells". 10-year continuous complete remission is good, but I think our research should focus primarily on the myeloma precursor cells that are resistant to our current therapies.
While there are many genetic subtypes of myeloma that are identifiable through a variety of tests that are only available as research tools (primarily gene expression profiling), myeloma cells are generally most sensitive to
1) lenalidomide (or similar IMiD agents),
2) Velcade (or similar proteasome inhibitors),
3) dexamethasone (or similar steroid agents); and
4) melphalan
The longest survivals -- 60% of primarily low-risk patients can achieve 10 year continuous complete remission -- have been achieved through the combination of all of the drugs above. While this has known single center biases (primarily high socioeconomic class) as this was reported from the Barlogie group in Arkansas, it remains the benchmark to which all other overall survivals are compared.
Our goal, both as myeloma clinicians and researchers, is to reach toward not just killing myeloma cells, but killing myeloma "stem cells". 10-year continuous complete remission is good, but I think our research should focus primarily on the myeloma precursor cells that are resistant to our current therapies.
-
Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: transplant or novel drug
Hi,
I'm right now also at the stage of deciding whether to go for transplant (per my doc advice) or to continue with novel drug therapy.
I'm a 48 years old multiple myeloma's from Israel. 2.5 years ago I was first diagnosed for Plasmacytoma after a fracture in my upper D4 vertebra. After surgery and some radiation I continued with periodic blood testing which revealed, at Dec.09 that I didn’t beat the statistics and I joined the multiple myeloma family.
I'm now on Velcade/DEX regime. So far I feel lucky with hardly no side-effects (maybe a bit sleepless at night). I'm doing sport almost every day (road cycling) and work as usual (out of the treatment visit to the hospital) so that may contribute.
My Igg seems to go down nicely after first two cycles so my doctor starts to talk with me "what next"? She is in favor of going through transplant as it seems right now as the consensus. Since the transplant will probably drop me down for few months from the (almost) regular life I'm having, I also just don’t know what to decide. So far , the Time-To-Progression statistics between patients under novel drugs with or without transplant do not show any clear differentiation and time perspective is missing here due to the relatively short time of using novel drugs.
So my dilemma – If the current drug treatment puts you into CR or at least VGPR, why not wait, gain more time and go for transplant once the figures change their direction again? My personal feeling is that we are fighting here with time.
So why not try to gain as much time as possible before doing the next move.
Here is a link to an interesting article about that matter.
I will sure keep on watching this forum and this thread specifically.
Yours,
Shay
I'm right now also at the stage of deciding whether to go for transplant (per my doc advice) or to continue with novel drug therapy.
I'm a 48 years old multiple myeloma's from Israel. 2.5 years ago I was first diagnosed for Plasmacytoma after a fracture in my upper D4 vertebra. After surgery and some radiation I continued with periodic blood testing which revealed, at Dec.09 that I didn’t beat the statistics and I joined the multiple myeloma family.
I'm now on Velcade/DEX regime. So far I feel lucky with hardly no side-effects (maybe a bit sleepless at night). I'm doing sport almost every day (road cycling) and work as usual (out of the treatment visit to the hospital) so that may contribute.
My Igg seems to go down nicely after first two cycles so my doctor starts to talk with me "what next"? She is in favor of going through transplant as it seems right now as the consensus. Since the transplant will probably drop me down for few months from the (almost) regular life I'm having, I also just don’t know what to decide. So far , the Time-To-Progression statistics between patients under novel drugs with or without transplant do not show any clear differentiation and time perspective is missing here due to the relatively short time of using novel drugs.
So my dilemma – If the current drug treatment puts you into CR or at least VGPR, why not wait, gain more time and go for transplant once the figures change their direction again? My personal feeling is that we are fighting here with time.
So why not try to gain as much time as possible before doing the next move.
Here is a link to an interesting article about that matter.
I will sure keep on watching this forum and this thread specifically.
Yours,
Shay
Re: transplant or novel drug
This is a common retort to the transplanters -- if I am in a CR now with induction therapy, what's the point of a transplant? Certainly it's not to improve response rate since nearly all myeloma patients can achieve a response, many can achieve complete response within 2-6 months of diagnosis. Patients with high risk and low risk disease all have about the same response initially.
Two key pictures:
They come from unpublished data regarding a large phase III trial that looked at the use of Revlimid with high or low dose dexamethasone (ECOG E4A03). While the trial's primary endpoint was met at 4 months, the trial participants have been closely followed, especially looking at patients that have gone on to transplant.
So after a median f/u of 36 months, the patients that continued Revlimid and dexamethasone had an overall survival of 79%. And the patients that had 4 months of Rev/dex and then moved on to autologous transplant had a 3-yr overall survival of 92%. Now remember that this is with the median survival of 3 years so it's not like many of these patients even had a chance for a "delayed" transplant.
A large international trial is supposed to start comparing Vel/Rev/Dex for 6 months vs. Vel/Rev/Dex for 3 months followed by autologous transplant. Stay tuned.
Two key pictures:
- RD.jpg (72.69 KiB) Viewed 1545 times
- RD+Transplantation.jpg (66.29 KiB) Viewed 1545 times
They come from unpublished data regarding a large phase III trial that looked at the use of Revlimid with high or low dose dexamethasone (ECOG E4A03). While the trial's primary endpoint was met at 4 months, the trial participants have been closely followed, especially looking at patients that have gone on to transplant.
So after a median f/u of 36 months, the patients that continued Revlimid and dexamethasone had an overall survival of 79%. And the patients that had 4 months of Rev/dex and then moved on to autologous transplant had a 3-yr overall survival of 92%. Now remember that this is with the median survival of 3 years so it's not like many of these patients even had a chance for a "delayed" transplant.
A large international trial is supposed to start comparing Vel/Rev/Dex for 6 months vs. Vel/Rev/Dex for 3 months followed by autologous transplant. Stay tuned.
-
Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: transplant or novel drug
Another option could be
Take induction (RVD or CVD or what ever your center suggests), if that puts you in CR or near CR, mobilize and freeze the stem cells. Continue on the maintenance drug (rev or thalidomide). When you relapse, then use the stem cells and get the transplant.
I think the above approach is more recommended by Dana Farber then anyone else, as we have seen in other data and presentations. Early transplant vs late transplant does not change OS.
So, in my humble opinion, we do have a choice based on what else is going on in our lives to either jump into the transplant right away or get the delayed transplant.
One incentive of early transplant used to be that we didn't have to take any chemo drug after that. However, now everyone is recommending maintenance chemo drug after the transplant, so that incentive is gone as well.
Any ideas..?
Confused Jay
Take induction (RVD or CVD or what ever your center suggests), if that puts you in CR or near CR, mobilize and freeze the stem cells. Continue on the maintenance drug (rev or thalidomide). When you relapse, then use the stem cells and get the transplant.
I think the above approach is more recommended by Dana Farber then anyone else, as we have seen in other data and presentations. Early transplant vs late transplant does not change OS.
So, in my humble opinion, we do have a choice based on what else is going on in our lives to either jump into the transplant right away or get the delayed transplant.
One incentive of early transplant used to be that we didn't have to take any chemo drug after that. However, now everyone is recommending maintenance chemo drug after the transplant, so that incentive is gone as well.
Any ideas..?
Confused Jay
-
Jay2010 - Name: Jay
- Who do you know with myeloma?: Forum Friends
- When were you/they diagnosed?: March-2010 (Washington DC)
- Age at diagnosis: 45
16 posts
• Page 1 of 2 • 1, 2