Pat’s Place: Risk Versus Reward When Considering A Stem Cell Transplant
In last month’s column, I wrote about how much my perspective on myeloma therapy has changed over the past six years since my diagnosis. In a nutshell, I’m more willing to try new things and endure troubling side effects now than I was back when I was still a “rookie.”
My attitude about stem cell transplants is a perfect example of this. I look at stem cell transplants differently now – both allogeneic transplants (using donor stem cells) and autologous transplants (using my own stem cells). Not only would I be willing to undergo a second or even third autologous transplant if my doctors felt it was worth a try, I would even consider a donor transplant somewhere down the line.
Considering I started out doing anything I possibly could to avoid transplants of any kind, that’s quite a ch-ch-change. All of which raises the question, “Why?”
After all, I was deathly afraid of stem cell transplants when I was first diagnosed back in the spring of 2007. Mayo Clinic had just started allowing patients to harvest their stem cells and wait to transplant. I lobbied hard and eventually wore my doctor down. My cells were harvested after four months of initial Revlimid (lenalidomide) plus dexamethasone (Decadron) treatment. Ten months later, I achieved a complete response that lasted three years.
Like so many patients, my first relapse was tough to take. And after my first autologous stem cell transplant two years ago didn’t work – and actually made my myeloma worse – I understandably panicked.
Attending the American Society of Hematology meeting and listening to myeloma specialists quote statistics about how relapsed/refractory patients often live less than one year after Revlimid and Velcade stop working for them didn’t help. That wasn’t an easy thing to hear!
I was instantly transported from the ‘Myeloma therapy is inconvenient’ group to the ‘I’m scared out of my mind and I’m willing to do anything to live!’ club.
Stem cell transplants are never any fun, even under the best of circumstances. But when compared to dying, I’m more than willing to do it again if a transplant can buy me precious time.
A little over one year ago, two of my good friends, fellow Beacon columnist Arnie Goodman and 20-year myeloma survivor Jim Bond both began preparing for donor transplants; Arnie’s was a desperate, last-ditch effort to stay alive, and Jim’s was to hopefully nip a developing case of myelodysplastic syndrome (MDS) in the bud.
I understand how risky undergoing a donor stem cell transplant can be. And often they don’t work well.
Even though Arnie’s doctors weren’t enthusiastic about using a transplant to treat such advanced myeloma, he tried it and is still alive today, one year later.
Jim is doing very well, too. As a matter of fact, his donor transplant seems to have helped knock his myeloma back along with his MDS.
I want to pause here and caution my readers not to get too excited about all of this. Arnie is the most determined patient I’ve ever met, and Jim is as tough as they come. But I think I’ve become pretty tough over the years, too. And my body isn’t as beat-up as Arnie’s or Jim’s were when they decided to “go for it,” emerging alive and (relatively) well on the other side.
It takes determination and more than a bit of luck to survive and thrive following a donor stem cell transplant. I’m not sure I’m ready to take that risk yet. But once a few more therapies fail for me, I say bring-on the chemo or whatever it takes to knock down my myeloma enough to try either an autologous transplant, donor transplant, or both.
I’ve got so much to live for, so much to do before I check-out. I understand how important quality of life is for so many of my fellow myeloma patients. But I may be nearing the point where I need to “toughen up” and let my doctors have their way with me!
Now before you start commenting furiously about how I shouldn’t have to contemplate therapy solutions as drastic as another autologous and/or donor stem cell transplant, I realize that with any luck at all, the tried-and-true combo of Velcade (bortezomib) plus dexamethasone should continue working for me for months – and hopefully years – into the future. At that point, Kyprolis (carfilzomib) and/or Pomalyst (pomalidomide) may work for me, too.
Don’t think for one minute that I don’t appreciate every waking hour I’m “only” being treated with Velcade and dexamethasone; most of the looming alternatives are a heck of a lot worse.
And I also understand that some patients chose not to aggressively treat their multiple myeloma. For them, quality of life trumps a few more months – or even years – of being over medicated and feeling lousy.
I get it! I’m not trying to be a “Debbie Downer” here; I’m simply being realistic.
Myeloma can morph and change on a dime. Seemingly overnight a mild and easy-to-treat case can become unrelenting and virulent; I’ve just witnessed it happen to an old friend back in Minnesota.
Remember my battle cry? Become an educated patient! Here’s wishing all of us a soft landing. May we never have to face any of these tough decisions! But difficult or not, understanding your options – and based on what I‘ve written here today, I‘m tempted to add, “and toughening-up” – could add precious months or even years to your life. For me, I’m willing to feel a bit uncomfortable in order to gain that extra time.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Pat: I think your "toughening up" policy is mostly age related. That is why oncologists want to work with youngsters like yourself. You commented on your dad at 91 was unable to function normally and had little more to accomplish. He did not need to be toughed up...he needed QOL and could not get it. How about us in our 70's? Still lots to accomplish but "toughening up" may not be possible nor a acceptable tradeoff with QOL issues. If we could get the treatment issue straightened out (personalized agents with individualized dosing) perhaps we could eliminate "toughening up" for everyone. Our research shows that this is possible at least reduced to "toughening lite" and that's what keeps me going.
Hi Pat, You certainly are a very educated patient and have dedicated yourself to teaching others too! I for one am grateful for that.
I certainly never would have guessed that I would go through the amount of chemotherapy plus auto stem cell transplant that I did do, say five years ago. It did help me immensely though, saved my life for sure! So I just accepted the treatments, although of course they weren't easy to get through.
A friend of mine had gone through a similar set of treatments including transplant about a year and a half ahead of me, so I at least had some familiarity with this. My friend and I were both surprised though to realize that we had the same quite rare cancer.
You are a brave person to contemplate future treatments, and I hope you don't actually need to have more transplants!
Hey Pat, I an always happy to hear that you are still doing okay. I had a ASCT, 1 and 1/2 years ago and it was the most terrible thing I have ever done. After a year and one half, I still have not recovered and am about one third the man I used to be. However, there were others there at the transplant center that had hardly any ill effects (at least that's what they told me). Like you, I am willing to try anything, as long as it doesn't affect my QOL any worse. The decisions we make on this issue are personal, difficult and terrifying, but the alternative is even worse. I have been blessed to be in remission since the transplant and I dread the day when the eventual relapse will occur. When I think about that day and even when I have bad days, I remind myself that their are a lot of people worse off than me and I have lived my life for 62 years. Many have not. Thank you for your thought inspiring articles. I always love reading them.
Thanks for your perspective Pat.
I'm 47 and was diagnosed 2 years ago with "Oligo-Secretory Plasmacytomas," a rare variant form of MM - I secret only a small amount of M Protein and my labs and tests (biopsies, etc.) otherwise look normal. I've had 7 plasmacytomas radiated (150 gy total) and gone through 8 cycles of RVD (reached CR after 2) and had stem cells collected last November. Lots of drama/ lots of treatment. It took a while to get to the Multiple Myeloma diagnosis and then on to the chemo. I'm doing well and stable, on bi-weekly Velcade Sub Q and bi-monthly Zometa - labs are good. Now..........when to get the ASCT? Big question. Wait til the M Protein ticks up from nothing to a .2? Wait for another plasmacytoma? Some Docs are good with waiting, some say go get the transplant. Like you (were), I'm in no rush. I have 2 boys, full-time work and full life. I understand the potential for 10-12 extra months in the end, but doesn't appear the evidence is clear in that overall gain...........???
I haven't had SCT yet and don't plan on getting one soon! I'm about to hit VGPR on RVD. Been on treatment for a year and got diagnosed at age 19 and now am almost 27.... I have no problem getting one just no need to do it now and use up one of my supposed biggest bullets in the case! I am an example of someone who did not need a SCT right away and lived almost 7 years without any treatment other then initial tumor removal and reconstruction. Of my ribcage! I just hope I'm not doing any permanent harm to my body with RVD but is rather be ahead of the curve then behind it and were now in a place that you don't need to go SCT right away and if you want to hear about my story please let me kno but I am doing perfectly awesome in my life and feel grateful to have alot of options to help manage this chronic ill ness so I can live a long promising life! Although I am on RVD it does not come with out side effects so nueropathy is definitely an issue but riding bicycle helps managa and only getting it once a week has brought it down alot after a 4 month break! We're all trying to bake a pie and the way we bake aren't always the same but we all always wants the same outcome which I am certain I can achieve with how I've been managed!
Mark
Great article Pat. It is interesting how may different perspectives there are on this question based on individual preferences, age and life situations. I personally am right beside you on this one. There is still lots to live for. For me it is not a matter of toughness but really just a issue of adjusting expectations and doing what needs to be done. Here's hoping that Velcade/dex works for a long time, or that the newer agents will and that you don't have to make those choices.
Our daughter was diagnosed at 32. She was in really bad shape & it affected her bones alot.After 4 months of Vel/Dex she was in complete remission. She then collected her stem cell & had a auto transplant last august. All this within 12 months. They recommended she have the transplant because she was young. She is now in complete remission. It was a scary decision but she wanted to hit it with all she could. Hopefully it will last. As a patient it is hard to know what the right thing to do is because there are options. That is when you have to trust the doctors to help with the decision.
Fascinating read, Pat.
It is interesting what being educated does for/to a person, isn't it? I was diagnosed January, 2011, after laying in bed for 4 months with a misdiagnosed broken back... and my response to my doctors was initially "U-huh, sure" all the way down the line. Radiation? U-huh. Thalidomide? U-huh. Oh, Velcade/Dex instead? U-huh. Stem-cell transplant? U-huh. I read up on everything that was going on, and tried to stay current, but as to actually making suggestions and guiding my treatment... uh, no.
Now? That I know what's what a whole lot better than I did then? I'll probably be a total PITA to my poor onc next go-round? "You want to give me THAT much dex? I don't think so!" "A stem-cell, again? Wanna bet?"
And yet, here I am, closing in on two years post ASCT, with nothing much wrong with me. Yes, the transplant process significantly damaged my heart, and yes, I am disabled now... but on a day-to-day level I am just suffering 'irritants." Life is currently actually very good for me.
it is tough to think about what is coming. It is tough to know what I know, to be as aware as I am about what may be (well, is) waiting for me in the near or intermediate (not distant, that's for sure) future... lots of pain, suffering, sickness, and distress (and a lot of that getting shared with my loved ones.) That's tough to deal with, even now, and it is always in the background, isn't it, for those of us between rounds?
The fact is, for me, it will very likely be 'uh-huh' again next go-round... my doctor scored big-time for me last time out, and I am willing to give him the benefit of the doubt going forward... and that, given the choices out there, might be a cop-out, but it's also my reality.
Glad you're still making us think, Pat. Keep up the good work. And stay strong!
Like Arnie wrote, " It is interesting how may different perspectives there are on this question based on individual preferences, age and life situations..." Thanks for sharing, everyone! I would like to add a couple of things. First, in no shape or form have I become a fan of SCTs! But we do what we need to do, right? That was my point. Call me a "reluctant participant." And two, I thought I could sneak-in the "toughening-up" point. But Gary called me on it right away! I agree with you, Gary. Different priorities for different patients at different ages. The goal should be achieving both; better quality of life and better outcomes.
The simple truth is that an ASCT is a non-specific, toxic sledgehammer, with its therapeutic roots originating decades ago when most MM patients did not even come close to a CR or even a VPGR. Given these therapeutic limitations, an ASCT was a completely reasonable way -balancing risks and benefits - achieve a deeper response. Let's never forget this historical context. Or that novel drugs can often achieve the same outcome today. It made me think about ASCTs differently.
For some other blood disorders, an ASCT is more likely than not To be CURATIVE - and is rightly touted as so. But in NO way is this the case for MM - a view that is not inconsistent with even the total therapy approach offered from Barlogie - most noble and gutsy by the way - the latest data of which indicates that a substantial fraction of low-risk patients with two ASCTs will continue to relapse even ten years of beyond. Sad but true. But some are cured.
This is why the procedure frightens me - not because I am a wuss about toxic procedeures, but because it is oversold, as if it is some high tech proedure to be endured and yes - naively cited as a new birthday.
That said, I also recognize that for some patients, an ASCT - or more likely, a double ASCT - does likely ensure a long and drug-free remission - more then ten years, and accordingly should rightly be touted as a new birthday.
BUT WHICH PATIENTS? THIS IS WHAT WE ALL NEED TO KNOW? Maybe we will learn this from a breakdown of results from the current big clinical study comparing outcomes following ASCTs versus novel drugs. If one day - and it may be less than a year or two from now - an oncologist can tell me than an ASCT, in view of my genetic and physiological profile, has say a 50% chance of ensuring a ten year remission without drugs, then damm right I will do it. I will also do it, because Ken Anderson, Brian Durie, and Ola Landgren believe a cure is right aound the corner - and in my own opinion they are most objective thought leaders in the field - and that type of extended remission will put me on the curative path.
But so long as I am healthy as ever without an ASCT, I will not be a guinea pig simply accepting and ASCT - and waiving all liability in an Informed Consent agreement
This is also why the procedure also somewhat pisses me off, because uninformed and (perhaps even disingenuous) doctors recommend it like antibiotic - this is NOT the case with the outstanding physician consultants on this site though; they all know the full monte. And call me a bigger cynic, but for these uninformed physicians, I think they also know that an ASCT is flashy, profit-generating, and quite interesting.
But for now - when I still have options and and healty - I would still feel more like a guinea pig if I submit to an ASCT.
And with the advance of personalized genetics and likely approval over the next few years of two antibodies (including - dare I say - the potential gamestopper, daratumumab), a therapeutic vaccine, and inhibitors directed to a different target, HDACs - we may really have the last elusive agent to nail the coffin on this disease for most MM patients.
Just my opinion - and my hope - so please don't get too huffy. To quote the words Kevin uses when he signs off: live for a cure.
Hi Pat,
Best of wishes on whatever decisions you make it the future, and I hope that the VD regimen continues to be effective for you for all the years to come, should you need it.
NuffSaid,
I don't want to argue as to the merits of stem cell transplants in the context of MM, but I do want to comment on one thing. Some very informed and very genuine myeloma doctors DO believe in SCTs, and they don't all dole them out like candy, knowing how much of a toll it can take on their patients.
We also mustn't forget that while the new drugs can be amazing and life-saving, most, if not all of them, are also non-specific to a large extent. We also have to keep in mind that they many times wreak devastating side effects. I watched as my mom struggled with the side effects, until she could take no more. (How could she when she felt deathly ill and unable to eat for 4 out of the 7 days of the week, even at the lowest doses?) In contrast, while my mom had some awful days with her ASCT, the procedure and the recovery was very much tolerable for her. In the end, I just wanted to say that while you may very well disagree with SCTs, please remember that there are (informed) others who still very much believe in this, and the doctors who believe in them are not simply callous money-mongers.
Alex: I don’t want to argue as to the merits of stem cell transplants in the context of MM, but I do want to comment on one thing. Some very informed and very genuine myeloma doctors DO believe in SCTs, and they don’t all dole them out like candy, knowing how much of a toll it can take on their patients.
There is no disagreement; I said the same with respect to informed myeloma doctors, including those on this site.
Alex: We also mustn’t forget that while the new drugs can be amazing and life-saving, most, if not all of them, are also non-specific to a large extent. We also have to keep in mind that they many times wreak devastating side effects. I watched as my mom struggled with the side effects, until she could take no more. (How could she when she felt deathly ill and unable to eat for 4 out of the 7 days of the week, even at the lowest doses?) In contrast, while my mom had some awful days with her ASCT, the procedure and the recovery was very much tolerable for her. In the end, I just wanted to say that while you may very well disagree with SCTs, please remember that there are (informed) others who still very much believe in this, and the doctors who believe in them are not simply callous money-mongers.
Good point - and I am sorry about your mom. But I think we also largely are in agreement. I am aware that the drugs can have adverse effects in some patients - but I also know that for many patients, like me, there are minimal effects (although I am not on Velcade or Carfilzomib, which I think are the nastiest culprits). ASCT are always nasty with long term side effects that can include secondary cancers. I also don't know your mom's age, general health upon diagnosis, and (obviously) which chemo treatements see receieved- which need to be appropriately balanced. With proper testing and profiling, maybe it would have been clear that for your mom, an ASCT was the best option. This is why I mentioned the need to know which patients should be given which treatment.
I also said that I would consider an ASCT if such profiling and testing would indicate that I would have a greater than 50:50 chance of a long, long, term remission.
Pat,
As always your columns are very insightful.
"I was instantly transported from the ‘Myeloma therapy is inconvenient’ group to the ‘I’m scared out of my mind and I’m willing to do anything to live!’ club"
I am still in the "Myeloma therapy is inconvenient" group and hope to stay there. However, if I am transported to the later group, I can assure you that I will pursue any and all options.
I have avoided ASCT for over 4 years now and hope to continue to avoid that option. It is a sledgehammer non-specific treatment. But I will not rule out anything when and if it comes down to life vs death.
Ron
Hi Pat
Good article, and perspective.
I am looking forward to the day when clean, autologous, hematopoeitic stem cells can be created from non-myelogenous tissues. There is a good deal of promising research in this area, and hopefully a working process will become available soon.
In the meantime, I am feeling extremely fortunate, and grateful, for the time that lenalidomide has granted me.
Frank
Ref Gary's note. I agree with Gary that when you are in your 70's and have other health issues QOL might take priority over "toughening up".
I am 72 and was diagnosed with high risk smoldering multiple myeloma and have resisted early treatment with RD and so far I have been lucky enough not to progress.
Bob
I just think of myself as living for a cure. For a good part of the last 5 years since my diagnosis I did not think I had much of a chance, even though I had some very good results with Velcade, which quickly put me into a CR that lasted just under two years, and then an ASCT that was honestly not that bad for me and also put me in CR for almost another two years. That ended in March 2012, and since then I have been depending on Velcade/Dex. I achieved CR last November, went on bi-weekly maintenance. Just a month ago my numbers looked a little iffy, and my onc bumped it up from biweekly to 3/4 weeks. Hard to call it maintenance anymore. I feel like I am approaching one of the things I have really dreaded - the day Velcade stops working for me. On the other hand, I have another batch of stem cells on ice in Houston, and a lot of hope for the new drugs. I have a great job with great benefits and a heroic wife. Aside from some bone issues (two broken ribs and a hip joint problem) and the relatively mild chemo side effects, I am actually feeling pretty good these days - probably the best since (or maybe even before!) diagnosis. I am not as MM-educated as some, but I don't have my head in the sand either. My wife and I have a fair amount of skeptical trust in my once and a high tolerance for risk and side-effects. Right now I would say that if they told me I should do another SCT I would roll up my sleeve and tell them to bring on the Melphelan. I expect we will do something with Carfilzomib first, though. One more comment - a friend of ours was diagnosed a little before I was, and she went the way of back to back SCT's with a whole lotta Velcade and Dex along the way. A pretty tough road, but I am thinking that she is Cured or close to it. I look at her from time to time and go "hmmmm, wonder If that would have been a better move?"
I think debating the value of stem cell transplantation is missing the point. To me, an SCT is one of the major therapies that are available, along with Revlimid and Velcade. Those are the "big three." Now with Kyprolis and Pomalyst, we have another option. Since refractory patients are likely to be resistant to one or both of these new drugs, let's combine the two and stipulate that there are now four major therapy options. Rule-out SCT and you are taking one of those four possible options off the table. Harvest and delay is fine. But to arbitrarily rule-out one of the "big four?" What if Revlimid gives you an unbearable rash. Or Velcade severe peripheral neuropathy (PN). Now you are down to three or maybe just two. See where I'm going with this. I agree with Frank. Hopefully researchers can improve SCTs to make them a stronger member of the "big 3/4."
Pat has hit it on the head: ASTC is an important option in addition to the for main approved novel agents. Individualized therapy based on risk analysis, including the recent addition of genomic profiling, and the application of monoclonal antibodies and other investigational therapies will soon widen our options significantly. For some, an allo transplant or a modification of it may be indicated. Although we can rule out certain options for ourselves, it is unwise to advocate for others to do the same without having all the facts. Best wishes to you, Pat, and I send my condolences after the passing of your dad. Keep up the good work, and keep smiling:). Jan
Thank you, Doctor! Appreciate the support and kind words...
Hi Pat,
Another great article. I don't think I was ever a member of the ‘Myeloma therapy is inconvenient’ club, I think I bypassed that one and joined the ‘I’m scared out of my mind and I’m willing to do anything to live!’ club. This was especially when all the treatments seemed to fail.
The QOL for me also takes into account the QOL for my husband and children. Would I be willing to "toughen up" and accept for example more PN if I knew I was going to be around for longer. Of course I would if it was just PN. Before I had my allo the specialists told us they were thinking of giving me another transplant. But they didn't tell us the protocol. We, erroneously, thought it would be the same as the auto. I reacted badly to the melphalan, and was on the critical list for a while. So my husband and I were in the awful position of discussing what length of time we would want the doctors to guarantee I would get before we had the treatment. We decided two years, they would need to guarantee me two more years of life for me to undergo an auto again - with melphalan (The last one gave me two months). Thankfully they used a different protocol for the allo. I have also passed the two years :).
Keep well,
Libby
So many decisions to be made, right Libby? Of course often we have little control and need to put a pedal to the metal! Glad yo are doing so well!
Good article and a critical topic in our world of myeloma. I had tandem stem cell transplants (autologous) in 2005 at the Cleveland Clinic, 90 days apart, as part of the protocol I was in. I did not get long-term total remission, but I did get very long-term fairly complete remission (7+ years worth). Would I get another SCT if proposed by my oncologist? Possible, but not until I (a) got a second opinion (from Cleveland Clinic, in all likelihood) and (b) got some counseling before undergoing it. Having the second transplant so soon after the first was a very sobering experience; I knew I would likely sail through physically (which I did) but I struggled emotionally both during my inpatient time and for several months afterwards.
Wow! You "sailed through?" I think I was nauseous for five weeks straight! And that was just one. April, you bring up a great point about the psych aspect of it all. My guess is you wouldn't get a tandem this time? If a single would give you a couple drug free years, would you?
I was diagnosed in the very early stages of myeloma, so when I had my STC, I was in pretty decent shape (other than that cancer inconvenience). No nausea, no mouth sores, nothing. I was discharged both times in less than 3 weeks. The only difficulty I had during either transplant was during my second transplant: I agreed to participate in a clinical blind study--some new drug to combat mouth sores. I got the full dose and reacted badly to it for three days. (Ironically, they stopped the study 10 days later, having gathered enough data to determine further testing was futile.)
The psychological aspect was daunting. I would not do a tandem again. (I think most researchers have agreed that tandems do nothing to improve the outcomes--the whole point of the clinical trial). A single? Man, Pat, that's a hard one. I'd have to think long and hard!
Hi Pat,
Thank you for a wonderful, thoughtful, "laying it on the line" article. I have had a stem cell transplant with good results...remission for 3 years...however my kappa light chains are now slowly rising. I have an option for a 2nd transplant, at some point, but am wondering at my age if that is wise (70). How much time do I gain vs having the other chemo options.
Any thoughts on this would be appreciated.
Brenda
Sorry I missed responding to your comment from a while back, April. Actually, tandems are making a comeback. Yuck! Stats are one thing but how this stuff makes us feel--both physically and emotionally--are another. None of this is easy, that's for sure.
And Brenda, the rule-of-thumb on this is the second transplant may only work for one half as long as the first. So, would you think a year and a half is worth going through it all again?
I gotta say that i could never do a second transplant. I didn't do well with the first one at all. I was nauseous for 3 months and literally could not eat or drink much of anything. I was so bad I became malnourished and dehydrated. I was re-admitted back to the hospital 3 times after initial release of 3 weeks. My body did not play well with Melphalan.
On the bright side, I have reached a CR and am doing well. The thought of doing it again makes me cringe. EEEEK!!!
Look at the bright side, Scott. I was nauseous nearly that long and mine didn't work! I understand it would be difficult, but we do what we have to do if we start running out of options, right? I would do it again, but I hear you--not fun.
Hello Pat,
It has been over a year since I've written to you, and am very happy to see you are still active and have a positive approach on your view of SCT's.
I sailed through my tandem back in 2009, I was 55 at the time. The worse part was the boredom sitting in isolation until my blood counts recovered enough where I could wander the halls of the City of Hope. Crosswords, MP3 player, DVD player and movies only go so far.
Now in 2013 I'm on Revlimid maintenance therapy(no dex) and my MM markers show up as N/A on the monthly test results! 4 years and counting! From my experience I would do the process all over again.
Revlimid on brother
Awesome! So glad you are doing well, Bill!
Hi Pat,
Yes, you are right on.From my research my understanding is that if all goes well you only get half the time the original transplant achieved.Plus you are so darn sick for several months ( or at least I was). It is an individual decision..weighing and balancing outcomes vs risks. On the other hand are you going to feel crappy being on and off chemo from here on in. Ugh!
How did you feel on Revlimid and Dex? I hated Dex as my induction treatment...up...down...up...down! The truth now Pat, how did Revlimid make you feel?? Thanks for all the time you give supporting and informing others!
Brenda
Revlimid wasn't so bad at first; although one could argue 25 mg is too much. But after three or four months my white counts started to crash. Had to cut dose back, then back again. Dex doesn't bother me as much as others. Pattie swears she doesn't notice a difference in my personality; I'm pretty high-strung anyway. It does limit my sleep to five or so hours for a couple of nights. No big crash for me, which is nice. Since I've been taking Velcade/20 mg dex, my white counts and platelets are back up. Don't have to take warfarin daily anymore, which allows me to take more over-the-counter pain meds. I did have a PE/blood clots--most likely caused by Revlimid--early in my treatment.
Hi Pat,
Thanks for your input. Everyone has different responses, side effects etc from all these drugs. Guess I will find out when the time comes.
I will ask my specialist for more info so that I can weigh the pros and cons of Chemo vs a second ASCT. Ultimately it will be my decision.
Good luck with your own process Pat!
Brenda
Glad to help, Brenda! Right back at you!
hi pat
had second transplant to work with my clinical trial using genetically engineered t-cells. it now has been 21 months since transplant and t-cell are replicating themselves to become myeoloma hunters no maint. drugs
are being used at this time. my oc. has me on a 3 month restage schedule so i follow his schedule and "sweat" out the test results day but its another 3 months till its time to " sweat " again. my QOL has been good so i have really been lucky to have this CT and its results so far. 2nd transplants are a pitb but once thru one the second is mostly boring except i looked forward to this CT and what results it was going to bring. it has been nothing but good news for 21 months so i am thumbs up if OC recomends it.
marty melley
Wow, Marty! Do you know of others in the study that are doing well? This sounds like an awesome "boots on the ground" report about some great news! Regardless, glad you are doing well. YEA!
Thank you for the column....great food for thought.
Marty, that is great news. Was this the clinical trial at the University of Pennsylvania's Abramson
Cancer Center? I read that they have partnered with Adaptimmune with regards to the T cell therapy.
Yes, Marty, can you share more information, such as your myeloma type and protein biomarkers the T-cells are designed to target? Thanks!