Pat’s Place: Is Undergoing A Stem Cell Transplant Worth The Pain And Discomfort? Only If It Works
It has been just over one month since doctors took my stem cells off ice and infused three million of them back into my body.
Considering all I had heard and read about how tough the stem cell transplant process is, I think I am doing remarkably well.
Yes, I still tire easily, and I’m battling a number of annoying side effects. But I am able to write, get out, walk, and shop. And I’m driving again—all in a short 30 days.
But the process was far from easy. There was a week or so when I was kicking myself for ever agreeing to undergo a stem cell transplant!
But those bad memories are quickly fading. Like a mother who has recently given birth, I’m already beginning to forget about the pain, nausea, and discomfort I endured only a short month ago.
A dear friend of mine underwent a particularly difficult stem cell transplant three or four years ago. Three months after her procedure, she pulled me aside at a support group meeting and made me promise to never let her do that again!
Today she speaks almost fondly about the experience—understandable, since it worked so well and she is still in remission. But I can’t help but think back to that support group meeting, where she described her transplant as “the worst experience of her life!” and quickly added how she would “never, ever do that again.”
So I wanted to share a few observations about the process with you before time begins to soften and warp my memories.
Yes, as long as nothing goes wrong, undergoing an autologous stem cell transplant using your own stem cells may be—as doctors say—tolerable. It is also inconvenient, uncomfortable, and expensive.
Living away from home for a month is difficult. So are enduring weeks of nausea, diarrhea, and extreme fatigue.
It is also an expensive undertaking. Even with good insurance, the cost of outpatient housing and time lost from work hurts.
But for me, one thing, and only one thing, will make going through all of this ‘tolerable:’ if it works.
Earlier this year, a member of my new multiple myeloma group here in Florida underwent a stem cell transplant, only to discover three months later that her myeloma was still present and active. She passed away last week.
No matter how quickly I recover, or how good I feel, none of that matters if my transplant didn’t destroy the myeloma cells in my bone marrow. I won’t know that for several more months.
Everything is relative. I do know this much. After spending time with allogeneic (donor) transplant patients during my stay, my autologous stem cell transplant was a walk through the park.
I was an inpatient for a couple of weeks. Most of the allogeneic patients I met will stay hospitalized for months. Walking the hospital halls with several of these brave patients helped me put things in perspective – and kept me from feeling too sorry for myself.
One month post-transplant and counting. I sure hope it worked!
Feel good and keep smiling! Pat
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Pat, Thanks so much for this insight. It is appreciated by those of us who are caregivers moving toward the stem cell transplant with our loved ones.
I continue to send all good thoughts your way.
Best, Deb
I have my one year appointment at Mayo in the early fall, and I can say, reassuringly, that it was worth it. I feel and look better (many tell me) than I have for years. Yes, years! My count didn't drop to zero (or undetectable) until about three months.
Feeling this good now was worth it, although, I sounded just like your friend a few months ago. I'm still not sure I'd go through it again, but "who knows what the future will bring." -- Our motto.
Hang in there. Your hair will take a little longer than you expect but will start to "baby hair" in about three or four months. Mine came in curly and thicker. The picture of me on this post was taken after about six or seven months.
Boy, are we with you, praying and cheering for you, Pat, and also your brave wife!
Julia
Pat: I, too, hope that your transplant worked! I can't tell you how much I appreciate your constant optimism and outlike on life. You inspire me to be the same. My husband underwent a stem cell transplant 3 years ago and was in complete remission until just recently, so we may be facing another autologous transplant in the near future. Thank you for sharing. My prayers are with you.
Yes Pat,
I totally agree.I had my asct in march of 2006. It was also the worst experience of my life. I'd never been away from home or my kids for that amount of time. BUT, it did work and I had 4 great years of no treatment except aredia. It was wonderful and at times I forgot I had this weird disease. But I relapsed last June, not too severe. M protein .3
And had a rib fracture ,which I got from coughing with a cold.
So I did rev for 2 months, no response, added dex and wow within 3 months I was back down to no detetable m protein. We went 4 more months and now I'm off all meds except aredia . My new bone survey showed no new lesions. So the doc said I'm in CR.
So yes it was completely worth it and it worked.
Kind thoughts to you,
Christina in california
There in lies the rub! I overheard a woman in Arkansas on my last visit talking about how she had been in remission for a good long while and so happy, that she didn't even think about MM anymore except when she was called back for tests. But... this floored me, she said she was in and out of remission for TEN YEARS! TEN YEARS! Before she got stable. Goodness, Gracious. I thought to myself, "if you knew that it was 10 years and you would win, I guess I could see it, but the problem is, you don't know if you will get there." I'm happy for her though. She looked great and clearly she was happy. But I still think about it... TEN YEARS! I'm such a wimp!
Hi Lori, I too am approaching my tenth year with MM. I have had 2 auto transplants and also an allo transplant. Many years of relapses and remissions, but happy to say I'm still here and doing reasonably well. I enjoy the good times with family,traveling,gardening and even working out at the gym. Yes, treatments are hard, but we have to look forward to hopefully obtaining remission. MM does become part of our lives, but don't let it consume our lives! Wishing you and others that are living with MM all the best!
Cathy
I was diagnosed with MM in November 2009. I went through the chemo therapy treatment for about 8 months and had my autologous transplant in July 2010. I developed sores in im mouth and throat and had to be hospitalized for almost a week. I could not swallow without extreme pain. I guess I did not eat/chew enough ice cubes just before the transplant. Next time I'll shower in ice cubes, lol. So, my advise is, chew and swollow as much ice as possible. Just had my 1 year appointment and this far no myeloma has been detected, whoo hoo. Not bad for one who was diagnosed at stage III. Keep hope a live. We serve a powerful God who is in control of all things, even MM.
Alida
I want to thank all of my wise and supportive readers for their insight. Reading the comments is as insightful (if not more!) than my columns. I believe I learn more from all of you than you learn from me!
Pat
Hey Alida-
I chewed so much ice for two days, to this day I can't stand looking at ice, especially in a Styrofoam cup. Ugh! But I only had a mild sore throat, so guess it was worth it. Any tips on how to calm my stomach down and get rid of all this extra acid keeping me up at night? Pat
Hi Pat, about the stomach it will go away " eventually ", but I've suffered from reflux since I was 13. I take prescription omeprazole(prilosec), you could try the over the counter form. It did help me some, but sorry to say it just takes time. I know you hate bmp's, but after my sct I had a bmp done at 45 days post transplant (0% plasma cells) and just recently 6 months; still 0%. The reason might be because I'm nonsecretory and also my transplant doc still has trouble believing I went from 70% to 0% plasma cells in 4 chemo cycles. I would do it again no question asked.I know some people have lots problems with a transplant, but I think sometimes doctors over exagerate the problems; they had me half scarried out of my mind before it. I almost chickened out of it the day I went to the center, but I did it even tho I was going to miss my anniversary, christmas and my mother was dying from her cancer. She told if I went home to NJ to see her instead of doing it she going to "royally kick my butt." She was scicilian and past away the day I got out, so I think she knew I did well. So after that I look at anything coming at me from now on as a piece of cake and my reg. oncologist is hopeful about my transplant after some the new study reports; he is hoping for a long remission. Get well and enjoy how you feel it gets better every day. Dee
Hi Deidre-
So glad you are doing well! Yes! The Beacon just featured a promising report which should reassure you and me that our transplants should last a while. The key is we both had clean BMBs. Good luck to you--heck, to both of us! Pat
Hi Pat...so glad to hear the auto went well. I had an allo at Moffitt four years ago this month and I can say that even though the mm is now back, the transplant gave me four years I wouldn't have otherwise had. It was worth it and I view each treatment phase (chemo,transplant,remission,chemo,etc...) as a stepping stone to the next until one day when our "gleevec" will be found. Following your blog has brought back all of those memories from that time. It was so hard to make that decision to transplant...and so easy at the same time. A "no-brainer" as my daughter would say. They are really great at Moffitt arn't they!? You're lucky...you were in the new transplant wing...I had my tplant in the older wing: small rooms that felt more like prison than hospital
But the nurses really made the difference...they are the best. Well, stay healthy and I'm rooting for your bmb to be clean. Michelle
Pat,
I concur with Deb. As a caregiver in anticipation of my husband's stem cell transplant, your reflections are very useful. Thank you for sharing. We continue to keep you and others sharing in the forum in our prayers. Cheryl
Michelle-
Four great years. You have more therapy choices now than you had back then. And with an allo, drugs which didn't work before might work now, right? What are your treatment choice(s)now? Best of luck and thanks for sharing!
And thank you, Cheryl, for the kind words and especially the prayers! Pat
Hi Pat
Had my SCT in November 2010. 3 weeks of hell but at the same time a marvellous experience of being surrounded by people who care - the doctors and nurses on the ward who do their utmost to send you on your way. Then the slow recovery back at home with each day meaning that one fewer thing made you feel sick, one more stair before you had to stop and rest. And finally after about seven weeks I could even drink tea - the last thing that made me nauseus. Now in CR since February and getting checked every 8 weeks rather than every 6, back at work full-time and cycling 12 miles a day there and back. I'm just enjoying the feeling of being normal again! and for me that means it worked. If it comes back tomorrow, well that's a whole new journey now, but down a road once trodden.
Keep up the good work
Steve
Hi I'm trying to decide what I should do about my SCT. I can do it. Im 40 & in good health but my kappa lite count has jumped 110 points after being on Revlimid 10mg daily for 1mth. I just had a Biopsy(BM)& if it's less than 7% infiltration both my Docs says to get it done asap. My biggest concern is my caregiver. What kind of care do you need after released from hospital? I will be away from my family& my son for the 1st time ever ...I can't fly for 100 days meaning if my Dr let's me return home I'd have to drive from CA to Alaska in mid Oct. I do have someone who can drive me but my CA Dr says I need a caregiver for the 4-6wks after SC & that I can't do SCT without a caregiver. my Alaska Dr says just go don't worry it will all work out. The place I'll be staying at is a community Place for anyone who is a patient or family of patient. My Ak dr said just bring my 15yr old but the house staff said if he's under 18 he can't be there with out an adult. My Ca dr said I'll be in the hospital for a couple wks & my son can't stay in my room due to risk of infection.
Michelle
Hi Michelle,
There was a long discussion the Beacon's forums about stem cell transplants and what sort of impact they have on what you are, and are not, able to do after the transplant. The discussion is here:
http://www.myelomabeacon.com/forum/stem-cell-transplant-and-ability-to-do-light-work-t464.html
Obviously, each person reacts to the transplant differently. But the individual stories there may help you get a sense of what's awaiting you if and when you do your transplant.
If there are other questions related to the transplant you'd like to ask, the forum is the best place to ask them.
Good luck!
Dear Pat,
I sure hoped it worked, too!
Your article, and everyone else who commented, gave the clearest picture of the sct experience that I've had so far.
Thank you to all of you for sharing. You are in my thoughts and prayers.
I look forward to next your post Pat.
Linda
Steve-
I'm sorry you were nauseous for so long. But it makes me feel better, knowing it isn't unusual for me to still be that way after five or six weeks. Thanks! Best of luck- Pat
I think it's great to have real information from the patient's point of view about transplant and other mm treatments and appreciate Pat's sharing.
Pat wrote of his personal observations of those who had allogeniac transplants as compared to those who had autogous transplants. I had both and am writing to let anyone considering this know that it is not always so bad. I did both transplants on an outpatient basis and while the allogeniac transplant had a longer recovery period, I was far less sick after this transplant than after the autologous. The verdict is still out on allos in terms of long term survival.Although some studies show similar auto/allo results, there are indications, according to my oncologist, that allos may have better survival rates after 5 years. They primarily do "mini-allos" on myeloma patients and they are mostly done as part of a study. I'm healthy so far and not on meds 3 1/2 years after diagnosis. I don't know whether this was the best choice, but I'm very, very grateful for my current good health.
KCH-
You must be tough! Glad you are doing so well. Maybe one reason allos are so hard is because a lot of patients getting them are already sick. The allo is the last resort for a lot of blood cancer patients. I think this skews the survival numbers and can make recovery even tougher. Sounds like you were lucky not to have too much trouble with host/graph or other complications. I take my hat (which I'm wearing to cover my ugly, bald, post SCT bumpy head)off to you! Pat
Hi Pat,
I've been following your column, and keeping you in my prayers for a smooth recovery and great outcome in your ASCT. My husband was diagnosed in Aug 2009, and after 4 courses of induction chemo, underwent 2 stem cell transplants, 3 months apart. The second was much easier on him (and me), as we knew what to expect, and could anticipate problems sooner. For him, dehydration was a big issue, so we were much more proactive, and had an uncomplicated 2nd transplant. Like you, we were given advice about eating ice for a while before the dreaded melphelan, and after, as well. My husband chewed ice and froze his insides well, before, and ate popsicles and smoothies afterward, until early evening. It worked well for him, as he had a minimum of issues. He also was faithful in using the mouth rinse that was given to him. His doctor put him on Pantoprazole ( a version of Prilosec)and it has helped immensely with the acid stomach and reflux. He took it throughout transplant recovery: 2 - 3 tabs p/day, and now takes just one a day as a preventive measure. Also our wonderful doc recommended eating lots of Greek yogurt, because of the very high probiotic content. It restores the balance to your insides and is very healing, especially if you have gone through chemo, or prophylactic antibiotic treatment. It has helped him so much, and we continue today to enjoy its benefits. We use the plain Fage Greek yogurt in place of sour cream, on baked potatoes (great source of potassium), as a base for dips, and dressings, with honey on fruit, etc.....its wonderful.
Good luck with your recovery, and our prayers will continue for you.
By the way, we just returned from a full check up and testing incl. BMB, from Little Rock, where my husband underwent his tandem ASCTs, and he is now in stringent complete remission! We are blessed and thank God for each precious day as a new gift to enjoy.
Blessings,
Debi
Congratulations to you and your husband, Debi! Great to know all of that discomfort and inconvenience paid-off and he is remission- Pat
God bless everysingle one of you brave soles . You are all my heores in life and I don't know what I would do with out any of you...
Lori, I thank God for your postings and every single chance have to read what you write. I know you are your husbands caretaker, and exceptional one at that. When we all took our wedding vows we made a promise to be there through think and thin, it make me think about how special you all realy are.
Pray for me to have the strenght to be there for you when you need me to be there for you as a caretaker should be....
It' not easy and don't ever forgrt it...........
John......Pat What can I say...Pray for a cure for all caner someday..
It's a terrile disease.....God pray for all of us God is Good!
Cancer is a terrible disease. My prayers are with our fellow patients/survivors/caregivers as well- Pat
Pat-
It's great to hear that you are recovering nicely. I've told people that the transplant wasn't fun, but it wasn't as bad as I thought it would be. I also said afterwards that I wouldn't do it again because my m-spike was the same after the transplant as it was before the transplant. That was a bummer! But, 7 months later all of my numbers began to move towards the normal range and have been there for 11 months now. The m-spike has begun to climb minimally, but still not in the range where my oncologist feels it necessary to restart treatment. And, I feel good!
I had nausea for quite a few months. I don't think it was until about 10 months, or longer, that I was able to eat almost everything again. The actual vomiting stopped after about 3 months. There still are a few things that I can't tolerate the thought of because they set off things as soon as I took a bite - pesto, or anything with a strong basil taste, and oranges in particular.
Things will slowly begin to return to normal. I'm glad that I had the transplant, now. Life is a lot more fun again.
Nancy in Phila
Hello Nancy-
That's a long time to be nauseous! Sounds like you may have had auto host/graph or some type of infection. My goodness!
I'm starting to feel a bit better by adjusting what I eat and managing symptoms with meds- Pat
Hi, Pat. I am very happy to hear that you are weathering well! Good news, indeed! Thanks for your ongoing reports.
I agree that a valid litmus test for a SCT's success is if 'it works'. If you are like me, you failed prognostication in school, and have to rely on the best info you can gather 'going in' and, in my case, at least, a pinch of faith. I felt that the potential side effects of my tandem SCTs were worth the risks, but was never 100% sure. I've been in CR since my first transplant in 2/09. The 2nd SCT (5/09)was much easier for me than the first.
In fighting MM, we choose a course. We have to. I will never know what the outcome would have been if I hadn't undergone SCTs. Our community will ultimately learn some sort of lesson from my treatment path when my life runs its course. The same with you and every other MM patient. Time will tell us if our SCTs were worth it.
I pray that whatever 'fuzziness' and uncertainty exists in how best to attack MM soon clears and that we begin to understand more concretely what optimal care should be. Did I hitch my pony to the best wagon, a pretty good wagon or the wrong wagon? Time will tell.
I hope that you feel better and better each day! Sean
I'm not sure there is a right or wrong wagon, Sean. Who is to say there isn't more than one way to stay alive here? Except for the very fortunate few who find themselves "cured," either by way of allo SCT or possibly your aggressive route of tandem transplant and Total Therapy, aren't we all just trying to live another day? I hope we all end up alive and well ten years from now... Hey! We should schedule a party! Pat
Hey Pat & Co: According to my oncologist I am considered to be in remission as of 08/10/11....Yea. The session with my Doc was recorded. If you would like me to email I can. I now start my Revlemid maintenance starting Monday. I will see the Oncologist again in 5 weeks so he can monitor my blood work and keep track of how I am doing. Today I go to get my immunizations. With any luck I will be back to work by the end of the month. I am not cured but the Doctor is sure a cure will be found soon. I don't know how long soon is but I do believe him. I and my family are very happy about this news and I thank you guys for your continued support. Once I get this (PN) I will be even happier. I am looking forward to that eventual cure, it looks promising (Gene Therapy). God is good...
Excellent news, Nelson! Your positivity is positively uplifting! Pat