Arnie’s Rebounding World: After The Transplant
I finished my stem cell transplant in August of 2006. As I mentioned in my last article, once engrafting of the stem cells takes place, most of the nasty symptoms from the transplant resolve fairly quickly. The lingering symptom was fatigue.
On the bright side, I was home, the worst of the treatment was over, and I was going to make the best of it.
Everyone said, “Don’t fight the fatigue, listen to your body.” This is true. If you need to nap, nap. Your body has been through hell and needs to recover.
However, I am also a big believer in getting moving again. The longer you stay sedentary, the harder it is and the longer it takes to regain strength and stamina. Physical activity also helps to overcome the fatigue.
It doesn’t have to be much to begin with. Start walking, even just out to the curb to pick up the paper, and then gradually build up to more. Try to increase it a little each day or every few days. It’s amazing what a difference this will make.
How long the fatigue lasts seems to vary widely from individual to individual.
For me, by about a month after my transplant, I was actually feeling pretty well. I was able to step up my exercise routine to riding a bike and swimming. I started going out to meet friends for lunch and to return to normal life. At that time I was determined to return to work as soon as I possibly could. At 7 weeks post-transplant, I returned to work on a reduced schedule.
What about the results of the treatment? After four cycles of chemo and the stem cell transplant, I was ready to be done with multiple myeloma forever. Of course from everything I had read and learned about myeloma, this was not realistic. But I had heard plenty of stories of people with very long disease-free intervals. I hoped this would at least be me.
During my induction chemotherapy, my monoclonal protein numbers, or M-spike, dropped from 7.5 down to 0.5. Both my doctor and I were very optimistic and happy with this response. At my first blood tests after the transplant, my M-spike was still 0.5. I was disappointed to say the least.
My doctor said, “This will drop further, and you have a VGPR – very good partial response. From a prognostic standpoint, a VGPR is just as good as a complete response.”
I have heard that over and over again, but it’s still hard to buy. We all want a complete response. At least for a period you can feel like the disease is gone, even though with myeloma it is incorrect to use the term “remission.”
I pushed my doctor further. I wanted to know: What does this mean? What’s next? What’s going to happen to me?
Very clinically and matter-of-factly she said, “Average time to relapse is 18 months to two years. It’s a very heterogeneous disease; everyone is different.”
“That’s it, we just sit back and wait,” I thought.
I have heard it said that the two worst days of a cancer patient’s life are the day of diagnosis and the day treatment stops.
We briefly discussed the option of Revlimid (lenalidomide), but at that time the data on Revlimid maintenance post-transplant was not out yet. Had those studies been available, as they are now, I almost certainly would have opted for Revlimid. The current data on Revlimid maintenance shows that it delays time-to-progression, but does not necessarily improve survival.
At least you have the feeling of doing something active to fight the disease. Every morning when you get up and take that pill, you’re doing something, being proactive against the disease.
One of the hardest things about multiple myeloma is having a disease we know is coming back but no way to know when and how it will manifest. It is always the elephant in the room.
So for me at that point, there was nothing to do but go back to life and work as normally as possible while holding my breath every month for the results of my blood work.
My original plan was to go back to work as soon as possible on a somewhat reduced schedule and then build back up to my previous level of being insanely busy. The realities of having multiple myeloma were beginning to sink in, and I approached work and home in a new light. I resolved to work less, try to enjoy it more, and spend more time with family. And wait.
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You describe the situation well. "Insanely busy" does not work for me anymore either. I prefer to pace myself. The process of my recovery has been a fine balance between pushing to be more active in order to build strength and also allowing myself to sleep and rest more than I once did. It feels right.
Nice Post! The fatigue is "profound" as patients shared with me again and again, as I struggled with my husband's sedentary activity (a bit of an oxy-moron)! But over time, bit by little bit, it began to abate and he has out walked me, looking back and calling me a slow poke! It is sweet.
We also work hard to not think about the relapse questions with regard to MM. It steals your life away today.
What an incredible story Arnie!!! I too have multiple myeloma and have gone through 3 stem cell transplants in the past 9 years. But I am in complete remission for a year now and have a somewhat normal life. I think we both agree, life is what you make it! I just began going to the gym and find this helps regain strength in my legs and also gives me a sense of "normal".I am happy for you that you have come this far, and have such a good attitude about enjoying life. I echo your fears about it returning. But I try to enjoy the time between checkups , travel a bit and spend quality time with family. In actual fact, there isn't a lot of choices when dealing with MM. We take our treatments, eat healthy, stay active and above all, keep a positive attitude!!! I wish you all the best!!
Great advice, Arnie! Keep moving! I'm going to share your story with my wife... She is anxious about my SCT, which is scheduled for June. I can tell you will be an excellent addition to The Myeloma Beacon team! Welcome! Pat
I too try not to dwell on the relapse issue but for me relapse has become a part of my life and as I mentioned it is always the elephant in the room. I also try to be a realist about the things. For me the the key is to try to stay informed and educated as much as possible. I find comfort in trying to think one or two steps ahead and knowing that there are options out there.
Pat,
I'm on day 19 after having my SCT at Mayo Clinic. I'm 46 and was diagnosed last September, so this is my first SCT. I've read many different experiences on this forum and thought I would try to set your wife at ease. My SCT was very uneventful. No mouth sores (I did chew on ice chips during chemo infustion), a little bit of an upset stomach but took compazin for a few days and never had a real problem. In fact we joked with the nurses that I'm the only one going home after a transplant who may gain weight. Haven't lost a pound. I would have gone home at day 17, however, my neutrophils are being stubborn and are going up very slowly. I would have to say, that for me, this week waiting for the neutrophils has been the hardest. We've been here almost 6 weeks in an apt. as Mayo does SCT as outpatient and I am ready to go home to my 11 and 13 year old children. Everyone reacts differently, hope your experience goes as smoothly as mine.
Best of luck
Julie
Hi Pat, I've been wanting to post to you that my stem cell transplant was also pretty uneventful. I had mine in 2007 at age 63. No mouth sores, some nausea, very tired, no weight loss and I too could have used some! I was an outpatient at the Hillman Cancer Center in Pittsburgh and was able to stay at home and go there daily. I slept in my own bed! Was hospitalized the weekend before my stem cells were collected with a fever and pain. Turned out I produced around 30 million stem cells and my body was reacting to the accumulating load. My cells were collected in an amazing 2 hours--total, in one day. I know we are all very different and I am glad I had not read some of the things I have now before my SCT. I hope that the above post and mine will give you and Patty some balance about how they can go. The worst part was removing my port as I convinced myself I would bleed out. It was out and done before I knew it. Living in the now, Linda
I had an autologous stem cell transplant March 11, 2011. My IGG level back in August of 2010 was 3251. It is now 943. My M-spike went from 2.7 to 0.6. My free kappa lt chains went from 594.66 to 3.59. My egfr was 59 and now is at 74, but as of now it is normal. My LDH went from 130 to 267 but now is back to normal. I would like to know if these numbers will continue to improve. My main worry is the M-spike and any potential kidney problems. My Doctor considers me having a very good partial response which he considers it to be as good as a complete response. I have had a good solid few days starting from 4/27/11 till now and have actually gained a pound after losing a total of 22 pounds. I still get fatigued and tired quickly but it is getting better. I am starting to get some facial hair but my head is still bald. Nausea seems to have subsided for now. Hopefully I am starting to get over this hump and moving in a positive direction. I won’t know till March if I will need a second transplant or decide to go on Revlimed therapy or some other maintenance therapy. During my transplant and Melphalan chemo I went through all the side effects. (Nausea, diarrhea, mouth sores etc.) I also had to get a few blood and platelet transfusions. Because of the mouth sores I was pretty much not able to eat for 3 weeks. It started off okay but once those side effects kicked in it was not fun. But hey you do what you have to do to get through it. Having a good support team in the form of family, friends and faith helped me a great deal and is very much needed in ones recovery process. Everybody’s process is different from what I am reading on other post. This just happens to be my experience so far. The Myeloma Beacon is great source of inspiration and a great resource for MM patients. Thank you.
Yo tambien recibí un autotrasplante en marzo de 2007.
Desde entonces, tenía 64 años, hago una vida totalmente normal, sin restriciones de ningún tipo,sin tratamiento alguno de mantenimiento, ESO SI con el elefante en la habitación y cada tres meses una revisión médica.
Y cuando vuelva....a presentarle cara, mucha serenidad y confianza en los profesionales de la medicina, que los tenemos muy buenos y llenos de sapiencia.
Todo el proceso de mi enfermedad lo han llevado en el Hospital Clinico universitario de Salamanca, donde el Dr. Jesús San Miguel lleva la batuta de un equipo excelente.
Thanks Arnie,
Your honest expression of the elephant in the room is something that speaks to me. I had my second chemo today.
I've decided to embrace the dam# elephant and accept the changes that are already mounting. One great benefit of having such a creature in the living room is the livestock on the lawn is almost meaningless.
I too want to rush to maintain my work schedule and expand our business to protect my family. Its been hard to realize that the routine of chemo alone is consuming my life while Myeloma consumes my bones.
Congrats on some good numbers and helping to leading the way for me and mine.
Bob
Hi Arnie!
Great post! I was diagnosed in Nov 2009 at age 42. I naively thought that I would go through treatment and be back at work in no time. I look back at my old work like and it was insanely busy. At that time I really enjoyed my 10-12 hour stressed-filled days. I was the one insane! I did go back part-time in Sept 2010 following the SCT in April 2010. (Sorry, Pat. My SCT time was not fun!) My problem was trying to do what I did in 10-12 hour days in 4. It doesn't work and the stress fed the side-effects (namely fatigue). I am now taking a 3 month leave and will go back in June. This time I will start with 3 8-hour days. If anyone has any tips on how to stop being a workaholic, I would love to hear them! My mantra for now is "Be good at work; Be great at wellness!"
Good Afternoon Arnold,
I breezed through my allo sct and engrafted 100% with my sister's cells. I was feeling so good, energy was returning, etc. Unfortunately the myeloma still existed, 19% left in my bone marrow, compared to 7% pre-transplant. So back on Revlimid.
My question to you is, did you find the rev/dex zapped all of your energy? I now know it was the rev, the docs have me on a brief break from the rev due to my low counts, two weeks and the the last two days have been glorious!!! Energy bounds! Tuesday I am sure they will put me back on it. Blah!
Tricia
Tricia
Everyone reacts differently to the medications. I did not have much trouble with fatigue from Rev/Dex and tolerated it really well for quite some time. I will talk more about this in my next article. I did however have very severe fatigue from pomalidimide which is in the same category. Some of the symptoms can be helped with dose reductions as well. I'm sure this is something your doctor will consider, or something to discuss when you restart
Dr Goodman
I'm a former patient of yours. Unfortunately I never got to see you before you retired. I cannot think of enough kind words to say about you, and saying thank you hardly seems adequate. Other then being the best ENT and providing the best care anyone could ever need, you are also a wonderful person. When I read of your illness, a shadow fell across my heart. You will be in my thoughts and prayers. Thanks again for keeping my sinuses in line all those years. You are a good soul. God bless, Jamie Boles :u)
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