Myeloma Rocket Scientist: Happy Birthday, Dear Immune System
January 19 is the anniversary of my stem cell transplant. I celebrate the “birthday” of my immune system each year. This year was the 9th such celebration, which seems fairly amazing to me.
Before my transplant, I had read about a survivor who was hoping to get two or three years of remission from his transplant. His account really set my expectations. Of course, I now realize that things are not that predictable with myeloma: some people do better, some worse.
I was really lucky, getting seven years without treatment after my transplant. The transplant was in 2007, and I did not start treatment again until the beginning of 2014. My transplant was definitely a significant step in my life with multiple myeloma, marking the end of my initial therapy and the start of a return to an approximation of normality.
As virtually everyone who is reading this already knows, the term “stem cell transplant” is somewhat of a euphemism. The stem cells do not attack the disease itself. Rather, they prevent the “high-dose” chemotherapy that is administered beforehand from achieving a Pyrrhic victory by killing not only the cancer but also the patient. (Consequently, another term for such a transplant is “stem cell rescue.”)
The high-dose chemotherapy that is administered as part of the stem cell transplant process attacks and kills stem cells that continually produce blood cells, including plasma cells as well as red and white blood cells. Without white blood cells, the patient would have no immune system and could not survive. Re-infusing the collected stem cells into the patient’s body shortly after the high-dose chemotherapy ensures that blood cells continue to be produced and that the immune system is rebuilt.
On the one hand, a transplant is obviously a major event, since it is life-saving. On the other hand, the actual mechanics involved are quite minor: the infusion of several small IV bags of stem cells that were collected before the high-dose chemotherapy.
When I had mine in 2007, it was customary to have transplants as an in-patient in an isolated transplant unit in the hospital. I was in the hospital for 15 days. The high-dose chemo was administered on the first two days, then there was a day off, then came the transplant. After that, my red and white blood cell numbers were monitored as they first plummeted (the white cell number reached as close to zero as could be measured), then started back up. At that point, I was deemed safe to go home, although I was still not allowed to visit stores, restaurants, and the like until my new immune system was more “mature.”
I had been dreading the transplant for months beforehand. There were a couple reasons for that.
Firstly, of course, undergoing a treatment part of which can kill you is somewhat disconcerting, to put it mildly.
Secondly, since I had kept asking my oncologist questions about the transplant process, a few months after diagnosis he gave me a binder full of transplant information. This material included a photo of someone with a Hickman port, like the one that I would be fitted with for my transplant. I don’t think that I was quite ready to see the several IV lines dangling out of the chest. The idea of having something inserted through my skin and reaching so near my heart, particularly at a time when I would have a compromised immune system and therefore could be susceptible to infection, made me feel very uneasy.
In the end, though, the port (and the transplant as a whole) didn’t really seem too bad. Probably the least pleasant aspects were the nausea and lack of appetite. I am used to having a robust appetite, but pretty much lived off pretzels and dry cereal for a while. Of course, there are very good anti-nausea drugs which can help a lot. Unfortunately, one evening I decided that I was feeling good and didn’t need to take them. Big mistake! The next morning, a staff member came to ask what I wanted for breakfast: just hearing the words “eggs” and “bacon” set my gag reflex going. The following day, she barely popped her head around the door, asked “Do you want anything to eat?” and rushed off before waiting for a reply.
The stem cells for my transplant had been stored at a different hospital from the one that I was in, so I couldn’t help wondering what would happen if the car transporting them was involved in an accident. It’s a bit like the scene from the Woody Allen film “Sleeper,” where they are supposed to clone The Leader from his nose, but it is accidentally run over by a steamroller first.
In my case, since enough cells had been harvested for two transplants, things would presumably have been alright no matter what. Not surprisingly, there was no collision, and the second set of stem cells did not have to be used. I checked last summer that these cells are still frozen and available for use, in case I ever need a second transplant. They are.
It’s good to have options.
Trevor Williams is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Happy Birthday IS. Thank you for your information. My husband and I are just beginning our journey. Nice to see others doing well in their new normal
Trevor Williams:
Happy Belated Birthday! I thoroughly enjoyed your article and can definitely relate to it. I also have multiple myeloma and am currently celebrating 1 year 4 months after my transplant.
Congratulations on your 9th birthday. I am so pleased for you that you had such a durable remission. You write that you went seven years after your transplant without treatment. May I ask what kind of treatment you received when you relapsed? My husband has relapsed after his first stem cell transplant, and we are wondering if there are alternatives to getting the second transplant already now.
My husband was diagnosed with multiple myeloma in Nov 2014. We discovered this site last year and read it often. It is encouraging to read all of your stories and it helps us both. He is currently waiting for results of a test called Clonosight to determine if he will need a transplant. Thank you for sharing and we wish you well.
Yay. Congratulations. Nine years. That's so awesome! Your story gives me hope and inspiration. February 14 will be my 2nd stem cell bday. 5 years
I had tandem stem cell transplants. My first one was November 1 2010, and my second one was February 14, 2011. Still enjoying remission and no chemo! Thanks so much for your story!
I don't think he said he relapsed, Mourwarid.
I went 7 years too after a double transplant on Revlimid maintenance. It prolongs length of remission of transplant and may prolong survival too. It's great that you did all this with no maintenance, however, because now you have so much dry powder if and when you relapse, including Revlimid and Velcade, which I'm taking for my relapse for 40 months with stable disease. Congratulations.
Happy transplant birthday. I had a tandem transplant in 2014, May and December. In CR right now. Elected to have maintenance CyBorD and Zometa. Doing very good. Both of my ASCTs were without incident. Sure went a whole lot better than I anticipated.
Today is Day 322 of my husband's "new" life. We plan cake and ice cream for his First Birthday on March 11th.
Reading the Beacon shows the many routes taken in the fight against multiple myeloma. Different induction therapy protocols, some with transplant and some without, maintenance drugs vary. But one common thread comes through. We ALL gain incredible knowledge, strength, and hope from the shared stories. Thank you to all contributors. So greatly appreciated.
Happy Birthday Trevor. Wishing you many, many more!
That is wonderful to hear that you went so long without treatment after your stem cell transplant. How old were you when you had the stem cell transplant and at that time after the transplant were you offered additional treatment, such as Revlimid and/or Zometa? If so, did you opt not to take any medication?
Hey, thanks for the reminder. I almost forgot today is my anniversary!
Congratulations on your durable remission. I wish you many more years of remission and good health. I am about 15 months post transplant, currently on Velcade / dex maintenance after some hiccups with RVD joy maintenance. I find the drugs are harder to take after transplant, maybe that's just me.
I enjoy reading your columns – especially the ones about your work with NASA. That work, to me, is just about as important as cancer research, and I actually think they are related in terms of scientific investigations and discoveries. Like Biden's "moon shot" for cancer. Let's hope we can get to the "moon" with cancer, soon!
On behalf of my immune system, thanks to all of you for the birthday well wishes! Good luck to all of you on your myeloma journeys. I will reply in more detail to the questions and points raised soon.
Also, Andrew, congratulations on your anniversary! I really enjoy your columns. The one about being analytical and yet superstitious rang many bells for me.
Hello, and happy belated birthday. Reading your column gives me hope for the future. On February 9, I celebrate my seven-year anniversary of a stem cell transplant.
Your column often speaks to me personally.
Maureen
Happy belated birthday to your immune system, Trevor. I had my sixth anniversary of that in January also. I think it did help me to keep the myeloma at a really low level since then. Thanks for writing your column!
Sorry about being so slow to reply properly. Work has been a bit crazy for the past week or so. In the words of astronaut Gordon Cooper toward the end of his Mercury flight in 1963, when all sorts of things were going wrong: “Things are beginning to stack up a little”.
Wendy, you’re right, it’s “the new normal” for sure.
Mourwarid, I will probably write about my current treatment fairly soon, but to summarize, I’m on Revlimid plus occasional dexamethasone. As Robert noted, I don’t believe I have technically relapsed. My oncologist describes it not as relapse, but rather as “biochemical disease”: my blood tests results (IgA and kappa free light chains) show that something is not as it should be, but I have no actual myeloma symptoms.
Pmeckton, my impression is that, back when I had my transplant (at age 52), maintenance therapy wasn’t quite so common. Certainly, I was not put on anything then. Some years later, my oncologist said that, if I were one of his new transplant patients, he probably would recommend maintenance therapy. However, since everything was still going well without it, he was inclined not to start me on anything. It wasn’t until my IgA went above the “normal” range (the kappa light chains had done so already) that I started taking Revlimid. I am quite glad that I had seven years with no treatment, as everything has side effects: it was really nice to be able to avoid these for a while at least. Also, as Robert says, it kept the “powder dry”.
Ginger, I will have to read up more on the Clonosight test. Good luck to your husband!
Tamie, I’m glad everything is going so well for you. Happy stem cell birthday in ten days!
Randy, congratulations on having reached CR. And Nadine, congratulations to your husband on his coming first "birthday". We also had cake and ice cream on my immune system birthday: it was a good excuse for a treat! I too am struck by the many different paths that we take when dealing with myeloma. Presumably, with all the new treatments that have recently been approved or are currently under study, this diversity will only increase. That’s a hopeful sign when facing such a multi-faceted disease.
Ellen, I absolutely agree with you about drugs seeming to be harder to take as time goes on. I take dex far less frequently now than I did back in my induction therapy days, yet I feel like I make more of a fuss over it now than I did then. Pretty soon, just hearing the word “dex” is going to be enough to make me feel queasy. Maybe it’s just that I like complaining as I get older! On the parallels between space and medical research, it does sometimes seem to me that the excitement that surrounded Apollo and the Space Race back when I was growing up is now found more in the medical field, with all of the striking developments that are going on there. I think that’s why I went into the space field but our older son decided to study biology. It’s possible that, if I were his age now, I would have ended up doing that too.
Nancy and Maureen, congratulations on your sixth and seventh transplant anniversaries, respectively! Thanks also for writing your excellent columns.
Happy Birthday Trevor
We really like your idea of celebrating your "new" birthday. My husband is almost six months post transplant but, unlike you, his oncologist recommended maintenance chemotherapy for him since he appears to have an aggressive form of multiple myeloma. We were very impressed with your many years without treatment. That must have been wonderful.
Congratulations to so many of the commenters who have been in complete response for so long. You give us such hope!
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