I thought this might be an interesting discussion for the SDMB.
You may recall from this thread that I am an ER Doctor. Not that it is particularly pertinent to this discussion but I may be able to answer questions about my current problems in a more detailed manner than most.
Anyway, about 3 months ago I was diagnosed with multiple myeloma which is quite rare at my age (35). Read the Wiki for some further details, but essentially the disease is a bone marrow cancer; overgrowth of plasma cells (a type of white blood cell that produces antibodies for fighting infections). Fortunately I stumbled onto the diagnosis before any of the really bad complications had manifested (kidney damage, anemia, etc). Since diagnosis I have had several rounds of chemotherapy to reduce the number of abnormal plasma cells in my bones. There have been a few big advances in treatment of myeloma the last few years and so my chemotherapy was highly targeted with essentially no side effects.
I am now getting ready for a stem cell transplant. I will have my own bone marrow stem cells collected and given back to me. It will be a 6-8 week process with a 3-6 month recovery period.
If you have any questions about my disease or my transplant, please ask!
I hope your treatment is successful! Is this the same protocol developed at the University of Pennsylvania that turns the stem cells into T-cells that target B-cells? IANAD, but my husband had chemotherapy last year for CLL, and this may be a treatment in his future if it becomes refractory.
If they’re your own cells, how can they be considered a transplant?
What are they doing to the cells before implanting them back into you? I assume something must be done… what good is taking something out and putting it back in, unchanged? Or, are they cultured to reproduce faster and then put back in larger quantities? Or, could you explain how the therapy works?
Over the course of a few months, I was having various aches and pains in my back and hips which would go away with rest and ibuprofen. It wasn’t until I had some persistent rib pain that I went to my primary doctor. I eventually ended up getting a CT scan to rule out blood clot and found a bunch of lesions in the bones of my spine and ribs.
Nope, I’m pretty much a perfect candidate for the transplant. Doesn’t hurt that I’m also an employee of the hospital where the transplant will be done. I have MedCost.
No, just straight un-adultered stem cells. I’ll be given Malphalan to wipe out my diseased marrow and then given my own cells back. They will gradually repopulate my marrow over a 2-3 week period during which time I won’t be making any new blood cells!
Not really, as I noted above I’ll be getting my own cells back, known as an autogenic transplant. No one else is going to want marrow cells from a patient with cancer. There are other diseases for which an allogenic transplant is more preferred (stem cells from matching donor). So if you are interested, you should register with the National Marrow Donor Program
Well, you can collect stem cells from a bone marrow aspirate… but the procedure I’m going to have involves peripheral collection. I’ll be given a dose of Cytoxan to more or less shock my marrow and encourage it to produce more stem cells. I’ll get a Hickman Catheter which is essentially a temporary dialysis access. After the Cytoxan I’ll get about 10 days of Neupogen at home to further simulate stem cell production and release into the peripheral blood. Then I’ll spend a few hours on consecutive days hooked up to an apharesis machine which will separate the stem cells from the rest of my blood. When they have 10 millions cells I’ll rest another week or so before proceeding with the actual transplant which will be just like any other transfusion.
Hopefully my response to WhyNot answers a lot of your questions. I think the term ‘transplant’ is kind of a misnomer, but it’s the same procedure whether it’s autogenic or allogenic. The idea in my case is that they take out undifferentiated stem cells, kill off everything else (including the cancer cells) and put back the stem cells. If they didn’t take out the stem cells first I’d be shit out of luck after the Malphalan.
Thanks for the explanation. I’m off to google a few terms, and nursing interventions, 'cause I want to know how this might potentially affect me someday ;).
So what do you think of the babies murdered to treat you?
Just kidding! Seriously, what kind of reactions have you gotten, if you’ve told anyone about this treatment? Do they have negative preconceptions like the one above? I can’t imagine you’d hang around anyone as extreme as the above, but the debate has almost certainly caused some people to internalize the screaming by the social conservatives.
Yeah I haven’t had anyone actually say anything to me about that. Fortunately I mostly interact with other medical types. To clarify, the “uproar” regarding stem cells is all about using embryonic stem cells for research. I’m just giving mine back to myself so no controversy there.
I work in paediatric oncology and the only patients who get autologous transplants are those with brain tumours or neuroblastoma. Certainly those with cancers of the marrow don’t because they’d be giving their cancer back to themselves.
Your situation is certainly one I’ve never encountered. Hope the procedure goes well.
What is the conditioning regime for adults? How long do you expect to be in isolation?
My husband underwent this exact same procedure (autologous stem cell transplant) and is coming up on three years post transplant. Still testing cancer free, and feels pretty darn good.
We feel like it was the best decision we could have made given all the options.
My mother-in-law has MM also, but she developed it at a more typical age of 70+. In her case I don’t think she was in pain, but she did have a lot of anemia / weakness which was hugely debilitating for her.
Good luck!! I guess infection is the biggest risk during the early days; at least with an autologous procedure, rejection won’t be an issue!
My mother-in-law spent a year doing chemotherapy: dexamethasone, warfarin or some other anti-clot meds, and thalidomide. That knocked things back to a level where she’s pretty stable, though a transplant is always something they’re keeping on the list.
For folks who hadn’t heard of this regimen: yep, Thalidomide - same stuff that caused the ghastly birth defects. My mother-in-law never particularly saw the humor when we teased her that she’d better not get pregnant.
My knowledge of peds oncology is pretty limited, but I could see where they’d want to avoid autologous transplants in those cases which are typically related to more undifferentiated cells (lymphoblasts) and more closely related to genetics. In my case, plasma cells are about as far down the chain as you can get so I don’t think the risk of re-colonizing myself with cancer cells is as much of a concern. I anticipate a 2-3 week stay in isolation to wait for cell counts to bounce back.
Hope your MIL has a long and uneventful remission!
The thalidomide thing is actually an issue for my wife and me. My conditioning regimen included Revlimid which is essentially a second generation analogue of Thalidomide (I was also on Dexamethasone and Velcade twice a week). Unfortunately, my wife and I were just about to try getting pregnant when I was diagnosed so that’s a big no-no while taking the Revlimid and I’ll probably end up taking it for two years after the transplant as part of my maintenance phase.
