My last induction chemo visit was fairly uneventful. Next Monday is supposed to be my last one. But at the same time the visit left me with many unanswered questions and an uncertainty as to what to expect next. The information I have been had all this time was what I was given in February when I had my last Bone Marrow Biopsy which revealed that only 25% of my marrow was affected and the genetic screening revealed the chromosome 13 deletion and I was stage 1 at ‘moderate risk’ for treatment success. Then I was told that I would be heading to Barnes Hospital to have the last of the preliminary labs to determine if my body is ready to handle a stem cell harvest, with a stem cell transplant shortly to follow. Dr. Vijs office gave me dated estimates, they said May 7 for the testing, and the results, possible harvest the second week of May, and that would lead into the 1st week of June.
I have been obsessively trying to make plans with all this information. Now I learn that this process is not as simple as that, in fact it is very common for the doctors to give you a date, and your ‘actual timeline’ being months and months apart from your initial estimate. No one told me this; I had no clue, otherwise I would not have been making so many plans, such as calling family members and trying to set up summer trips for my girls while I thought I would be checked in to the hospital. I am not sure why they would give me dates if those dates were merely arbitrary. It would had been helpful to know that those dates would be changing as the treatment progressed.
The aggressive way the nurses and insurance companies have been pressuring me to get all the paperwork completed, led me to believe we were on a pretty strict timeline for getting this transplant started because that is all they talk about, the importance of tackling the myeloma as soon as possible before any more tumors develop or bones become compromised. Monday, Dr. Ali told me that he has looked over my test results historically since November 2012 until now, and here has not been any significant changes in my numbers. I asked him what that meant, and all he said was that my percentage of myeloma cells in my blood were so low to begin that there was not enough of a change to register and the only way he can tell me if the chemo is working, was to check my protein levels in my blood by doing a biopsy and protein test. This confuses me, because I have now been through 4 cycles of chemo, which in reality ‘should’ be showing ‘something’ significant on all of my weekly lab work, if it is going to show anything at all, and I am just wondering if he is choosing not to tell me as to not cause undue worry without having the results of the bone marrow biopsy first.
I just wish doctors sometimes would give me the cold hard truth, rather than sugar coat things, I would rather be prepared, than be given false hope about something. I asked him if a lack of response has anything to do with my chromosome deletion, because I was told the chromosome issues can make some types of chemotherapy drugs less effective in treating my particular myeloma depending on what type of genetic markers you have. And he seemed to avoid answering the question directly, he just said that he does not want to say anything until he tests my bone marrow and protein levels. I needed to do research about this whole bone marrow biopsy, and the meaning behind the M Protein levels, and what exactly this cancer is doing to my body because I have been confused about it for a long time.
Apparently the best way to get this measurement of the M Proteins is to get a good bone marrow sample and this will give a little more accurate determination of whether this current induction therapy is working (still not 100% effective, depending on what part of the marrow that is sampled). The goal of the induction chemotherapy is to put my MM into remission or just ‘stun the cells’, which is basically to stop the production of those Monoclonal plasma cells from reproducing and crowding out the good plasma cells. I have to be in complete remission before they will attempt to harvest the stem cells. The stem cell transplant is supposed to be the ‘knock out punch’ to the cancer cells. I did not understand all of this when the chemo treatments started.
There are still so many questions I need to have answered and clarified. I was able to ask someone in my support group and I was able to get this information: A breakdown of what Multiple Myeloma does to the protein levels in your blood: The M Protein is this: my body manufactures a spectrum of different types of proteins called globulin that are part of my immune system. These many different proteins help the immune system by identifying invaders and pointing them out to white cells that go in and kill the invaders. The essence of Myeloma is that bad plasma cells cause one type of protein within this spectrum to be over-manufactured. This protein, instead of being distinct within a huge spectrum of proteins, is duplicated millions of times over with the exact same makeup. And it doesn’t identify invaders. And your body can only hold so much protein so it crowds out the healthy or good proteins and plasma cells. Since this protein all comes from the same clone — the same original cell that duplicated itself — it is said to be Monoclonal…hence M Protein.
The Bone Marrow Biopsy is said to measure the M Spike which is the measure of this monoclonal protein relative to the overall protein in my system. Looking at my overall protein numbers is not totally accurate, but is the only way to monitor the progress of the cancer. Some people have systems that do not manufacture M protein in response to bad plasma cells. Because of the disease my bone marrow will be unable to produce the normal levels of platelets, white blood cells, or red blood cells because the raw materials that are needed for the manufacture of these cells (the process of which is called hematopoesis) is crowded out by the bogus plasma cells. Thus, I get anemic and it fluctuates the numbers of my red blood cells…and I can have issues with blood clotting from insufficient platelets…or I can get infections frequently due to insufficient white cells.
Myeloma also eats the bones, so it is really important to monitor my calcium levels in the blood to make sure I am not secreting too much because it could become too much for my kidneys to process. I have been trying to understand what is supposed to happen next so I can plan, but I am learning now that there really is no way to plan, because even the doctors do not know how I am going to respond to the treatments because every myeloma patient responds differently. What he did tell me was that the regimen he has me on is 95% – 98% effective for all patients, so he ‘feels‘ the treatment he has me on will work. So, my confusion is this… why did he say that there has been ‘no significant‘ change in my numbers in 4 cycles so far? What is bothering me is all this planning I have been doing to prepare for a possible transplant in June might all be for nothing, if I get my bone marrow test results back and I am not responding to the current chemo regimin.
I have talked with people in my support group and they tell me that it is perfectly normal for the doctors to give me an estimate, and the timeline for treatment being many months farther out than anticipated. I have to take one day at a time and somehow figure out how to relax and wait for whatever they say comes next. I have spoken to some people, and they were put into such a stringent remission with their induction therapy, that the stem cell transplant was pushed back indefinitely until the myeloma showed itself to be more active again. My doctor tells me that will most likely not be the case with me, but again, there is a lot of ‘most likely’ or ‘seems like’ or ‘probably’ or generalities getting thrown around and I do not like that. I have been told that there are three different theories on when and why someone would get a stem cell transplant. One is to not do one until other drugs fail…this is the most conservative approach.
The other end of the spectrum involves doing two of them back to back (tandem) along with many other types of chemotherapy in the hopes of curing the disease completely. In the middle — mainline therapy for the moment — is the idea of doing the transplant after a period of “induction” with other chemotherapy drugs (which is apparently what I am on now). The reason for this is to “lock in the gains” achieved by induction, and prolong the remission beyond just the normal 2 to 3 years at a time, which is what most people experience after getting a transplant, hence why the disease is considered incurable, because it always comes back, even with something as aggressive as a stem cell transplant.
I have been frustrated this week because there is a great chance that my numbers are not where they need to be and there might not be anything I can do about it. I know there will be a transplant in my future, but knowing ‘when’ is not something I will have the luxury of knowing. It is tricky, they have to tweak my treatments and my numbers to get them all just right, and right when the iron is hot, they schedule the procedure and they just get it done. haha. And the doctors really have not explained my myeloma with me very well, because I think I am still way too confused about my case and if he thinks that I will respond well to the treatment plan they have me on.
All the outside factors going on in my life have made it difficult to take charge of what is happening. I thought I would be going in at least for a stem cell harvest in May, and I even called my mom and asked her if she wanted to plan to come out for that one week just to sit with me through it, but there is no guarantee of that happening at this point. Everyone tells me I need to relax and take this all one day at a time. I wonder if anyone else could be any more successful than I am at ‘not‘ thinking about these things? I realize there are things I cannot control, but can any of you imagine what it would be like to spend every day waiting to hear about test results, and waiting for information that you can do nothing about, and a future you cannot plan for? It is not easy.
I would like to have an idea of what to do for my house, my children, and my pets. I would like to plan for the classes I am taking, and to even see if I could work a part-time job because I still need to make some supplemental income. I am in limbo and unaware of what is happening next, I cannot do much of anything because I am in this holding pattern. In the beginning it seemed easier to deal with because, I knew I had the disease, I knew the basic protocol for treatment of the disease, and I thought I knew what to expect. I guess what I was unclear about was the timeframe in which all of this plays out. That is something I should have been better at pinning my doctors down about. Each time I ask them, they do not give me straight answers, they are always telling me to lean back and let the medication do what it is supposed to do, and ‘we will see what we see when we see it’.
This is not my favorite way of living, in case you all have not figured that out yet. This disease has so many different treatment approaches, and it is still incurable, so everything the patients are going through are largely experimental, and each success is great, but a successful treatment for one person can still not be a match for someone else. That is what is the worst part for me. You basically have to just take the treatments they throw at you, based off their knowledge of the myeloma, and hope the straw you draw is the right one for you. If it does not work, you draw a different one, and see how that takes, and so on and so on. There is no set standard, but the only protocol that is approved by insurance is the treatment plan I am on. The induction chemotherapy, followed by the transplant, followed by a regimen of maintenance chemo to keep he myeloma at bay for the rest of my life and treating it like a chronic disease.