Sixteen days to go and so yesterday I spent two days at Hopkins getting a physical and having SO many tests/scans – yikes! They want to be sure I am healthy enough for the transplant – but I figure I must be to endure those two days! Thursday was a PET scan, which I’d never had before. I’d had several MRIs of my hip in the years before my hip replacement and they were awful, noisy and just not fun, but the PET scan was comfortable and I even got music – a nice classical playlist! When I initially was diagnosed with multiple myeloma I had x-rays of my whole body to determine if I had any bone lesions and the conclusion was that I had none. Probably 1-2 years later I had them again, and again they showed no signs. Recently some guidelines have changed regarding x-rays versus MRI to detect the lesions and I believe the recommended way to test now is via MRI. But I am happy to say that the PET scan showed absolutely NO sign of any lesions! You know, when you have this kind of cancer that is in the bone marrow and can seriously affect the bones, you can’t help but wonder when you feel a tweak or pain here and there if it’s really a bone lesion – so this was truly blessed news.
Yesterday morning started with a two-hour training class and tour for patients and caregivers. There were three of us patients, me being the only one getting her own stem cells, the other two getting donor cells. Interesting but somewhat overwhelming, hearing of all the potential side effects, importance of protection from infection, importance of staying strong despite a lot of fatigue by moving and exercising as much as possible. I can say that I immediately thought that I would definitely be moving, walking, whatever I could do, but in reality it may be easier said that done if I’m dealing with huge fatigue. I will have to get my brother to kick me in the butt if I haven’t at least done something in any given day! I will sure do the best I can because I know it will help. One thing the nurse said that really made me stop in my tracks was that essentially I am getting a new immune system and as such will have to get all my childhood vaccines redone – wow – that was scary to hear, but at the same kind very cool, to think that is possible at all! There is no question in my mind that Hopkins has all this down to a science – the nurse was detailed, thorough and quite clear on many things – this is the way it was done and they are prepared for anything that might happen – they know their stuff and that is reassuring. We had a tour of the in-patient, out-patient floor (IPOP) and were shown the treatment rooms, and surrounding areas. At any time they can have 50 or more people in there. I have to admit that as the training was completing I couldn’t help but go back to that fear place in me about all the drugs that would be going into my body and the effect they would have on my good cells, organs etc. But then I was reminded of two things: one, that many people go through this and other intense treatments and survive and even eventually thrive, despite the trauma to the body; and second, that my body is self-healing and cells do regenerate, and what I think and how I react makes a big difference to my own wellness and healing – so onward I go!
The rest of the day was exhausting, lots of blood drawn, medical history and physical, CT scan of the sinus area to look for any infection, EKG, echocardiogram, and lastly, pulmonary testing to test lung capacity. As I drove the hour-ride home in sleet and rain I reflected on all the nurses and technicians who treated me. They were all very kind and very skilled. In the lab where I had blood drawn there was a sign on his bulletin board headlined EMPATHY, what it was and how it needed to be applied with every patient they came in contact with. I experienced that and I so appreciated it as well. I slept like a log that night.
One more piece of good news yesterday. My stem cell transplant is part of a trial that is directed by my myeloma specialist. It includes only a standard autologous stem cell transplant (one’s own stem cells versus a donor). The research of the trial is being done to find out if altering the immune system by giving Tadalafil, and activated marrow-infiltrating lymphocytes (aMILs) can improve outcomes for multiple myeloma patients who receive the standard autologous stem cell transplant. Interestingly Tadalafil is Cialis and is approved by the FDA for the treatment of erectile dysfunction and pulmonary hypertension. I don’t know why this drug was selected for this trial. It is not approved for use in multiple myeloma, but the FDA is allowing the use of it in this research study. The aMILs are blood and bone marrow cells that are stimulated to react to certain proteins. These aMILs can then be grown and expanded in the laboratory. The hope is that the aMILs are more effective to target and kill cancer cells. The trial has two arms or groups and one group will get the aMILs and the other will not. My specialist had said at one time that if this trial was successful it could be a breakthrough for multiple myeloma – I’d love to be a part of a breakthrough and, as it turns out, I have been randomly selected to get the aMILs so I am excited about that! In early January I had a bone marrow collection and so that bone marrow has been taken to the lab to create the aMILs that will be infused into me after the transplant.
As I move down this road, I have this strange mixed feeling of excitement on one hand to get started and on the other the realization of what I am about to put myself through. It will be interesting to see how those feelings change as I move closer to the start date – stay tuned! And thank you for caring to read this!
Kathy
