As you may know, in October Chris had a PET scan where they discovered several masses in his lower abdomen. Since this was the first time he was able to get a PET we didn't know if they were old or new but they were concerning and a sign that DRd wasn't working. Dr Sborov decided we should change chemo to EPd and we just finished the 4th cycle.
In December we noticed a large bump on Chris's abdomen. It had been accompanied by a sharp cramp so we thought was likely muscle related. It wasn't discolored or painful and felt like it fit about the palm of my hand. We watched it, it stayed pretty much the same in size. His blood markers have continued to be high but not crazy high and we held out hope that the surprise double dose the week of Christmas would knock things into line. We had the PET originally scheduled for earlier in January but when there were some issues with the financial assistance, we asked them to reschedule in hopes we could work through some of the issues. The reschedule wasn't until the end of February and the waiting was making us nervous. Somewhere along the line we noticed a similar bump on his upper thigh which seemed likely to be a lymph node and pleaded for them to push it up. It was moved to this past Thursday.
The experience in October wasn't the best, so we were both relieved to see the friendly nurse, she recognized us. She was amazing to work with, very kind, patient and gentle. He sat alone in the room for an hour with the radioactive sugar flowing through his veins. Don't think or use your brain they say... haha, that's not an easy feat.
The results came in quickly and it didn't take much deciphering for us to know that things weren't good. The masses that were identified in October have grown. The one on his upper abdomen is approx. 4.7x3.7cm and upper thigh/groin 7.6x4.6. There are also additional new ones we weren't aware of as well, some that may be on or near his pancreas and down his right leg. In addition to size they measure this by the amount of uptake of the tracer called SUV (Standard Uptake Value) They are also more active. The original ones when from 7.1 to 16.9. The one on his upper left thigh is 22. The ones in his right thigh/pancreas is 26.4.
His doctor confirmed our suspicions yesterday . It has turned into a rare aggressive form of called extramedullary myeloma (sometimes known as EMD - Extra Medullary Disease). Typical myeloma forms lesions in the bones which weaken the bones. This myeloma is able to exist outside of the bones which makes it difficult to treat. It's not very common and there aren't a lot of studies or treatments specifically for it. Dr Sborov mentioned it's taking on characteristics of lymphoma, which sounds terrifying and complicated. Myeloma is a cancer of plasma cells, while lymphoma is a cancer of lymphocytes. Both plasma cells and lymphocytes are types of white blood cell. Again, we are so very grateful to have a myeloma specialist who knows what that means.
With it being aggressive, we must be aggressive. They quickly got the ball rolling to start a new chemo right away. The plan is for a 5 drug combo called K-DCEP. I solved the mystery of the wacky acronym from the video... drugs always have two names a generic and a brand name. Since keeping track and trying to learn how to pronounce one is always so easy.
It comes with significant risk and it's unknown how Chris will tolerate it. Some people handle it better than others. It can damage your heart, so we go on Monday for testing on his heart, labs to establish a starting point and a Covid test. It can also be difficult on your kidney's. We are super grateful that with the most recent treatment it's really helped his kidneys. In fact, one time his creatinine was in normal range for the first time since diagnosis. Having the weekend to process has been helpful but we are looking forward to knowing more on Monday. If insurance will approve it, it likely will be several days in the hospital.
Dr Sborov mentioned that depending on the results of the first cycle, radiation is a possibility as is the Bone Marrow Transplant.
Yesterday was tough and we both cried off an on throughout the day. My mind was chaotically trying to think of all the things I could/should do to be prepared as well as trying to learn what I could about his treatment and prognosis. I put together the video above that I posted to Facebook (isn't that song perfect... it's called Lion by Saint Mesa). I repacked our hospital bags, packed a smaller cooler full of food, ordered groceries, did laundry, cleaned the house, and tried to make arrangements to be semi-away at work. Today we are running errands and went out to to enjoy the beautifully sunny day. Chris is in good spirits and feeling that the timing is right and things will be ok. His optimistic and peaceful attitude is helping calm my nerves.
Finally, several people have asked how they can help. In the video I mentioned emotional support like cards, texts, messages etc. Others have asked if we need financial help. Money or gift cards to help with gas, food, or medical bills would definitely help alleviate stress. We typically do most of our grocery shopping and get gas at Smith's. Our names have been added to the temple prayer roll and we have arranged for a good friend to come give Chris a blessing tomorrow. Prayers have also been a huge lifeline for us, praying specifically for Dr. Sborov to be able to guide us to the right decisions would be one request.
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