Hello my lovelies!
I am feeling much better than I did when I last posted. This picture is me with my brother, David, and my dad, Mike. You may notice than I’m a bit thinner. I’ve lost about 60 pounds since May, mostly due to all the puking from the Brentuximab. Thankfully, that drug is finally out of my system and my weight has plateaued. I don’t need to gain any back, since I had gained a ton from all the steroids and fluids, so I think I’ll stay where I’m at now. Thankfully, no more vomiting! It’s hard to believe now that I went through that every day for 20 weeks. Whew. And, even better news…no more vomiting means no more AVM’s in my stomach, no more bleeding, and no more hospital visits! My numbers are much better and I haven’t needed a blood transfusion since July.
My insurance company didn’t approve payment for Opdivo treatments since it’s not approved by the FDA yet for use with Hodgkin’s lymphoma, so we applied with the drug company, Bristol Myers-Squibb, for their drug replacement program. Basically that means that the drug company gives me the Opdivo for free and I’m only financially responsible for the clinic costs of infusing the drug. We were approved for this, so we moved forward with treatment right away instead of wasting time appealing with the insurance company. My masses were growing daily and starting to spread again, so there was no time to waste.
I’ve now had three infusions of Opdivo, which I get every two weeks. My masses have noticeably gone down, and I have a PET scan scheduled for next week to check my progress. Once we get the PET report, then we will have a better idea of when we’ll be able to move forward with my next transplant. This transplant would involve an outside donor (which we’ve already found) and would hopefully prevent the lymphoma from returning. But we have to get the masses down to a manageable size before we’re able to do the transplant. Radiation therapy is still on the backburner as another possible way to shrink the masses, but hopefully this drug will work and radiation won’t be necessary. There have been some small studies with Opdivo and Hodgkin’s, and they show promising results, so we have high hopes for my Opdivo results. So far the main side effect I’ve had is extreme fatigue, with lots of sleeping. But I can handle that if the drug is working. I think it is, since I no longer look like I’ve had a bad boob job on the left side. Seriously, I looked like I had a third boob above my left one. Now they just look uneven, so that’s big progress.
I was also hoping my neuropathy would improve once I got off the Brentuximab, but that hasn’t been the case. I was warned beforehand that any nerve damage from the drug would most likely be permanent, so I’m not surprised. I also have neuropathy in my feet and legs, which makes me look a bit like a Weeble Wobble when I walk, but I’m managing. I’m hoping that the more I stretch and use my hands and feet, the better I’ll be able to manage the neuropathy. I’d rather deal with it this way than take any more pills. I’ve had Neurontin before, which is what is usually prescribed for neuropathy, and that shit sucks. Seriously. I hated being on Neurontin (tried it for a few months before I had a diagnosis, when my dermatologist thought my itching was neuropathic). That stuff seriously messed me up. So as long as I’m not in excruciating pain from the neuropathy, I will deal with it. And yes, I’ve had this discussion with my doctor. She knows I am terrible at taking meds I don’t want to be on, and agrees that the less I’m on, the better. I am still taking a few things for my stomach and anemia, but they don’t have any side effects, so I don’t mind them.
My hair has been very slow to come in, but I finally have fuzz all over my head instead of in patches. I also have some tiny little eyelashes and may even need to tweeze my eyebrows soon! I had almost given up on growing my hair back before my next transplant, but I just might achieve a cute pixie ‘do for a few weeks before it falls out again.
I just want to say thank you to all of you for loving me, supporting me, praying for me, and reaching out to me. I have the best village. You all continue to take such wonderful care of me and my family, and we appreciate it more than we can express. Love you guys!