Journal entry by Rachel Brown —
Insurance approval is in, and I will start chemo on Thursday morning. It has seemed like such a long process to get to this point, and I'm so ready to start. I know I'll likely be pretty miserable for a bit, but I'm ready to do this.
I said in a previous update that I would talk more specifically about the chemo drugs I'll be getting. If that sounds excruciatingly dull, know that you can skip it without missing anything. The update that I have insurance approval is the only major update in this post. If you're interested in the specifics, read on.
(Disclaimer: I am so not an expert at any of this. I'm passing along what I know, to the best of my understanding.)
Since the 1970s, Hodgkins has been treated with a combination of 4 meds, doxorubicin (Adriamycin,) bleomycin (Blenoxane,) vinblastine (Velban, Velsar,) and dacarbazine (DTIC-Dome.) This regimen is known as ABVD, and it has been the standard treatment for decades. Researchers are always looking for better, safer meds, though. In the ABVD regimen, the "B" med, bleomycin, is one they especially don't like to use if they don't have to. If I understood my oncologist correctly, he said that they really only use it in Hodgkins and testicular cancer these days. All chemo drugs are hard on the body, but bleomycin can cause lung toxicity that's potentially really dangerous or even fatal. Anyway, they use bleomycin as little as they have to, and Dr W said that if the PET scan they do after the second cycle shows good response, they sometimes drop the bleomycin for the rest of the cycles.
A study was published a couple years ago that showed positive results in dropping bleomycin and using brentuximab instead for stage 3 and 4 patients. This is called AAVD or A+AVD. Brentuximab had actually previously been used as a second-line treatment, meaning that if a person didn't go into remission with the first-line treatment, one of the options from there was to use brentuximab. This study showed that using it instead of bleomycin actually resulted in 5% better outcome, and it takes out the lung toxicity risk that comes with bleomycin. There are other side effects that come along with it, and we'll get into those below. It is likely overall safer in the long term, though, while even being slightly more effective. The only downside is the fact that there has only been a two-year follow-up at this point. A five-year follow-up should come at the end of this year, and it's expected to show positive results.
Dr W, my oncologist, actually laid out the two options and gave me a choice. He had taken my case to the tumor board to discuss with other experts (because my cancer is presenting kind of weirdly in a few ways) and had multiple discussions with the head of oncology about which direction to go. They kicked it around for a while, but ultimately, both of them said they'd go with the brentuximab. (I think they both believe in it as the overall better choice, but also for my case specifically. My lungs are already a little weird -- I have the pleural fluid, mild reduced capacity, mild reduced diffusing capacity, and mild scarring.) I told him that I trust the decision that he and Dr P believe is best, but he actually insisted that I take a couple days to decide and then we'd touch base. I did some research, and I went to my best resource... my little brother who happens to be a doctor. He reached out to some friends who are oncologists, and both of them agreed with this plan. One of his oncology friends uses it regularly, says he considers it the go-to over ABVD, and thinks that's what everyone will be doing soon. The other said it's practically a coin toss, but that he'd go with the AAVD. So while several of the doctors thought it was a close decision, all of them ultimately made the same call.
If it seems worrisome to you that I'm using a newer med and regimen, know that it is not experimental; at this point it is considered a standard treatment. It is a lot more expensive because there isn't a generic for it, and yet my insurance company took only one day to approve it. Insurance companies aren't exactly known for paying more than they need to, and if they had any concerns about this regimen, I think they would have happily insisted that I use the old regimen.
Okay, so what can I expect from chemo? Well, for starters, the usuals... nausea, fatigue, the possibility of losing my hair. There are a couple of things that come with brentuximab specifically. There's a higher chance of neuropathy -- tingling, numbness, pain, or weakness in my fingers and toes. Around 2/3 of people experience this, but it usually resolves after treatment is done. The most serious complication is neutropenia, or low white blood cell counts. This is listed as happening in 58% of people, but keep in mind that it's not dangerous in most cases. It is, however, the thing that has the potential to be life-threatening, so we'll watch it carefully. (As in interesting aside... In the big study, there were some deaths on both sides. 11 of the 13 deaths in the AVBD group were related to lung toxicity. 7 of the 9 deaths in the AAVD group were related to neutropenia.) I will learn more tomorrow when I meet with the pharmacist to discuss my meds, but I did read that there's a med that can be given along with AAVD that stimulates production of neutrophils, and that it helps a lot. I'll ask tomorrow if that will be part of my regimen. Either way, we know that my immune system will take a serious hit, which is expected with chemo. We'll be careful and keep me as protected as possible.
If you're still with me after all of this, and have it in you to read yet more information, there's a really good page here. It gives more in-depth information about AAVD, how it's given, the long list of side effects and how common they are, etc. It also gives information about each of the four meds individually. There are even videos about some of the most common side effects.
Thanks again for being along on this ride. It's not something I would have chosen if I'd had a choice, but it sure does make all the difference in the world that I have such amazing family and friends.
I said in a previous update that I would talk more specifically about the chemo drugs I'll be getting. If that sounds excruciatingly dull, know that you can skip it without missing anything. The update that I have insurance approval is the only major update in this post. If you're interested in the specifics, read on.
(Disclaimer: I am so not an expert at any of this. I'm passing along what I know, to the best of my understanding.)
Since the 1970s, Hodgkins has been treated with a combination of 4 meds, doxorubicin (Adriamycin,) bleomycin (Blenoxane,) vinblastine (Velban, Velsar,) and dacarbazine (DTIC-Dome.) This regimen is known as ABVD, and it has been the standard treatment for decades. Researchers are always looking for better, safer meds, though. In the ABVD regimen, the "B" med, bleomycin, is one they especially don't like to use if they don't have to. If I understood my oncologist correctly, he said that they really only use it in Hodgkins and testicular cancer these days. All chemo drugs are hard on the body, but bleomycin can cause lung toxicity that's potentially really dangerous or even fatal. Anyway, they use bleomycin as little as they have to, and Dr W said that if the PET scan they do after the second cycle shows good response, they sometimes drop the bleomycin for the rest of the cycles.
A study was published a couple years ago that showed positive results in dropping bleomycin and using brentuximab instead for stage 3 and 4 patients. This is called AAVD or A+AVD. Brentuximab had actually previously been used as a second-line treatment, meaning that if a person didn't go into remission with the first-line treatment, one of the options from there was to use brentuximab. This study showed that using it instead of bleomycin actually resulted in 5% better outcome, and it takes out the lung toxicity risk that comes with bleomycin. There are other side effects that come along with it, and we'll get into those below. It is likely overall safer in the long term, though, while even being slightly more effective. The only downside is the fact that there has only been a two-year follow-up at this point. A five-year follow-up should come at the end of this year, and it's expected to show positive results.
Dr W, my oncologist, actually laid out the two options and gave me a choice. He had taken my case to the tumor board to discuss with other experts (because my cancer is presenting kind of weirdly in a few ways) and had multiple discussions with the head of oncology about which direction to go. They kicked it around for a while, but ultimately, both of them said they'd go with the brentuximab. (I think they both believe in it as the overall better choice, but also for my case specifically. My lungs are already a little weird -- I have the pleural fluid, mild reduced capacity, mild reduced diffusing capacity, and mild scarring.) I told him that I trust the decision that he and Dr P believe is best, but he actually insisted that I take a couple days to decide and then we'd touch base. I did some research, and I went to my best resource... my little brother who happens to be a doctor. He reached out to some friends who are oncologists, and both of them agreed with this plan. One of his oncology friends uses it regularly, says he considers it the go-to over ABVD, and thinks that's what everyone will be doing soon. The other said it's practically a coin toss, but that he'd go with the AAVD. So while several of the doctors thought it was a close decision, all of them ultimately made the same call.
If it seems worrisome to you that I'm using a newer med and regimen, know that it is not experimental; at this point it is considered a standard treatment. It is a lot more expensive because there isn't a generic for it, and yet my insurance company took only one day to approve it. Insurance companies aren't exactly known for paying more than they need to, and if they had any concerns about this regimen, I think they would have happily insisted that I use the old regimen.
Okay, so what can I expect from chemo? Well, for starters, the usuals... nausea, fatigue, the possibility of losing my hair. There are a couple of things that come with brentuximab specifically. There's a higher chance of neuropathy -- tingling, numbness, pain, or weakness in my fingers and toes. Around 2/3 of people experience this, but it usually resolves after treatment is done. The most serious complication is neutropenia, or low white blood cell counts. This is listed as happening in 58% of people, but keep in mind that it's not dangerous in most cases. It is, however, the thing that has the potential to be life-threatening, so we'll watch it carefully. (As in interesting aside... In the big study, there were some deaths on both sides. 11 of the 13 deaths in the AVBD group were related to lung toxicity. 7 of the 9 deaths in the AAVD group were related to neutropenia.) I will learn more tomorrow when I meet with the pharmacist to discuss my meds, but I did read that there's a med that can be given along with AAVD that stimulates production of neutrophils, and that it helps a lot. I'll ask tomorrow if that will be part of my regimen. Either way, we know that my immune system will take a serious hit, which is expected with chemo. We'll be careful and keep me as protected as possible.
If you're still with me after all of this, and have it in you to read yet more information, there's a really good page here. It gives more in-depth information about AAVD, how it's given, the long list of side effects and how common they are, etc. It also gives information about each of the four meds individually. There are even videos about some of the most common side effects.
Thanks again for being along on this ride. It's not something I would have chosen if I'd had a choice, but it sure does make all the difference in the world that I have such amazing family and friends.
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