I'm reading some really great things about this drug! I've already written about Adcetris on my family blog and how it is engineered specifically for Hodgkin's Lymphoma patients who have already failed chemo treatment AND an autologous stem cell transplant (from self). Fitting my situation perfectly! The average person taking the drug who has refractory Hodgkin's Lymphoma has done 9 treatments (each 1/2 hour long, 3 weeks apart). Peripheral neuropathy (numbness in hands and feet) seems to be the most annoying side-effect and the main reason why treatments are stopped, because patients can reach the point where the neuropathy can prevent use of the hands and might not completely reverse itself (though it usually does over time).
I was surprised to find the cost of EACH dose of Adcetris is over $13,000!! Multiplied by average of 9 treatments... over $100,000 drug! Crazy. What a wonderful thing it is to have insurance!! On top of this treatment I'm up for an allogenic bone marrow transplant which can run $150,000-$200,000. I'm astonished at the insanely high cost of all this medical stuff.
The biggest potential downfall of Adcetris is its ability to reactivate a virus that up to 59% of the general population is thought to carry (at least according to Wikipedia, for what that's worth), PML- a brain deteriorating virus. Wow! I have been tested for the antibodies that would suggest I am a carrier of the virus and will find out the results of that test next week. From what I've read there have been two deaths from this virus being reactivated so there is a warning on the drug now but I also think it's not a huge threat. My mom was taking Tysabri for Multiple Sclerosis and it carries the same warning on it. As far as I know she is not having her brain eaten from taking the drug! :)
I had a tough time finding personal accounts of this drug as it was approved so recently and the trials were quite small. I am making this post not only for friends and family to read up on other personal accounts of the drug if they want, but also to help others in their search for reviews of Adcetris because it was difficult for me find.
(some of the comments at the end of this post are interesting reads)
I hope these cancer fighters are okay with me sharing a link to their blogs (I didn't ask first...). I love that these people are documenting their fight- I think we could all benefit from reading each other's stories!
You are absolutely right, Tessa, we all benefit from reading each others stories. I don't mind sharing one bit :). Thanks for this great post about BV - very helpful!
ReplyDeleteThank You for this! I just started Adcetris, and I was very nervous and still am. I was really trying to find people who are doing it as well. This blog brings me comfort. I am 22 and I have only done one dose so far. The only side effect I am having is these random sweats and an upset tummy. What kinds of things are you experiencing and how many doses have you had so far??
ReplyDelete-Leta Tingle
East Lansing, Michigan
Hi Leta- good luck with your treatment with Adcetris. I have had most of the usual side effects with Adcetris after having 3 cycles of it (read more recent posts if you want) but just found out it's not working for me. I will be switching to an old fashioned crappy chemo regimen on Sunday. I really suggest reading Melissa's blog that I recommended above, Holding Onto Hope. She was in remission after 3 doses of Adcetris and is still going strong on it. There is also this site, http://forums.lymphoma.com/ and I guess it's great for a lot of people, but it's not my style of support. I get depressed reading on the forums but you can find anyone going through the same thing you are. Thanks for reading, good luck!
DeleteHi :) I am in remission after 6 cycles...I have had minimal side effects, just tired and a bit achey really. No hair loss - yay! For me it has been a wonder drug - I had ESHAP last year with no response, so this has pretty much given me my life back, with hope of a transplant soon. It's a crazy journey, we just have to strap in and hold tight. Massive love, Sim xxxxxx
ReplyDeleteHi Leta, and thanks for starting this blog. I found you after typing "Brentuximab blogs" out of frustration. Were there any stories on the web about real people and their experience with Brentuximab? Like Tessa I find the lymphoma forums disappointing, even frustrating. Advice giving isn't always a good thing because each person's lymphoma is so different, and responses to treatment, family issues, and psychological impact vary so much that it is hard to know what to think. It is confusing. Even exhausting. You are doing a great job for "our" little tribe, because it is all so new.
ReplyDeleteI will keep reading. Brentuximab was approved for me under a special peer reviewed appeal made by two oncologists who have been on my case. Brentuximab was approved for 3 different types of lymphoma patients: 1) HL refractory after high dose combination therapy and a failed autogenetic transplant; 2) HL refractory after 2 different types of high dose combination therapy; and 3) patients with refractory angioblastic T cell lymphoma who had not responded to conventional therapies. These cancers all have a common demoniminator: they "express" a protein called CD 30 which Brentuximab targets and kills. I fell between the cracks on this. I had 2 kind of high dose combination therapy, the first regimen following HL. But on relapse, HL had recurred and the T cell lymphoma had appeared for the first time in the tumor biopsy. Hence, what to do? The manufacturer SeaGen agreed I could be a recipient. My insurance company also agreed to pay in full for 16 shots over one year.
So I am also excited, but feeling really isolated. My first treatement was 5 days ago. I received it by IV along with Benadryl and Dekatron infusions. It took about 3 hours. Probably because they are more careful the first time around and want to monitor allergies.
So far, I have experienced nothing more than a scratchy throat and 2 days of diarrhea. There is some peripheral neuropathy, but it is a leftover from the ABVD and ICE regimens. Very slight. Something tells me the sore throat and diarrhea may have been a summer virus. That PML infection is definitely something I need to research more and discuss with the doctor. I did not know there was an antibody test for that.
Well thanks to everyone for being here because feeling a connection is really important, for me anyway. Cheers and only soothing thoughts to all. :) Narayanjot
Tessa, Good luck! I know just what you mean about "crappy" chemo. Let's pray that in the coming months something really perfect for you comes true.
ReplyDeleteBest wishes to all. I had Leukemia when I was 13 back in 1981 and had chemo and radiation for 3 years. I am alive and well. Everybody stay positive and Hang in there! Keep your prayers strong!
ReplyDeleteHow did you all who took Brentuximab come out? My husband has had 9 treatments but stopped because of the neurapothy - hoping maybe he sees some improvement with that and can take a few more treatments. His dr who we are frustrated with basically told us after the 9 treatments Brentuximab is not meant to be a cure but I had read where one young man was cured after taking it.
ReplyDeleteVickie- I only had the three treatments back in 2012. They did fail for me with one mass growing over the treatments and I experienced neuropathy that is only now disappearing. From all the research I did and questions I asked my docs (supposedly the top lymphoma docs in the US), I learned that Brentuximab is truly not meant to be a cure. HOWEVER, the drug is so early in its use that it does seem to have "cured" a few lucky recipients. Please keep in mind though, I was "cured" when I was 16 with traditional chemo and radiation only to find the cancer back when I was 28. Cancer is obviously very unpredictable, with each person's body responding so differently for treatment- I guess my advice would be to listen to your doctor, get a second opinion, and always choose to do what YOU deem best, come what may. Thanks for reading, and best to you and your husband in your journey.
DeleteHi Tessa! I'm from the Philippines and just had my second session with Adcetris. I was diagnosed with cutaneous t-cell (CD-30+) lymphoma, and CHOP failed for me. I'm wondering if you have any updates on your condition as I seem to be the first for both my oncologist and my hematologist to use the drug, and they have no bases for comparison. Would appreciate your input very much! Be well! Regards. Grace
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