I'm headed to the Chemo Lab soon for my 3rd Velcade shot. So far, so good THIS TIME! Some Neuropathy, but nothing crazy like the "Frankenstein affect" I had from Melphalan back in July 2010, as prep for my Stem Cell Transplant.
My first Velcade shot this time around, I had a little swelling and redness at the injection site, the 2nd shot, the same. This is NOTHING at all like my brief experience back in February, March 2017 when paired with Darzalex! So far Velcade is my friend, as I am not experiencing outrageous side effects. And if you've followed my blog for a while, or know me personally, you know my philosophy of "Less is More"... as yes, I asked my Dr to start me off LOW dose this time, and build from there if necessary. See, my system is just so stikin sensitive to everything, then it adjusts, and shabam! Me and chemicals do fine :))
Back in 2017, we had originally tried the Darzalex, Velcade, Dex triplet combo, but then I wound up with CRAZY, on fire skin and nerve pain. It was like having a skin fever, without the actual fever, and cats scratching my skin and nerves 24 7. Was just awful. Whether it was the first several Darza infusions, or the Velcade itself, or the combo of the 2 fighting each other, I don't know, but I DITCHED that FAST as it was so painful and so intense. Here's what happened back then! https://juliesmyelomamoments.blogspot.com/2017/03/ . That's when we switched to Pomalyst, and the rest is history from March 2017 to September 2018. I'm proud that my body was strong enough to utilize the powers of Darza and Pom for so long, but this seems to be my trend of doing ok for a year plus, before becoming Refractory to each treatment cocktail.
TO BE CONTINUED.... :))
I'll post my current Labs when I return, and update you about my crazy BONE PAIN situation, and upcoming Radiation appointment...
Hi Julie . It's Karen from NY.. thinking of you..hope velcade and radiation helps.. my husband started darzalex and 25 of Revlimid. He just had his first week off. its very difficult.. as you certainly know. ...My daughter is doing the MMRF run in NYC next weekend.. she'll be running for you and all the others... raising money for more research.. please continue to stay strong and always remember how much your blogs have continued to help others. In my prayersReplyDelete
Hi Karen, thanks so much for checking in and updating me :)) Ugh, 25mg Rev has got to be tough! I never got beyond 15mg and Rev always caused me awful lower GI drama! I have some funny almost didn't make it to the pottie posts about all that. Hoping your hubby does ok on Darza! I did great from March 2017 to end of Sept 2018. What are his side effects? As I think back, they changed over time, and were less severe as the months passed.Delete
Thank you so much Karen for letting me know my posts make a difference out there in Myelomaville :))
And let me know your daughter's name or team, and I am happy to donate!
Thank you again for your friendship and support Karen! xoxo
Oh Julie that is so sweet..very nice of you .we're truly grateful for the newly approved treatments and research. Allison O'Brien Silva.is my marathon running daughter participating in the race. my other daughter Lauren and myself will be there to cheer her on..one of our doctors at Mt Sinai will be honored at the NYC race.. Jimmy is doing ok.with the darazel ..gotta check my spelling.. first three infusions were in the hospital..very scary. .. staff took it very seriously..he finally made it to every other week. the Dex and Rev causes problems.. agitation.. not sleeping..GI issues..we really don't do anything..have not seen grandchildren. Occasionally Jimmy will go to a matinee movie with our neighbor.He just saw the Neil Armstrong movie and loved it..usually not crowded..as you know life revolves around treatments..blood work.. especially the ever popular White Blood cell count..and side effects. But we continue to be thankful for what we have.. and remember you're always in our prayers..Delete
Hi Karen, I found Allison on the MMRF 5k run. Wow! Go her, top fundraiser :)) So awesome she is doing this for her Dad!Delete
So sorry for all Jimmy's side effects with Darza Rev Dex. I had a minor reax the first infusion, they stopped it, gave me more Benadryl, waited for about 40min then continued on. I lasted from March 2017 to end of Sept 2018 on Darza Pom Dex. It was quite tolerable for me, but I'm a rare one that doesn't mind the super high of Dex, and then the crash. It's yucky, but after almost 9 years, I've learned how to deal with it and expect it. This triplet really "corked" me up, but I'll take that over the "volcanic" lower GI from Revlimid :))
Glad Jimmy gets out and about periodically, it gives us a sense of normalcy for sure. And yes, our immune systems are so compromised, the "well" person just doesn't get it :((
Enjoy the 5k tomorrow, and I'll be cheering you all on in spirit xoxo