GramaA Posted May 3, 2021 Posted May 3, 2021 Has anyone gone through Carboplatin desensitization? Can you explain your experience? I had a severe allergic reaction and this is what my oncologist is suggesting. It doesn’t seem too common, which worries me. Thanks so much, A~
Tom Galli Posted May 4, 2021 Posted May 4, 2021 GramaA, I’ve not had an adverse reaction to carboplatin so I can’t offer advice on desensitization. But I’ve had 18 infusions of Carboplatin over three years in 2004, 2005 & 2006 and have no adverse effects from the chemo. I read about desensitization and it seems to be a straightforward process. I’m wondering, however if a substitute to carboplatin would be an easier path. Ask your doctor about that. Welcome here by the way! Stay the course. Tom
Jesse L. Posted May 6, 2021 Posted May 6, 2021 I too had to read up about what Carboplatin desensitization is...I had never heard about it before, but I guess there is always something else to learn. In any case, I do remember my first infusion on 4/5 and how closely they watched me every second that Carboplatin was being put into me. It was kind of unsettling in that the nurse sat not four feet from me and I swear she never blinked once during the entire 30 minute infusion. When I asked her why she was staying so close and eerily staring at me, she told me that some folks react badly (allergic?) to Carboplatin. Well, other than the expected later side effects, nothing happened. Apparently in your case, something did happen. According to what I read about desensitization, the same Carboplatin is infused into you, but it is done over a number of consecutive days instead. Now, Tom above did state that you may ask for an alternative to Carboplatin, but I doubt whether your oncologist will do that. At least not without trying alternative infusion techniques first. But then who knows... I'm not a medical professional. If anything I wouldn't worry too much about it. Given that "desensitization" exists means thst others have needed the special care that you will get. In other words they'll figure it out for you to get the same chemotherapy effects you would have gotten otherwise. Other than that I hope everything is going well for you...stay in touch and let us know how it works out. 😆
GramaA Posted May 6, 2021 Author Posted May 6, 2021 @Tom Galli and @Jesse L. Thanks for both of your replies. After researching and a dr appt., he said the allergic reaction to Carbo is ‘uncommon’. About 30% of people may react after 6-8 treatments. I was on my 6th treatment. He also said he could switch to Cisplatin, but it wouldn’t be as effective as the Carboplatin, in my case. So we’re going with desensitization. I’ll get my first 2 drugs at the cancer clinic, transport to the hospital where I’ll be in a private room with my own nurse. Over a 6-hr period, and 12 steps, they’ll introduce the Carboplatin thru IV in graduating steps. The nurse will be with me constantly watching for a reaction. In one study, 2004(!) (I can’t find a whole lot later but will keep looking), 10 patients were studied. Seven passed with flying colors. One quit due to anxiety. One finished but had one hive. One had a reaction and had to stop treatment. Altho I’m still nervous about it, I guess it’s my only alternative. Benadryl will be given before starting and then readily available if needed. I do this on Monday, May 17th. Would love, love, love some prayers! Visitors are still not allowed in hospitals by me, so I can’t have anyone with me. This is also causing anxiety. I have to just accept it. Hope you’re both well! Keeping you in my prayers. 😘🙏🏻😘
Jesse L. Posted May 6, 2021 Posted May 6, 2021 There you go... Now mind you, I kind of thought that's what would happen. You'll still get the Carboplatin, but it will be under intense care. FWIW, they were originally going to give me Cisplatin, but due to the increased side effects (otoxicity-quite possible loss of hearing), they changed it from Cisplatin to Carboplatin before my infusions were to start. When I looked up the difference between Cisplatin and Carboplatin, the information I got was that Cisplatin had a few more possible stronger side effects, but was about one to two percent more effective than Carboplatin. However, Carboplatin is so close in its effectiveness, that nowadays it is usually the go to drug for platinum therapies. If I were you I still wouldn't be just to worried about it...you'll just have to get used to a nurse staring at you like a hawk and monitoring everything about you while you get the now longer infusion. In a way it's kind of creepy, but on the other hand it is the best of care. And something you just have to do... Is it really any different than all of this combined? Not really...just another minor inconvenience is all. Take it easy and please relax...you'll be fine. There will be far too many eyeballs on you (👀, 👀, 👀) for there to be any other outcome... Stay in touch...
GramaA Posted June 29, 2021 Author Posted June 29, 2021 Sorry folks….I’m way overdue in updating. Desensitization went OK but with 2 hiccups. Nurse had to pause twice to give me additional Benadryl and Ativan due to reddening of my skin. No breathing problems, thank God. I was able to complete the desensitization but it was extended from 6 hours to 10. I went home from the hospital the next day. My next chemo treatment, 3 weeks later, was a disaster! 9 hours, 2 pauses, more Benadryl/Ativan. I closed the clinic down! Last patient. Next oncologist visit, he decided enough was enough. He changed my drugs to Taxotere, only. (Insurance won’t pay for Keytruda!) Had my first Taxotere session yesterday and it went without a hitch! Praying side effects are minimal. But I’m aware of the hair loss…therefore, will shave my own head next week. Love to all! Hope everyone is doing OK. Jesse…think of you often. Life has been a mess lately, plus grand daughter is visiting from GA for the summer. Busy, busy, busy. I apologize for not writing sooner. A~ xoxoxo EDIT: I did do 5 rounds of radiation to try and shrink a tumor blocking an airway causing shortness of breath due to partially collapsed lung…also causing pleurisy-like pain. Was hospitalized 4 days due to pain. Weaning off of Percocet now. Will probably stay on Gabapentin. Pain may also include nerve damage due to thoracotomy back in 2018.
Tom Galli Posted June 29, 2021 Posted June 29, 2021 Grama, Oh my, now the shoe drops: a desensitization nightmare and adverse radiation reaction plus chronic pain! I can't understand why your insurance won't cover Keytruda. Is the insurance company providing a reason? Is your doctor fighting that determination. Do you have immunotherapy markers projecting a good response for immunotherapy? I know, with me it is always questions--this the engineer in me.... Anyway, good to hear from you. Stay the course. Tom
GramaA Posted June 29, 2021 Author Posted June 29, 2021 Hi Tom, Not sure yet why my insurance won’t cover Keytruda. The PA said something about “because it can’t be combine with Taxotere.” I’m waiting for a call from the dr to get the whole story. He’s trying to get me on a list where I won’t have to pay…not sure who is, tho. 😳 My markers were only >5. Maybe that’s why. I hope I remember to follow up and update y’all! I’m not too good at that. Will try harder! Hugs!!!
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