I have a question that I was wondering if anyone could shed some light on. My darling mum is currently being treated for her 2nd recurrence (so third time in total she "gets" cancer) for her ovarian carcinosarcoma, which keeps returning on the peritoneum. She's being treated in Egypt and we've just received the great news that she's responding and the ca125 is decreasing + tumour is shrinking. She still needs to take a few more sessions, but during her last chemotherapy session, she had a severe reaction to the carboplatin and they had to stop it.
We've spoken to the oncologist and he thinks, and I agree, that the clinic might be importing a "dodgy" - for lack of a better word - cheaper version of the drug which might have resulted in her reaction. Unfortunately this tends to be the way things are done in Egypt, always trying to cut costs regardless of the consequences (even though she's being treated privately and not on the national health system), which is why I'm willing to believe him. Or perhaps I'm just clutching at straws because I want her to be able to keep taking the carboplatin seeing as she responds so well to it. Either way, we thought we'd try and see if we can source the carboplatin ourselves from here in the UK and take it to her to Egypt, and see if she reacts any differently.
Does anyone know if this will be possible? I think it goes without saying that we'd need a prescription, but I suppose my question is, is it possible for us to use a prescription from a doctor from Egypt here in the UK? And if not, could I go to an oncologist here in the UK on her behalf with all her medical information and get a prescription from him, but not have her present? And is it even possible to buy something like carboplatin as an individual as opposed to a clinic or hospital? And will they allow us to cross the border with it, or is there some sort of legislation that forbids this?
I know it's an expensive drug and that's fine with us. We're hoping insurance will be able to cover it but even if not, my family and I will spend every last penny we have to get her better, without question or doubt.
I'm sorry, I know that's a lot of questions, and I know it's unlikely that someone will know all the answers given this is an odd situation - but any insight at all would be very much appreciated.
I've included a picture of her being the ultimate warrior at the first session after we found out it was back again, in the hope that it inspires the same feelings of hope and positivity in everyone here as it does me. She is my hero.
Thank you so very much to you all.
XX
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Mayski
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Hi Mayski. Having had a severe reaction (stage 3 anaphalatic shock) to carboplatin myself during a second recurrence I'd be very wary of even attempting to try it again - in fact I've been told under no circumstances can I have it again and that it is not unusual for ladies to become allergic to it. I was subsequently moved to Cisplatin which is harsher but as effective. What treatment is your mum having at the moment? xx Kathy xx
Hi Kathy - yep, she's now on cisplatin but, as you say, it's much harsher and she's really struggling with the side effects. She said if that's what it comes down to, she can't continue to take it.
I tend to adopt a very angry attitude with her every time she mentions stopping treatment, which I know is wrong, but I can't bear to think about it - especially because she responds so well to the therapy, I feel like now just isn't the time for us to be considering this. Hence why we want to try again with the carboplatin.
I completely hear you about ladies becoming allergic to it and not to try it again. That was also what we were told to begin with. She did have one reaction to it during the first round of treatments, but we've used it since for the second and third rounds of treatment and it was all fine until this very last session.
Argh. It's so difficult. Do you think we're being too reckless and harsh?
Hi Mayski I feel for your mum, I really do, because Cisplatin is harsher but if you can get the anti-sickness meds right then it is doable. I can understand her saying she doesn't want to continue, I didn't want to either but I forced myself. I had it since midway through my first recurrence and for the whole of my second. Obviously it's only my opinion but I nearly died during the reaction I had to carboplatin and it took 14 shots of adrenaline and a team of people working on me for an hour for me to regain consciousness, not something I would wish to repeat or watch anyone else to go through, even one of my chemo nurses was shaken by my reaction and said later that she hadn't slept that night! I am not trying to scaremonger but I do think you need to advice from your mum's medics. Kathy xx
Hi Kathy. Goodness, how horrible. I'm so sorry you had to go through that and I'm not surprised one bit that you'd caution against it. Thankfully, her reaction wasn't as bad but that doesn't mean it definitely won't get worse. I really appreciate the advice so thank you, I will relay this to her oncologist and see what he reckons.
On the anti-sickness meds, I don't actually know what they're giving her, but are there any specific meds that you've used that you'd recommend? Perhaps if I buy those instead from the UK, that might be a safer and more reliable alternative?
Hi Mayar, I was on cyclizine which worked well for me. Maybe if you are looking into alternatives you should follow the advice Anna has given. I do hope you find what works for your mum. Wishing you both the very best. Kathy xx
Hi, when I had cisplatin it was tough but the doctor prescribed aprepitant for sickness for a couple of days then ondansetron and metachlopromide as needed, 5 days of steroids, reducing for the last 2 days. The worst I felt then was a the day after stopping the steroids, but that was just a horrible shaky feeling. The best treatment for that was one of my lovely daughters holding my hand ! Free and irreplaceable. I expect your mum finds that helps too, cos your love for her shows through your words.
You may also find it helpful to contact the Consulate General of the Arab Republic of Egypt regarding any specific questions on Egyptian regulations.
You will need oncologist advice regarding this specific to your mum as well. I hope this is useful, do get in touch if there's anything else we can help with.
I'd like to thank you, Anna, for this advice for Mayski. It brings tears to my eyes that a UK charity can be so helpful. I sometimes think of women who may not be fortunate enough to live in the 6th biggest economy and get the level of health care we do, for free. And so much support from this forum, Ovacome as a whole, and our hospices.
She does look a 'darling' and so brave. I found it much harder starting second line and I don't think I'd have managed to look so cheerful at the first session for recurrence. It did work for me for then first recurrence. I can't have carboplatin any more as I reacted twice, in a UK hospital. But they changed me to cisplatin and there's also oxyplatin. They told me the platinum drugs work in a similar way and have different 'carriers' ie what they mix them into for infusion, and I may have developed an allergy to that, not the platinum drug itself.
Thank you Lesley - that's good to know as I'm not actually sure what it is exactly that she had a reaction to. And thank you so much for your kind comments about her. I can't begin to visualise how horrible it is and how brave you both are. Wishing you all the best. Xx
My wife had a reaction to it when she was having 3rd line (Gem/Carbo) and it had to be stopped, however another Onc said that this was a reasonably frequent problem with those that had Carbo previously and suggested that she had it slower....ie over a longer period of time. I cannot remember the exact time details but say for example if normally she would have it over 2 hours then they doubled it. Thankfully that did the trick and she never experienced an issue with it again. I appreciate everyone is different but perhaps you could suggest this for next time whilst you are investigating an alternative. Good luck.
Thank you so much. It's definitely not something they've considered as far as I'm aware so I'll certainly put it to her oncologist, it may well be the solution we need. All my best wishes to you and your wife. Xx
Like Katmal, I think your mum had a similar experience to many of us with carboplatin, and I'd not, in the first instance, consider it was primarily down to dodgy drugs.
Apparently the classic time to start reacting is ( if memory serves) cycle 2-4 of second line carboplatin. I was a classic case. I didn't get to the same stage as Katmal and didn't have the sixth dose.
Since then I have had two further lines of chemo involving Carboplatin. but on a desensitisation regime ( basically it's given much more slowly and with a lot more other drugs). Perhaps this would be something to discuss with your mum's doctors?
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