Went in today. Had pre meds night before and some before the desensitisation. Was done over four bags. First two bags were ok. They contained 8 and 9 gms/ mgs ( not sure which) then third bag was 80 gms/ mgs. I started to go very red all over and was itchy. Eyes felt swollen. My chest felt tight. They stopped it and flushed me through. Consultant came to see me and said it was a pity that I reacted. I felt the same.
The fourth bag would have been the big dose 700 gms/ mgs. I would certainly have been very ill if I had that.
I’m
To carry on with my three more taxol but no more carboplatin for me.
Not sure what will happen third line.
Hope all you ladies are doing good k. Hugs. Xxxx
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Suzanne333
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hmmmm odd that because it got me through twice and my mum had it years ago before carbo was available and never had a recurrence. Are you considering a second opinion?
Suzanne, I had both carboplatin and cisplatin. The cisplatin was administered abdominally. I believe it saved my life. Now 16 months NED. Please get a second opinion if you can.
Suzanne. Really sorry it failed but at least you gave it a go. Half my second line was cisplatin following an adverse reaction to carbo and it has served me well so keep,pushing for it. Love Jo 🌻🌹🌼🌺🌸
I will push for it. My consultant and the doctor I saw today don’t seem to think it works. Lots of ladies say it does and they know what they’re talking about. I’ll push for it. Xxx
I met a woman today who has ovarian cancer for s vrnnyears. Her CA125 on diagnosis was 37,000. She wasn’t given much hope. After second line she went into remission for 5 years. She didn’t have PARP inhibitors. It’s back now but she’s doing well. Xxxx
That's extraordinary... thought I was way over top at 5000+ early summer ( now 214 after 18 weeks of 1/3 rd dose taxol) , first treatment round it was this chemo at higher 3 weekly regime which failed me as reaction like you... but has been ok. The carbo was fine to the end of 6 treatments but I became platinum sensitive as I recurred too soon
Sorry to hear that your body reacted..and that the doc finds something that works.
As I keep saying we're all extraordinarily different...janet x
Hey Suzanne
Sorry to hear this but please don’t panic. As a nurse I’ve seen Cisplatin work well for many, push for it sweetheart. Just remember how well you are doing, this is just a blip.
I think I've mentioned before , ( cannot remember ) , but carbo second time around almost finished me off on the chemo ward ! Taken into hospital to de sensitise and they almost lost me ! However, Slow , oh so slow Cisplatin ( 2nd time for me ) worked a treat and held the buggers back for over a year . ( then Immunotherapy trial ....and now Cyclophosamide ....Marian is right , dont panic . My very best wishes x
Thank im sorry to went through that too. It was scary first time as it was anaphylaxis. This time it was very controlled so on third dose they could see an early reaction.
Suggest you give the Ovacome nurse a ring as it may not be wise to wait for third line treatment but push for Cisplatin now. I may have got it wrong but in order to have the PARP inhibitor, I think you need to be considered platinum sensitive and I don’t know if you will be considered that if you are unable to finish treatment. I just don’t know but I think it’s best to check it out.
Hi Suzanne, sorry to hear about your treatment. Please push it through if you think it will benefit you. ( cisplatin ) Wishing you a lovely Christmas and hope to see you soon.Tracy ( Gleedy ) would love to join us when we meet. Take care. Xxxx
Hi Suzanne, Sorry it did not work but try to keep your chine up as you might know I'm on my 5th line of treatment in 3 years and each year was told that it could be my last, there are treatments out there, if you are not happy with the treatment your team offers maybe a second opinion would help, I had one and was very please I did.
Take care of yourself and Merry Christmas Lorraine xx
Suzanne who said your platinum sensitive? Your sensitive to carbo but they havent tried you on cisplatin so now im really confused! Having had a much worse reaction to carbo myself and then being transferred to cisplatin which worked for me I dont get how they can call you platinum resistant? Please push for cisplatin ....
Suzanne, I was hospitalized for the cisplatin. It was given very slowly. I did great. Your docs might not like cisplatin because it may be more costly to dispense.
Hi Suzanne I agree with the wealth of advice and would say if they don't "like" cisplatin that is no reason for you not to try it. I think you are well within your rights to receive a treatment funded on the NHS with a track record office working on OC. I would agree about getting it as part of this line of treatment if you can, to give you the max time between treatments, but I'm sure you will decide what's best for you.
I wish you a good Christmas and hope you have lots of great times in the coming year. Xxxxxxx Netti
Hi Netti. Thank you for your reply. I am definitely going to push for the cisplatin. If I can tolerate it then I will be platinum sensitive which is what’s needed for the guidelines for olaparib. Seems I’ll always be platinum resistant now to carbo.
Yes. It comes from the same family as carboplatin. I could be ok with cisplatin. The side effects aren’t too great I’ve heard but I need to be platinum sensitive so really need to try it xxxx
S, cisplatin could work very well for you! Just remember to put ice bags on hands and feet. That will stop the neuropathy from getting worse, or, in my case I don't have any neuropathy in my hands at all. Forgot to ice my feet so have it there. You are a very intelligent person. Keep asking questions and pushing to advocate for yourself. The more you KNOW about your disease and treatment developments, the more doctors PAY ATTENTION. They find out they can not just dismiss your concerns. Being informed helped to save my life.
So sorry that the desensitising failed, Suzanne. Must have been pretty nerve racking for you from the start I should imagine, you're very brave. Fingers crossed for the Taxol doing a good job. 🤞
Hope you can forget it for a few days so have a Happy Christmas. 🎄🎁🥂
Thank you. I’m disappointed but going to push for another platinum based chemo. I’m going to enjoy Christmas.
I hope you have a lovely relaxing Christmas.
Lots of love xxxx
So disappointing.... stick with the idea of a second opinion and looking into cisplatin, perhaps somewhere were they are a bit more enthusiastic about it.... and don't lose hope. x
Sorry you had such a bad reaction Suzanne but relieved that they monitor us so well and that they were able to flush and reverse it before you became really ill. It’s a shame you can’t do carbo but good they will look at alternatives. I hope you are not too dispirited, keep as well as you possibly can be love, take lots of care ❤️Xx Jane
Thank you Jane. Yes I’m hoping there will be another plan in place. I’m going to get them to allow me to have cisplatin. I really need a platinum chemo so I can have the PARP after third line. It’s frustrating.
Yes I’m glad I tried. My consultant is very good. Our chemo unit hadn’t done desensitisation before so he pushed for it. They had Adrenalin ready and oxygen etc. It was a controlled reaction so only got to the rash stage. Was worth trying as I now know.
Thanks, Suzanne. Yes - four weekly taxols in and I'm dealing with it. Slowed up by a chest infection this week, but bloods still good enough for chemo to go ahead. Onwards and upwards with 2018 x
I'm sorry it hasn't worked and really hope you get to try the cisplatin. However, as I have discovered, failing conventional treatment opens doors to clinical trials.
Really sorry Suzanne....but you have certainly given it a really good shot....can't remember if you have tried caelyx....try to have a good Christmas and don't panic, relax....love Chris xxxx
I have read a lot of your post as well as many others in past months. I have a lot of similarities. I first was diagnosed in Oct 2014 w/high grade serous Grade IIIC, had surgery (debulking) then had 18 rounds of Chemo, Taxol & Carbo which Carbo was for a total of 6 times. Then March 2017, exactly 2 yrs from last chemo I have had a recurrence. Found by rising CA125, CT scan was clear but when PET scan was done, there was a small spot showing active cancer. So, surgery again followed by Chemo (Carbo, Gemcitibine, & Avastin). I TOO had anaphylactic reaction on 2nd treatment of Carbo, tried the next 2 treatments with pre-meds & etc with no luck so I was admitted in hospital & administered carbo over a 16 hour period (overnight in hospital), it worked, so my last 2 treatments with carbo were in hospital. Dr was persistent with Carbo since cancer did respond to it. Finished chemo on Oct 16, 2017, continuing with Avastin till Dec 29 when my kidneys started to fail so now that's been stopped & starting on PARP inhibitor Zejula, started yesterday
Would like to clarify a few things.
I am platinum sensitive which means - I responded to Carbo since my recurrence was after 6 mo of last chemo treatment, it was 2 years.
(Cisplatin is a platinum drug as well which is usually less tolerated) Platinum Resistant means your cancer does not respond to the Platinum Drug, therefore recurrence occurs 6 months or less.
I have researched myself a lot & it seems most of the treatments are pretty much standard protocol with slight variance according to doctor or clinic.
Good Luck to us All, OC is truly a battle & I am beginning to accept that there is no cure, only treatment at this point with lots of side effects. Hoping one day there is a CURE.
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Had my surgery
Second opinion?
Devastated with scan results 
Feeling angry - stoma supplies and dignity
Green light to South Africa!
