My Ovacome

Any similar experience please?

Diagnosed a year ago with Ovarian Cancer. Treatment has never gone smoothly...Anaphylactic reactions to Paclitexol, caeylex and Avastin.

Carboplatin and Gem stopped working for me. Now I have fewer options because of the reactions I have had.

I go tomorrow to see consultant to discuss this. I was too poorly to discuss options two weeks ago. Pain relief is starting to work. A transfer of care might become an option.

Has anybody else had such adverse reactions to all of the treatment. I just want to know there is hope for me out there.

If anyone else has experienced this what options are out there and how have they found it working for them.

Any information that I can read up on is appreciated.

Thanks sue

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Hi Susie,

I can't help with the specifics but I know that you can always ask for a second opinion. Learning from the other ladies on here, it seems that places of (extra) expertise are: the Royal Masden & University College Hiospital, both in London & also Christies in Manchester. I hope you find some good options for treatment. Hugs, Linda xx 🌺

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Hi Seasun36-uk. I have had reactions to all four drugs and my oncologist was telling me how unusual it was. Carbo worked for me first time round so I was in a very bad place when I had an anaphylactic reaction on the third treatment of my recurrence and the Doctor was not sure what to do. All things were not gloomy however and I am now on Abraxane. Apparently this is much easier to tolerate. I have had two rounds (six doses) of this and so far all is well on the allergy front. We just have to wait to see if it works. On the sideline is an immunologist who is confident he can desensitise for at least one of the three drugs I had the anaphylactic reaction to, but not the gemcitabine which gave me a spectacular rash. I hope this is a positive suggestion for you and wish you well.

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Hi Susie,

I certainy echo Linda's suggestion and can only add that Ovacome Support freephone or email may have other suggestions for a second opinion for your current specific situation. Ovacome freephone is 0800 008 7054 or email them...more detail of their support service is on ovacome.org.uk/support/spea...

Warm wishes, good luck and take care. Lesley x

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Hi Susie

So sorry your treatment has not gone smoothly. Would definitely ring the Ovacome helpline for advice of other treatment protocols. As Linda has suggested you can also ask for a second opinion either nhs or privately . I went to the Christie , well worth the trip north for me and £250 ( went private to get advice)

But would definitely see what your team are suggesting . Stay hopeful am sure they will have a plan of action for you .

Love and best wishes Kim x 💜

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Hi Susie, I would definitely agree with the suggestions the other ladies have made to you regarding second opinion

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Hi Susie, the other ladies have given you some great advice. Just sending hugs and best wishes - you've been through an awful time. I hope you find a treatment option soon!! Christina xxx

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Hi Susie

I had an instant bad reaction to Paclitaxel so went solely onto Carboplatin which was later teamed with Gemcitabine. Avastin didn't work for me and I'm classed as platinum resistant as my cancer became active again within three months of finishing the carb/gem combo. I'm now on cycle three of Caelyx to which I've developed a nasty rash. If it works I can live with that! I'm having a scan next Monday. Everybody's so individual it's hard to advise but I echo what the other ladies have said in their replies. Good luck!

Heather

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They told us that a second line treatment would be ifosfamide Chemo. You could ask your Dr. about that.

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