What next ????: I was diagnosed July 2012 with... - My Ovacome

My Ovacome

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What next ????

woolton profile image
14 Replies

I was diagnosed July 2012 with stage 3 high grade OC

Had surgery and chemo

Been on trials and this year it's back in left kidney spine and it's grown more in lymph nodes

Seen Oncologist who recommended chemo was on caleyx and carboplatnum but after three sessions the side effect of the caleyx was to much ended up in hospital for a week having two blood transfusions and had low magnesium and potassium and sepsis as the caleyx wiped me out

So decided on just the carboplatnum and half way through had a reaction arm went bright red and raised gave me hydrocortisone and iv piriton and wanted to go ahead with the rest of transfusion but said no

Went yesterday for just the carboplatnum again and before the transfusion they gave me the hydrocortisone and piriton and half way through the same reaction so they gave me the hydrocortisone and piriton again and we always agreed that this chemo is not working so seeing my Oncologist next week my magnesium still low

Problem is what can they offer me if anything

I noticed on the chemo sheet it said palliative chemo

Any help please xx

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woolton profile image
woolton
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14 Replies
Lily-Anne profile image
Lily-Anne

What are they trying to achieve from the chemo they are giving you? It's always listed as pallative when it recurs even if you are looking at a long remission, so I wouldn't worry too much about that. Are you in any pain?

LA

woolton profile image
woolton in reply toLily-Anne

They are hoping to stabilise the growth as I am supposed to be having radiotherapy on spine after the chemo feel terrible xx

cah48 profile image
cah48 in reply towoolton

Oh, poor you! Caelyx didn't work for me either and had to stop after 4th session. I've just finished radiotherapy on my pelvis and hoping it will put the brakes on the tumours. Palliative means controlling growths and limiting side effects of the disease. They only use the word terminal when they have tried everything and nothing works. I'm no medic but I would say there are many options open to us that we have yet to try. So try not to worry and let's hope 2017 brings us all health and happiness. 😍 Carole H x

woolton profile image
woolton in reply tocah48

Thank You Carole that has made me more positive

Yes your right another year another fight xxxxxx👌🙏💕

Katmal-UK profile image
Katmal-UK

Hi

I had a severe reaction to Carbo and they 'swapped' it for gemcitabine. Don't despair there are other drugs they can try. I hope they get this sorted for you. Kathy xxx

Sherrym profile image
Sherrym

Have any of your specialists mentioned PARP inhibitors. I think they may be available after 2nd or 3rd line chemo. I was seen in London by Jonathan Lederman who says they offer great hope when all else is failing.

woolton profile image
woolton in reply toSherrym

Thank you will ask about these it's good to go to appts with information xxx

Sherrym profile image
Sherrym in reply towoolton

Des Barton is working with plasmajet at royal marsden on ovarian cancer too I believe. If u find out anything about that, please let me know.

I am still pegging level at mo, so trying not not think too deeply on it all, but my time on this site hopefully will ensure I am forewarned & forearmed.

Much much luck x

Did they slow the carboplatin down, as well as the extra drugs? I ask, as I managed to have it earlier this year on a "desensitisation" regime which took for ages but I did complete.

Parp inhibitors tend to be available only for BRCA mutated women or tumours or on trials....

Good luck xxx

woolton profile image
woolton in reply to

No they didn't thought this is what they might do I do have the brca gene so will ask about the parp inhibitors knowledge is power isn't it when you go to appts xx

Katmal-UK profile image
Katmal-UK in reply towoolton

Hi Depending on how severe your reaction is they may not want to even attempt desensitisation (I know they wouldn't with me). I'm on a trial for Olaparib which is a parp and I have the BRAC gene and I have had 2 recurrences so three lines of chemo. Might be worth mentioning as I am currently 3 years 4 months NED and hopefully (I have a check up in January) going strong. I do hope they find something for you which I am sure them will. All the best for 2017. Kathy

woolton profile image
woolton in reply toKatmal-UK

Ah thank you xx

Di16 profile image
Di16

When I started 1st line chemo (carboplatin) 3 years ago, the oncologist wrote on a form palliative not curative, & asked me to sign to say that I understood that. They are trying to control my disease for as long as they can. I am now on 3rd line, had my 3rd caelyx infusion yesterday, though the onc I saw said my white cells were a little low, so will have to be careful to try to avoid infection, & hope they're not wiped out for next time. And my magnesium is always low. Di

ScardyCat40 profile image
ScardyCat40

There are other chemo options and also the possibility of trials. Its always called pallative chemo for reoccurence as its for symptom mabagement. I have had chemo 3 times so far and there are women on this site who have had more

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