My wife just about to start 5th line of chemo, ... - My Ovacome

My Ovacome

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My wife just about to start 5th line of chemo, this time carbo/gemcitibine. How many more lines of treatment are there.

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30 Replies

Hello

Welcome to the site that none of us want to be on but are jolly glad we found it!!!

I was diagnosed in 2007 and am now on my 7th line. There are lots of different treaments out there so don't despair.

The carbo/gem treatment is tiring but not too bad. Does knock the neutrophils a bit with some people. Have seen some ladies on here who have responded quite well with it.

So good luck to you both, we are always here for advice, support or morale boost and the ovacome help line with Ruth Payne is wonderful.

take care

Sue x

in reply to

Thanks for support, feel free to read her history on profile page xx

Good to know, Sandra had Carbo/Taxol followed by the Rotterdam, followed by Caelyx/Carbo, followed by 12 of 18 weekly Taxol, now this one. Each treatment reduces the cancer but always returns within 3 mths. Fingers crossed this one gives us more time in remission

Sorry you have all this worry, wishing your wife success with her next chemo.

best wishes x G x

in reply to

Thanks for your support, I have entered more details on my profile page, thanks xx

I don't have anything to add on treatment as not experienced - simply wanted to offer a virtual hug and say how wonderful I think you and the other husbands and partners are. It's not only a long haul for us - you chaps go through it too, just in a different way. I am always really touched by the "other halves" who blog on here. Those of us who are lucky enough to have strong supports would all agree that we really could not do this without you - and I am sure Sandra would agree too.

Love

Sue xxx

Whippit profile image
Whippit in reply to

hear hear to that Sue!

in reply to

I agree, my husband has been amazing thoughout everything.

Chris x x

Meryl profile image
Meryl

Am almost thro 5 th line carbo gem. It's working we'll, just tired but disease going away yet again. Like you I wonder how many more but I try to live for the moment. I know the time will come when they run out of ideas but still a few to go and I'm enjoying my life with my husband and lovely family. Stay strong I know how much you guys go through to support us and we love you for it.

Meryl XXXXX

in reply toMeryl

Thanks for support, seems Sandra is following your path each time except our docs at the Christie don,t use Topotecan. He said he was running out of options but speaking with thos who did carbo/gemzar seem to do well with it. Keeping strong although 2010 was tough when she had empyema resulting in a chest drain and antibiotics for 7 wks in hospital. Paul xx

Your wife is obviously strong. I'd suggest two things, one is that you consider the posts by drdu about ibuprofen, which seems to be helping her to stay in remission. The second is that you consider complementary treatments like mistletoe. Mistletoe has to be prescribed by a homeopathic doctor - there is one in London, you may be able to find one in Manchester. Check the list of doctors at the British Homeopathic Association. NB please do NOT consult a homeopath who isn't also medically qualified - they do not have the proper qualifications and can cause more harm than good. I can give you the name of a good doctor who practises privately in London - a consultation would cost a couple of hundred pounds. Send me a PM if you want details.

in reply to

We heard cranberry juice was also good for OC, Sandra had a glass every day but still the cancer returned. She was also on Ibruprofen for pain but it knocks the kidneys so back on paractemol. Thanks for advise on homeopathy, will consider post next round of chemo.

Whippit profile image
Whippit in reply to

I read your profile and the replies on this blog and I'm just awestruck and humbled that women are dealing with so much chemotherapy. I think if you are determined to continue the oncologists will do their best to keep giving it to you and that buys us time. Who knows if we can survive by taking what's currently available there will be new breakthroughs.

I'm going to see an oncologist who practices homeopathy. They are available but think you might need to take this option when Sandra has finished her chemotherapy.

Wishing you all the best with this. Keep posting and we'll do our best to cheer you both on.

Please don't forget Members' Day on 18 May. It would be really lovely to meet you both.

Love Annie x

in reply toWhippit

Thank you all for your support, after 4 years of fighting this stuff its nice to converse with everyone in the same boat. Luv Paul and Sandra xx

Whippit profile image
Whippit in reply to

Dear Paul and Sandra

This site is a lifeline to many of us. Living with cancer can be lonely because it's not exactly a conversation topic but here you'll find many friends who are happy to chat.

Love Annie x

wendydee profile image
wendydee in reply to

There is also some research which has shown that ginger and also turmeric have had some success in keeping the beast at bay. It's worth investigating all these, I think. There is also the Penny Brohn Centre in Bristol, which used to be the Bristol Cancer Centre. They combine complementary therapies with the usual medical approaches and their website has lots of info and resources. The ibuprofen was taken with something else (see Drdru) to alleviate the effects on the stomach. Good luck in your research.

Love Wendy xx

So sorry to read of your horrendous time with the disease.

I have just started second line with no remission between first and second.

However may I ask why no topotecan?

I ask as this is what my chemo Dr has started me on, when taxol no longer had any effect.

in reply to

I think he was trying to suggest it would be ineffective as a 5th line or beyond form of treatment

in reply to

Thanks

jkavensky profile image
jkavensky

I remember when my mother's oncologist told me that if he thought the chemo drug for her fifth line of treatment would be effective, he probably would have used it sooner. He was an insensitive idiot and my mother passed two months later. There are many different drug combinations out there. If I had known, I would have (and you probably still can) sent a tumor/tissue sample to The Clearity Foundation in California, US, as they do tumor profiling for ovarian cancer and can help uncover the best combination of drugs to battle her beast. They have a website for you to look into how to do this from the UK.

thehusband profile image
thehusband

Hi, just want to say good luck, my wife had gem/carbo for her 3rd line treatment and whilst quite tough, she basically tolerated it ok, while she was having it (8 cycles) her CA125 dropped to its lowest ever level - but still just over 100.

Unfortunately for us our Onc wont try anymore chemo, we have had 4....carbo/taxol, then weekly taxol (4 sessions only) then gem/.carbo then Caelyx....i would have liked her to have carbo with the caelyx cos it seems that the only time she gets any benefit is when she has carbo...but they wont do anymore.

Good luck.

in reply tothehusband

Thanks for your info, may I suggest you ask your onc to try the Rotterdam regimen. This is Cisplatin plus Zopotide. The zopotide is a tablet taken weekly for 12 months but the Cisplatin is weekly 13 hr drip for 6 cycles. Its a tough regimen as it means an overnight stay on the drip. My wife found it difficult to do the 6 cycles because she was carrying an infection, she did 5 and never continued with the tablet. It did however put her into the longest remission so far of about 12 mths before she went onto the caelyx/carboplatin, other women found it tolerable to do the full stretch with good results. We are with the Christie in Manchester who are reputed to be one of the best. Good luck but do try the Rotterdam, its worth a shot. Rgds Paul

thehusband profile image
thehusband in reply to

If only...........our Onc will not do anymore, nor will the Marsden, it is very infuriating. They say nothing is going to work, but 'work' for them and us are two very different things.....for us 'work' is buying time i.e 3,6,9 months more life, for them 'work' seems to be total remission.

We know thats not going to happen for us, but even an extra second is worth it.

in reply tothehusband

Get your onc to speak with Prof Jayson at the Christie in Manchester, I can give you his secretary tel number if required. I have known a number of sufferers who were referred to Christies after being told there was nothing else could be done by their local onc and they survived an extra 2 years. Good luck.

thehusband profile image
thehusband

I can try but given that it took me ages to get our Onc to refer us to the Marsden and now we have to go back to that Onc again....i am not going to hold my breath, but yeah i can try, in fact i may even try myself.....cheers for the info

in reply tothehusband

Prof Jayson secretary is Lisa, her number is 0161 4463606. perhaps he can access your wife,s details through the nhs computer system.

thehusband profile image
thehusband in reply to

Cheers

in reply tothehusband

We have just spoken with the prof before treatment starts and he reckons if this does,nt work he will probably put us back on this Rotterdam. Did you make any progress.

thehusband profile image
thehusband in reply to

Saw Onc today and my wife is, as suspected, been put on Letrozole. We are going to see how this goes till we see the Onc again in 2 months. In the interim we will try and sort out the sodium level issue, because that is going to stop some possible treatments in the future.....we are hoping that when we see Onc in 2 months, her CA125 will not have risen past whatever todays number is......we shall see....

Lily-Anne profile image
Lily-Anne

The NCEPOD research for cancer paients had lots of answers for me, you may find that it answers yours too.

LA

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