chemo failed - whats next

[Drew]

Hi all,

Do any of you know what is offered after gemceptibine and capceptibine have failed to work.

Heathers tumors have grown after 6 months of chemo, 3 months of both the above chemo.

We have an appointment with the oncologist on Monday next week and I'm looking for questions to ask him regarding what is next if anything. Heather is not ready to give up just yet.

Thanks Drew x

[louiepc]

Ahh Drew

I'm sorry the chemo has failed.

There maybe some other chemo that can be used? Have the tumours spread to other areas or have just increased in size? My Mum's had spread to her stomach.

It's good that Heather has got her fighting hat on. Hopefully she stays positive I honestly believe the reason my Mum lasted to when she did was because she was so strong and so positive.

I feel so sorry that there is no other advice I can give, I hope the news is good.

Take care all of you.

louie x

[PCUK Nurse Jeni]

Hi Drew,

There is another regime - but it is very toxic treatment, and Heather would have to be very fit indeed to have it, or even be considered for it. It is called Folfirinox, and is a combination of 3 drugs - Oxaliplatin, 5fu and Irinotecan. Only those who can handle it will be considered, as the side effects are far worse than gem/cap.

You can also ask about some phase 1 clinical trials, and see what is on offer. This might be a better option, as the side effects may be less, depending on the drugs being used.

Please email me at support@ address if you need further help. Leave me your phone number (but NOT on the forum), and I can call you to chat through options.

Jeni.

[laura]

hello drew, sorry about your news, you both, must feel devastated, i dont know about other chemos,bris chemo, GEMCAP, which is what heather had separately, bri had together, infusion on friday and then 6 tablets a day for 7 days, for three weeks then 1 wk off.

has radiotherapy been mentioned or offered?

take care both,all, of you, chip up love laura xx

[Nardobd]

Hi Drew

There are other chemo treatments out there...don't give up!

Wishing you both strength

Nicki

[Hopefulwife]

Hi Drew,

I am so sorry to hear that the GEMCAP hasn't worked for Heather. My husband Steve was on the GEMCAP regime and it didn't work for him - the cancer spread to his liver. They offered him the FOLFIRINOX regime based on the fact that he is normally fit and healthy. It is truly brutal and in hindsight I wish Steve hadn't agreed to try it. His attitude was that it might work so he would give it a go, and see how he reacted. He was the fittest person before PC struck, but the weight loss and associated side effects - I won't go into them - everyone here knows them to some degree - weakened him so much that when he went on the Folfirinox it just wiped him out. He became neutropenic and the dose was so strong it nearly finished him off. I would have rather he had had nothing and just had more strength and less hospital time. The regime is a full day of chemo then going home with a pump for a further 48 hours of drip fed chemo. The District Nurse has to come and disconnect it. Steve was fitted with a PICC line which did help with the infusion but the drugs are so strong that they do give side effects. Steve had pretty much no side effects on GEMCAP except cold hands but the Folfirinox gave him tingly feet, incredible tiredness and exhaustion, and some hair loss. The side effects don't kick in immediately but accumulate over time. I don't want to put you off because everyone is different, but I strongly urge you both to think long and hard about what you would be putting Heather through. It is a really strong cocktail of drugs. Had Steve been able to have another dose - he only managed one - they were planning to reduce the strength by 25%.

Looking back, I would rather have had shorter quality time with Steve than the horrible time we had whilst he was on the Folfirinox. Ask how long Heather would have without it compared to with it, and weigh it up carefully. If she does have a reasonable quality of life now, make the most of it together.

Sorry to be negative, but Steve didn't make a second round of Folfirinox. The week he was due to start it he started to bleed internally and was admitted to hospital but the CT scan showed things were too advanced and he was offered purely palliative care. He had two weeks in hospital then was transferred to our local hospice, where he sadly died an hour before Christmas eve. His story is on the forum for advanced cancer patients.

Whatever you decide, I wish you both all the best - and that you have as long as possible together. I haven't been on the forum for a while. Steve's funeral was on the 17th January and I have just checked in to see how everyone is doing. Other people have coped better with Folfirinox so read their stories too.

Diane xxx

[laura]

hi drew, diane is so right you need to weigh up options, if heather is able to make a decision, a fully informed one, then that is what i think you should do, cause its what is phsically happening to her, but i accept its emotionally for you! lots of love laura xxx

diane, so pleased to hear you on here, understandably its probably been too difficult for you, do hope your sons are ok and can accept some help, they probably think they have to be strong for you? take care diane and take your friends advice " be gentle with you" love laura xxxx