3rd line chemo

[Mjb49]

Advice please on gemcitabine/carboplatin

How have other ladies found this treatment, any advice would be welcome, is it worth Trying a cap for hair loss ? Thanks Maggie

[Katmal-UK]

Hi Maggie, Ive had both carbo / gem and cisplatin/gem and didnt have any hairlos, well maybe a VERY slight thinning, I stress very slight xx

[Mjb49 in reply to Katmal-UK]

Hi kat

Thanks for reply and good to know that no significant hair loss, did you find this chemo reasonably tolerable,

Thanks Maggie

[Katmal-UK in reply to Mjb49]

Hi Maggie. I had to swop from Carbo on to cisplatin (which is harsher) as I became allergic to the carbo part but yes, its reasonably tolerable. The first 3 doses werent too bad but as I got to 4, 5 and 6 the side effects became more pronounced but as long as you have the right anti sickness meds to hand and rest as much as you can its tolerable and for me it worked well. For the second recurrence it actually put me back into remission after the 3rd cycle. I did however continue and have all 6 cycles as advised by my oncologist. take care xx

[Welshandproud]

Hi there Maggie

I've had the first two infusions of carbo/gem and so far so good with my hair. I was told that it shouldn't cause any more than slight thinning. Certainly no need for cold cap. Good luck with the treatment. My biggest issue is tiredness and indigestion atm.

[Mjb49 in reply to Welshandproud]

Hi thanks for reply

Hope that you’re finding this treatment fairly doable, have you found problems with sleeping a problem, which is contributing to your tiredness?

Is treatment every three weeks and are you at the hospital about 4hrs or longer.

Thanks Maggie

[Welshandproud in reply to Mjb49]

Hi Maggie so sorry for the latereply. I have carbo and gem week one, just gem week 2 and a week off. The gen only takes about half an hour and the carbogem about an hour so not too bad really.

I do find it difficult to sleep right through but I am taking steroids for joint pain. They are brilliant for the pain but can stop me sleeping . I hope you are finding the gem carbo doable xxxx

[Alifit]

Hi Maggie - I’ve just started too - two infusions in! I’m told my hair will thin, but then it didn’t fall out on taxol, so I think I’ve just got sturdy follicles! I take an anti-sickness drug called Akynzeo an hour before chemo, it lasts for a few days and seems to be easier on my bowels that Ondansetron. Dexamethasone for three days, then Domperidone for three. I didn’t take the Domperidone last week so felt a bit sick - must try to do as I’m told! I have acid reflux anyway, so I take 40mg Omeprazole every day which seems to keep the steroid indigestion at bay.

I’m hoping I have more energy in what they laughingly call ‘the week off’!

This is my fourth line chemo - I was diagnosed in August 2016, but I still feel strong enough to manage this at the moment - I’m just hoping this one works for a bit!!

Good luck, I hope it works for you too. Ali x

[Mjb49 in reply to Alifit]

Hi Ali

Thanks for reply good news about hair, hope that you’re feeling as well as possible and you get a nice long time in remission afterwards , do you have chemo for three weeks then have a week off ?

They haven’t run through this regime with me yet, as I was hoping for more surgery or another trial if possible .

All the best Maggie x

[Alifit]

I think the standard regime is a full dose of carbo and half the gemcitabine on day 1, then the remaining gemcitabine on day 8 then nothing until the start of the next cycle which is day on 22 but is called day 1 again. My team deliver it slightly differently in that I have half the carbo and half the gem on day 1 then the same on day 8. Other regimes may be available!! I explored surgery and a trial at the Royal Marsden which I was unable to take part in due to some bowel anomaly! I guess it makes life easier having treatment near home but I was disappointed when I was turned down.

With my best wishes Ali x

[TarbonNZ]

I had this regime for 2nd line. I had some hair thinning, but the key thing for me was the effect on bloods. I had four blood transfusions over the period. I also had issues with my mouth and ulcers, so make sure you follow the mouth wash protocol. I had carbo gem one week, followed by gem alone the second week. I managed to complete all cycles. It did push the cancer back quite quickly, however I am currently doing third line. I did manage to hold off further treatment for 11 months tho.

[Mjb49 in reply to TarbonNZ]

Hi

Thanks re advice about mouth ulcers I will definitely use mouth wash, and find out if their is anything else they can give me. This will be for my 3rd line chemo so hopefully will get a good response , 11 months sounds good. That was a lot of blood transfusions you needed, but well worth it if you were then able to to complete the course. Good luck with your present chemotherapy and fingers crossed that you have an excellent response to it.

All the best Maggie

[jenny8c]

I had cisplatin and gemcitabine and my hair has gone really thin and it is continuing to come out 5 weeks since my last dose so it just goes to show that we are all different. I found it my hardest chemo so far especially where nausea was concerned. I just about got the medication right when I was stopped from taking it as although it was stinking some pelvic tumors I was getting new ones on my liver. Hope you have better results than me - good luck xxx

[Mjb49 in reply to jenny8c]

Hi Jenny

That sounds pretty devastating. As you said we’re all different, so hope that your team come up with something that gives you better results next time.

I think that we can all tolerate a lot of the awful side effects as long as it’s working, or we have partial shrinkage.

All the best Maggie

[thehusband]

My wife had gem/carbo as 3rd line. She was meant to have 6 lots but ended up having 8 as firstly it was tolerable and secondly it kept on reducing her CA125. Of all the treatments she had, this one was the most successful. I know of course what works for one, may not work for another etc....But in any event good luck.

[Mjb49]

Hi thanks for your reply,

I have just read your wife’s history I’m so sad that she had such a terrible oncologist who blocked all of your hopes for referrals and chemo. I hope that she’s not still practicing as an oncologist.

I think that most of us ladies are told that we cannot be cured, especially when the disease is more advanced. But that the disease can be managed for as long as possible. I’m still waiting for an answer from my oncologist if they will ask if the royal marsden have any trials, or if professor Fotopoulou would look at my last scan to see if she might consider more surgery? They have booked me in for more chemo starting next week, I’m still chasing them though for answers re surgery/trial an uphill battle I’m afraid.

Anyway I hope that gem/carbo works well if that’s the path I have to take.

Thank you again, and I hope that you’re doing ok

All the best Maggie