Caylex not working - Topotecan (Hycamtin) next.

[Itha]

Hi everyone

Anyone else been on this? Caylex not working for me

What else did you try after Caylex?

And - side effects of Topotecan? What should I look out for and be aware off?

Thanks!

Itha

[candyapplegrey]

I'm supposed to be having caelyx next but with carboplatin so no experience of it yet. Just wishing you all the best that the next drug works. x

[Irisisme]

Hi Itha,

Calyx didn’t work for me either. It was a long shot but, after being on it in 2021, I went back onto Pacletaxel (with Avastin) and have had 16 infusions. I have had to take a break now so I’ll just be on Avastin every 3 weeks. The lesions are slightly reduced and my CA125 came down from nearly 5,000 to just 10 😃

I have never heard of Topotecan, sorry, but Good Luck with it.

Iris🤗

[Itha in reply to Irisisme]

Thanks Irisisme. My count is CA125 9101 at the moment and the tumors are making my life very uncomfortable as most are in bowl area. Let's hope the Topotecan works else I am sure my oncologist will try something else

[Irisisme in reply to Itha]

That sounds problematic. Maybe it will give you hope if I tell you that last December I was given a prognosis for the first time in 8 years - and it was an expectation of a few months of life. Things look very different now and I’m planning for my future. I hope the new drug helps with your future.

Bowel blockages are a curse. I hope that your oncology team continues to look after you and you find some relief.

Iris🤗

[Itha in reply to Irisisme]

Thanks - I am hopeful. I was diagnosed in Oct 2020 (stage 4 B). This is my second recurrence - have had 2 debulkings and 2 series of chemo. Both times I had a NED response and CA 125 never been this high. But it is back with a vengeance and it is not fun at all. xx

[Leniko in reply to Irisisme]

Avastin kept me in remission for a long time!

[Lizz49]

Hi Itha,

Sorry to hear you’re facing a recurrence and more treatment, I haven’t heard of that drug but I really hope it works well for you and you start feeling some relief from your symptoms. Have you considered any clinical trials?

It’s so difficult living with disease but if you find something that offers long term stability then that would be a win, so I’m praying that the treatment works and you start feeling better soon, sending healing hugs Xx

[Pumpkininja]

Hello @Itha, Hope you are doing well.I had my 6th round of caelyx/carboplatin on the 02/05. The ca 125 went up from 520 to 690 my last 2 times: the first due to a bacterial infection and this time doctors are worried the treatment is not working.

So they did me a emergency MRI last Wednesday the 8 th of May( waiting results).

To see what will be the next line of treatment: it can be just be a flutuaction( praying) of ca125, or then have another treatment if cancer is coming more aggressive: a the gemcitabine or a trial was talked already.

Caelyx /carboplatin has many side effects but really depends from person to pers(i was not a lucky one if you read my old posts).

would suggest just try to follow what doctors advise.

Topotecan never heard about, I'm sorry.

May I ask you what was your experience with gemcitabine and cisplatin?

Hope all goes well for you.

Best wishes xxx

[Itha in reply to Pumpkininja]

Hi

Gemcitabine and cisplatin: was not too bad. The main side effects were from cisplatin. Typical flu like body, tiredness and nausea. All stuff one can manage to some degree. My hair did lose its shine and did get thinner and quite dry, but I did not lose it all. It gave me a NED response but it only laste for 4 months and then the cancer came back

xx

[Pumpkininja in reply to Itha]

Thank you dear Itha wish you all the best.You will not loose your hair with caelyx/ carbo just the hair gets much thinner and i needed to use products to make it look a bite like before.

Anyway so good keep the hair in my head lol.

The next 7 days pos treatment very heavy like any chemo: nausea, tiredness, feeling like was run by a car.

Unfortunately I also did dark pigments on my face( they gave me a cream and went much better).

Did infection of the linus of the mouth ( mouth full of ulcers, aftas) they gave me a "magic" mouth wash with lidocaine.

Did also retention of water : my legs were so swollen and belly that was extremely paininful but I survived and is gone.

All the other things associated with taxol I got in a very small degree with this one.

Etc.

In my humble opinion the effects of the treatments really dependeds on person to person.What it matters is that works.

Is so frustrating arrive to what I thought was the "end"(at least for 1 year) of a small battle and have to go to the war again.

Big hug and all the best xxx

[Itha in reply to Pumpkininja]

Caylex not working for me....so now looking at trying topotecan. I did start to get an allergic reaction to the carboplatin - so not an option at the moment. The Caylex also giving me terrible water retention! Not very comfortable at all

[delia2 in reply to Itha]

By contrast he way I’m at Dana Farber in the US and having carboplatin in a desensitization unit. I had an allergic reaction upon my 14th time getting it. But you could look around or get your oncologist to try this protocol. They give me six premeds, and deliver the drug over five hours, first super diluted and slow until the very end when it’s normal concentration. No problem with it.

[Itha in reply to delia2]

Thanks so much!