advice on how things will go please x

[claireRoberts76]

Hello again!... Thank you for all advice and help so far and Im sorry to ask questions.. Can I please ask if my lovely mum has 3 rounds of chemo followed by hysterectomy then 3 more rounds of chemo .. How long between each please? and We are all hoping for remission but if not is it more chemo? thank you all xxxxx

[Yoshbosh]

Hi Claire,

I had this pattern. Chemo was once every three weeks, then I had a break for a few weeks for surgery, then the final 3 chemo spaced every three weeks again. I started chemo in the April, and the whole thing was wrapped up by the end of September, including the break for surgery.

Your mum will probably have scans after the first 3 chemo to check it is helping, and to help determine the OK for the surgery.

I wish her lots of love for starting the process. It’s a scary time for you both.

Vicki x

[claireRoberts76 in reply to Yoshbosh]

thank you vicki for reply!! how are you now? so were looking at 6 months in total from jan 8th? would you say? If all goes well of course! Its very scary! xxx

[Yoshbosh in reply to claireRoberts76]

Yeah, I’d say 5-6months depending on timing.

As for me, if you look at my profile you’ll see I’ve been on a bit of a rollercoaster. I was diagnosed in 2016, and my 3 year anniversary is next month, so I’m hanging on in there.

Don’t forget that we are all individual and everyone responds differently to treatment etc.

Vicki x

[Irisisme in reply to Yoshbosh]

I got that too xx

[RonLitBer]

In response to your second question. Just to make a distinction for you.

All chemotherapy drugs are not platinum based. Typically they go with platinum drugs first as they are most effective.

If your mother gets to NED (no evidence of disease) and does not have a recurrence until 12 months after frontline then she is deemed to be platinum sensitive and they will re treat her with platinum drugs.

If your mother has a recurrence prior to 6 months after frontline treatment she is considered platinum resistant and in theory they will not give her platinum based drugs again. However, often even if there is a recurrence prior to 6 months platinum based drugs can still be effective.

The two other chemotherapy drugs that are used, which are not platinum based are Caleyx (Doxil in the States) ad Gemcitabine (at least these are the two I am aware of).

I also asked about determining platinum resistance if someone has had a partial response to platinum drugs and was told that if things grow more than 20% you are deemed to be resistant.

Hoping she reaches remission and stays that way.

[Irisisme in reply to RonLitBer]

Yes, there are so many options.

My path is in my profile. I am making holiday plans for later this year and just keeping my fingers crossed I won’t need more chemo.

I’ve had 2nd line Paclitaxel and it may work for me again, although it seems to have started post-chemo arthritis and I’m working with my GP to find an answer to that.

Claire - your Mum is on a well-worn path. However, you can’t predict the future as there are many variations but there is no reason why your Mum shouldn’t be planning for her future. You will have to be gentle with her, but don’t wrap the cotton wool too tightly, she will need room to breath!

Good Luck,

Iris 😁🍀❤️

[claireRoberts76 in reply to Irisisme]

thank you so so much xxxxx

[Hidden]

Hi again. First of all I had a hysterectomy, followed by 3 months of chemo. They then opened me up again to remove the tumours (the chemo had been keeping them inactive). Then I had the further 3 months of chemo. I was then in remission for 18 months. Pauline.

[Maxjor]

Didn't read all the other posts before posting but I too had 3 cycles of chemo, hysterectomy (debulking surgery) then 3 more cycles. I found the surgery quite painful--but they told me chemo two weeks after and I thought and begged for more time. They said no. So I started with chemo--for 9 weeks (each week) then surgery was one week after the completion of those, then two weeks post surgery, 9 more weeks. When done, they said I was NED so no more. I would ask your mother's oncologist but I think if there is still disease after the last one (of the last 6 cycles) they do more. But toxicity and how she tolerates it in general is always taken into account. And with PARPs possibly available to her now, they may choose to do something like that even if miniscule amounts of disease are present because such treatment can help eliminate the rest. No expert but it will add to questions you may have for the next consult. oxoxxo

[Flamingobeef18]

When I was first diagnosed my Oncology Surgeon told me to know that the next 12 months would be tough and the treatment intensive and recovery lengthy. For me this was accurate and good advice. It managed my expectations and stopped me putting extra stress on myself by trying to hurry things along.

I had 8 chemos followed by surgery and 6 more chemos. Then avatzin continued for 6 months more.

After all this my remaining tumours had shrunk considerably but I was not NED. However I did not need a another round of chemo for 2 years and I will be 5 years post diagnosis next month God willing!

As I think someone has already said we are all individuals and the measures used to determine successful treatment are only ever a guide. I have learnt not to get too hung up on the terminology used. After all I “failed” to achieve NED or remission but so far I am still here!

Wishing you both the very best

Juliax

[claireRoberts76 in reply to Flamingobeef18]

so you havent had any chemo since? are you ok ? x

[Flamingobeef18 in reply to claireRoberts76]

Sorry I realize I didn’t explain very well.

After the first course of treatment had finished I did not need any further treatment for 2 years. At this point I had my second line of chemotherapy. Then I had another 14 month break from treatment and started my third line of chemotherapy last September.

I have 3 rounds of chemotherapy to finish this course and so far my CA125 marker is coming down slowly but surely.

And yes I am okay. I am not as I was pre diagnosis but have worked hard at adapting to my new normal. In many ways I am as happy and content as I was before but in a different way. This weekend I booked a holiday in the sun with my eldest daughter, have a spa weekend planned for April with friends and a wonderful cruise booked for August with my husband and children. I now seize opportunities and prioritize pleasure!

Best wishes

Juliax

[claireRoberts76]

thank you so much for reply and so lovely to hear you are enjoying life!...It worries me about it coming back even though we have not got rid of it first time yet, but really hoping it will! mums going for second chemo today.. my brother and sister are taking her.... Every post ive read more or less it comes back its worrying xxxx