Update on previous post.

[Davonian]

Update on previous post: so after comparing scans from April to recent it has grown quickly. Taken all by surprise and whether it was the Avastin that had been holding it back which was stopped in March they don't know. So we are where we are, unfortunately and I have to have chemo to stop it, reduce it etc Which is, Carbo/Caelyx to start every 4 weeks asap. Midway, debaulking maybe, removal of tumour, maybe, then continue on to finish the 9 treatments and possibly a stoma reversal. Followed by Niraparib maintenance.

Had carbo/plactitaxel followed by Avastin 4 1/2 years ago which was doable. So obviously wondering and anxious as to how this mixture will perform? Been advised of sore mouth, downtime of 10 days and red/soreness palms and soles of feet. Any advice gratefully received.

My love to you all xxx

[Meridian14]

Hi Davonian,

I'm in a similar situation, though, you have had a longer remission than me. I finished first-line chemo (Carbo/Taxol) in December 2019 and finished Avastin in July 2020.

I then started having symptoms in January 2021 but CA125 stayed stable, at 6, and scans clear until end March 2021 when bloods shot up from 6 to 25 then 33 then 43 and scan showed lesions on liver (I already had a small lesion on my liver after debulking - it was quietly hiding under the lining of my liver and did not show up on scan before surgery)

I was on the verge of having second surgery at the beginning of June but because of my symptoms it was decided that I should go straight onto second-line chemo (Carbo/Caelyx). I had my second infusion a couple of weeks ago. I'll have a scan a couple of weeks after my 3rd cycle and the team will decide if surgery will be appropriate at that stage.

So far I have found it not that dissimilar to first-line. The first 2 or three days i feel okay-ish, carried through by the steroids, and then i nose dive and feel very yucky from about day 3 or 4 through to day 6 or 7. I'm on day 10 now and I feel okay. No loss of hair on this one.

Side effects for me so far from days 3 - 7 have been fatigue, some dizziness/ light headedness, a slightly sore mouth (but thankfully no mouth ulcers so far), breathe not so good during these days so more regular than usual brushing with very soft brush and mouth wash. A fair bit of nausea during those days but I haven't actually vomited. Breathlessness when going up the stairs (fast heart beat), feeling very dehydrated (no matter how much water I drink), slight headaches, and the usual feeling like i've got poison in my body - yuck! I have also had a lot of abdominal discomfort this time around, all up my sides, under my ribs, sides of my lower back. I'm not sure why this is, but i'm definitely having to take more pain killers this time around. Maybe because this time there is more cancer to deal with whereas first-line chemo the macroscopic cancer had all been taken out beforehand. I don't know, i'm just guessing. Ever so slight neuropathy in feet, but nothing major - i'm keeping an eye on it. Slight discolouration of my skin under my arms.

My neutrophils struggled to come up enough in time for 2nd infusion, so that was delayed by a week. My Onc decreased the drugs slightly and after the 2nd infusion, they sent me home with a box of 5 Filgrastim injections (keep in fridge) to do at home from days 9 to 13, which will stimulate the bone marrow into producing blood cells to make sure that my next infusion runs on time. Some people get achey bones when they start these injections, but so far (on day two of injections) I'm okay.

During first-line i never had any delays in chemo but my bloods/neutrophils definitely took more and more time to reach the required 1.5 for chemo to go ahead. So clearly on this second-line regime, my body is finding it a little harder to get back to 'norm'.

A tough few days to get through during each cycle, but do-able (do we have a choice?). Hope that helps prepare you a bit more.

I too have a stoma (Colostomy - I had sigmoid section removed) and was also told I may be able to have a reversal. I have a hernia around my stoma and so i'm always wearing a sturdy support belt. My surgeon said that if the recurred cancer is only in one or two sites (i have a feeling it's more) then he may be able to reverse the stoma. He would have to do an assessment of my bowel first to make sure there is no disease on my bowel. I have been mulling this over for a long time and I'm swaying towards not having a reversal. My reasons; my priority is for them to get rid of the disease, I have seen a number of posts whereby some women, after having had reversal, are struggling a bit with gastrointestinal issues - scar tissue strictures and stomach pain. If I was to go ahead with reversal, it would be two part surgery, another stoma (ileostomy) would have to be created in order for the colostomy to heal. Then I'd have to under go further surgery to reverse the ileostomy. I'm still a little undecided.

Wishing you all the best.

Lisa x

[Davonian in reply to Meridian14]

Hi Lisa, seems we too are in a similar situation even though you are ahead of me. I've had the same thoughts too and realise I've got to face it head on. Even now and its very early I'm thinking would the reversal later on cause more problems. My head is always out in front of everything else. 🙄😀 Keep me posted on your progress. My best wishes, Jaki xx

[Lyndy]

Sorry to hear that you are on the chemo treadmill again. I had the experience you describe where the cancer appears stable and then suddenly goes for it. I can’t advise you on that chemo combo, mine was different but you know the ropes now xx

[SUE7777]

Hi Davonian Haven’t got any advice, just to let you know I’m in the same boat. Currently in Hospital having Ascites drained and will be starting Carbo/Caelyx in 2 weeks due to progression. Will update soon. All the best Sue xx

[Davonian in reply to SUE7777]

Not much we can do but just stand up to it and face it head on. Few of us in the same club at the moment.

Keep me posted, Sue and how you're doing.

All the best, Jaki xxx

[SUE7777 in reply to Davonian]

Thanks Jackie, I just got out of Hospital about an hour ago because I needed an ascitic drain, they got 7 litres, the last one was when I was first diagnosed in Sept. 2019 when they got 11 litres. I will be starting on the 1st of July. Take care, Sue xx

[rosebine]

I had carbo/caelyx and still got one more to go after op . Ive found it easier than carbo/taxol. I was dreading taking it as its called the red devil, which makes you think its going to be really harsh, (I didnt even get the red wee that its named after !)

[Davonian in reply to rosebine]

That's so good to hear! My husband has just said, "there you go" after I read your note out loud to him. 😀 I'd heard it called the red devil 👿 and like you was initially, I am dreading it but I'm putting on a brave face. 🤗 Big girl knickers too. 😆 x

[rosebine]

A caveat here, I forgot that the first one my bloods were very low and I had a transfusion, but it was reduced and no further problems, it actually worked better for me than the first lot of chemo and ended up with my inoperable cancer being operated on ! I find it hard to get my head round how everyone fares differently, the cancer is the same, the drugs are the same, but everyones "journey" is unique.