Experiences please.: After Rucaparib failed me I... - My Ovacome

My Ovacome

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Experiences please.

fendweller profile image

After Rucaparib failed me I have decisions to make after my next scan in September.My choices are - if no change watch and wait , if changes either hormone tablet ,or Carboplatin and caeleyx , can't spell it, my oncologist said the hormone tablets are only 20% successful. What are your experiences of both , success and side effects ,I know everyone responds differently but I need some pointers .Thank you .

Cheryl x

26 Replies

I had Carbo/Caelyx before Rubraca. It wasn't too bad, a lot easier than Carbo/Taxol. It got me to NED and I then started the Rubraca.

fendweller profile image
fendweller in reply to 27-359

Thank you for that ,I finished second line carbo/ Taxol then Rucaparib which didn't work for me ,was good to hear you did ok on carbo caelyx. Cheryl x

Hi Cheryl. I hope the scan is as good as it can be under the circumstances but I had carb caelyx for first recurrence and found it quite tolerable. It didn't completely get rid of my cancer, but it decreased it by 75%. My oncologist kept reducing the dose of both drugs because my platelets were really low though they did bounce back each cycle. You have to take care of your hands and feet with moisturizer and you can get bad mouth sores but I had three weeks each cycle of feeling good. Also, on the 20% success rate for the hormone blocker, it sounds like bad odds but my daughter who is a nephrologist says those are decent chances when it comes to saving your life. (I don't quite get her reasoning but she was emphatic about it). If I were you I'd probably go with chemo, much as I hate it. xx

fendweller profile image
fendweller in reply to delia2

Thank you Delia ,that's given me some hope and confidence to do it ,it's a hard slog this keeping alive isn't it .😀 Cheryl xx

I am in the same position as you fendweller. Had my pET scan last Friday and will see oncologist this Monday. I still had low activity in my lymph nodes in my chest at last scan as Rucarapib did nothing for me. In US the ladies get to try another Parp which seems to have worked for some.

Thank you , I'll bear that in mind for my next appointment ,good luck with whatever your oncologist throws at you next Cheryl x

Dear Cheryl, My history is almost identical to yours - I was diagnosed in July 2019, full abdominal hysterectomy followed by 6 months chemo. 0nly Carboplatin as I had a serious reaction to Taxol & it was stopped after seconds. NED in December 2019. Unfortunately, had to be admitted to local hospital for urgent surgery for bowel blockage in July 2020.Had routine visit to my gynae/surgeon in November & b/t showed slight rise in CA125. I persuaded the surgeon to refer me for CT scan, which showed 2 suspicious areas. She consulted with my oncologist & the decision was to watch & wait & put me on hormone treatment, which had 20% chance of working. Initially I refused this until my GP phoned & persuaded me 20% was better than nothing! I took the tamoxifen for 4 weeks & my oncologist repeated bloods & CA125 had shot up. She then did a CT scan & it was not good news so she started me on Carbo/caelex in May 2021. I have it every 4 weeks & had 3 cycles & unfortunately had to have more urgent surgery for a hernia, so 4th cycle was delayed by a week & I had it 2 weeks ago. The chemo is definitely “doable” maybe takes a little longer for me to bounce back but I am obviously weaker & am 74 years old. Next bloods & oncologist appt in 10 days to review🙏🤞🏻.

Please message me if you would like to ask any further questions.

Best of luck,

Kathy

fendweller profile image
fendweller in reply to Everhope

Thank you Kathy ,we are very much going along the same road , good to know carbo caelyx is doable ,I'm going to go for it rather than the hormone.Have you lost your hair ,I've lost mine three times when on Taxol ,sick of it , I hope you have good news at your next appointment ,do let us know .Cheryl xx

Everhope profile image
Everhope in reply to fendweller

No, I have not lost my hair. One very important thing I forgot to say was that after 3 cycles of carbo/caelyx my CA125 had dropped dramatically. Was raised after 4th but my oncologist said that was not surprising as I had surgery 10 days previously.Have everything crossed for us both.

Kathy

fendweller profile image
fendweller in reply to Everhope

Thank you so much for replying ,I can't tell you how much better I feel now ,I'm ready to fight again .Cheryl xx

bamboo89 profile image
bamboo89 in reply to Everhope

Thanks for your post - I'm in the same boat as fendweller really, had to stop Niraparib due to side effects and rising CA125. Had a CT yesterday, will see the oncologist in two weeks, she's already talking about more carboplatin and mentioned caelyx too... I'm a bit worried about the caelyx, to be honest... but carbo, even if it works, only worked for 2 months after I finished last time, marker started to rise again after that, so likely having caelyx too will give a better chance of success...

Miriam

fendweller profile image
fendweller in reply to bamboo89

Miriam , I was worried about caelyx too but feel more reasured now , I hope your appointment is the news you want , if not ,the fight goes on .Cheryl x

bamboo89 profile image
bamboo89 in reply to fendweller

I don't think it will be good news, all I'm waiting for is when she thinks I need to start chemo. The question for me is, do I really want to... I have other health troubles which are now severely affecting my quality of life anyway... I suppose I'll give it a whirl, if its too awful. I'll just stop. But I really wish Hammersmith hadn't moved all the chemo over to Charing Cross hospital, its a lot further away from me and a lot more expensive in cab fares. Travel for chemo last time was easy - it was during the first lockdown, barely any traffic, so quick journeys. Good luck with your treatment, let us know how it goes...

Miriam

fendweller profile image
fendweller in reply to bamboo89

Thank you ,sending love.xx

Everhope profile image
Everhope in reply to bamboo89

Gosh Miriam I can empathise with you. I am coping with carbo/caelyx, hard but doable, in spite of having had emergency surgery for a hernia in the middle of it. My oncologist has mentioned perhaps putting me on niraparib next & that terrifies me!! I live alone, being widowed 12 years ago. One of my daughters lives in US & the other lives an hour away & they are always worried. I am beginning to wonder how long more I continue with all this strong medication, particularly as I have really bad osteoarthritis. I have a wonderful oncologist whom I trust completely & will be guided by her. She knows how I feel about quality of life. Best of luck with your next appointment - everything crossed for 3 of us.Kathy

bamboo89 profile image
bamboo89 in reply to Everhope

Thanks - I have osteo arthritis too, in the spine and my neck's particularly bad now. I have to admit, it all got significantly worse after chemotherapy. And since chemo, been diagnosed osteoporotic, and an MRI done 3 months back showed further deterioration of the spine from the arthritis... and 3 of my teeth started crumbling and had to be extracted. I kind of wish I didn't know about all the deterioration, makes me feel like I'm literally crumbling and will one day sink to the floor because my bones won't hold me up😳🌝 All this was why I was reluctant to have chemo at all. I will have to consider carefully whether I want more, but maybe for palliative reasons it might be useful, depends how I progress I suppose. I, too, live alone...

As for niraparib, yea, I was terrified to take it too, mostly in case I had an allergic reaction .. took me 6 days to pluck up the courage to swallow one, but it was okay, so I took the recommended 2 tabs after 3 days when I didn't display any allergic reaction, so I think you should give it a go... you can always stop if its awful. I think if I hadn't taken it, on and off though it was, I would have needed more chemo sooner...

Pretty amazing you had surgery in midst of chemo and got through it - I hope it worked well and resolved the issue. I have a huge incisional hernia, its about 9 inches long by about 6 inches wide, not repaired because no one, including me, thought it was worth it with Stage 4b cancer, it would have taken me 6 months to a year before I could do anything vaguely strenuous afterwards, and its so big, its much less dangerous than a small one.

Good luck with the rest of your treatment...

Miriam

FlowerRose profile image
FlowerRose in reply to bamboo89

Oh Miriam! What a journey you're on! I'm certain all my separate health issues after chemo are related to chemo. Nerve damage in arms thanks to bone spurs and scoliosis is neck (ok the scoliosis is old), tendonitis in hip that came from nothing at all, on and on. I've done one line of chemo and on parps, but sometimes I have to think about what I would do if I recur and if my body can't handle this again. I am 52, but genuinely feel much older. I mean, I'm glad to be alive at all but one or two more recurrences and I'm going to have to consider quality of life much more thoroughly. Sigh.

bamboo89 profile image
bamboo89 in reply to FlowerRose

52! So young to be having these problems... I consider myself lucky in that I was 67, almost 68 at diagnosis, though I'd obviously had the cancer for quite some time, since it was late stage by that point. None of it's fun, is it, not for any of us... I can't be the only one who loathes and detests hospital treatment and medication... I always hoped I'd never get cancer, largely because of the ongoing and frequent necessity for treatment/hospital attendance. I seem to have spent the last three years attending medical appointments, and I'm sure that's true for most of us on here.

Still, we have to play the cards we're dealt, don't we.. and try to live in the present and make the best of it. Never been very good at that myself🤭🤗

Miriam

Carbo caelyx strong chemo hormone tablets mixed.

Hi Cheryl,

I was thinking about this on my walk just now. I'm not sure what your situation is but I will be living with cancer ( hopefully off and on rather than just on ) for the rest of my life. I see the job of the oncologist to give me options which lead to longest quantity with best possible quality. Therefore my question for your oncologist would be this. If I follow either of the two options does the other option exist as next line.? If one of the two options precludes the other in the future I may be inclined to try the option that gave me most future choices..not sure I'm explaining myself so for example

If having the chemo option means I couldn't access hormone treatment in future I would probably try hormone treatment first .

If there is no difference in future options would go for the one with best known efficacy.

I am on caelyx/ carbo at moment. At midpoint it had held cancer stable but not shrunk it ( so I'm really hoping it's really started to kick ass second half). I have thinned hair but not Lost it, not too bad re ulcers( touchwood), skin ok ( touchwood). Main hit has been to my bloods which has led on last cycle to reduction. I do get nausea and have been sick in first week last cycle (5) and very, very tired first week as it's gone on but get better in next 3 weeks. Best of luck in whatever you decide , Sara xxx

fendweller profile image
fendweller in reply to SASSY196

What you've said makes perfect sense I'm putting it on my list for oncologist. Your experience of carbo/ caelyx doesn't sound bad . Wishing you luck with second half and hoping it really kicks ass .Thank you .Cheryl x

SASSY196 profile image
SASSY196 in reply to fendweller

Not too bad, better than carbo/ taxol. Good luck

Ive had 8 cycles of carbo/caelyx and found it fairly easy. Only problem I had was feeling queasy for about 10 days, not actually sick though. My hair has thinned a lot but it never really recovered from carbo/paclitaxel.

Hormone blockers didn't get rid of my cancer, only reduced it very slightly, but Letrozole kept it stable for 2 years, & Exemestane kept it stable for 1 year.

Hi Fendweller,

As others have said, Carbo/Caelyx a bit more tolerable than Carbo/Taxol.

I'm about to have 4th cycle of Carbo/Caelyx for first recurrence. The 3 lesions on my liver have shrunk to the extent that my Onc. described it as currently 'no activity' (of disease).

Carbo/Caelyx is every 4 weeks instead of every three weeks, so you get longer to feel better between cycles. I feel crook from day 2 or 3 through to day 10 or 11 then start feeling better. So you get a good 2.5-3 weeks feeling near normal.

I had an allergic reaction on 3rd cycle , from the carboplatin, so treatment stopped and completed a couple of days later... given very slowly in increments, given extra antihistamine and steroid before hand. Will be given 4th infusion slowly.

Side effects; slightly sore mouth - but not continuously, the usual fatigue - better after day 10/11, thinning hair - but not very badly, stiff hands - but better when up and moving about, some slight skin pigment changes - darker skin under my arms.

All the best, whatever you choose.

Lisa xx

Thank you Lisa for that information , really helpful , I feel a lot better about it now ,I'm going on holiday Saturday ,so I'm going to have a good holiday them come back ready to go .Your news is so good, really pleased for you ,long may it continue.Cheryl xx

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