Lymph nodes

[NewtonEmma1900]

I have peritoneal/ovarian cancer. Diagnosed October 2021. Have had 1st line chemo (carbo/taxol and avastin) and debulking surgery. Then I had 3 cycles of avastin; Due to CA125 rising rapidly I had a PET scan which shows cancer in the lymph nodes. This weeks avastin was cancelled and I am now waiting to start caelyx. Do any of you lovely ladies have any experience of this?

[soyoon]

Calyx didn't work for me. Only 30% of patients respond statistically. Another issue is that even if it works, you almost have to finish 6 cycles before you know if it is working; it is peggylated, a some sort of coating, whch releases the drug itself more slowly.

[organicinna in reply to soyoon]

They told me 14% respond but its only last no more than 8 month....I did respond so far . CT scan after 3 rounds was positive. One more round left mid August. Will see what CT will show after that.

[soyoon in reply to organicinna]

I am sure it will continue to work for you.

[organicinna in reply to soyoon]

Very kind of you xx

[Caleda4]

Hello there, I am on carbo/caelyx and finish with 6th cycle in August. Fortunately it is working for me,as I started beginning of April with lymph nodes near aorta and smaller ones in other places, but my CA125 was 232 when I started, and after the 4 cycle it is down to 13 which I am really pleased about. I think maybe it varies person to person. My Oncologist said that caelyx has a double edge sword. I am 77 so older than you. I hope it works well for you. Take care.x

[NewtonEmma1900 in reply to Caleda4]

Thank you for replying ‘Caleda’. My CA125 was 128 at round 4 after surgery it was 400/424 since the it has risen to 778. I have not had any treatment for almost a month so am keeping my 🤞that it works. You too x

[Lizzieanne in reply to Caleda4]

Thinking about you last night this is great news so pleased for you. I have PET scan in August and see onco!ogist in Sept. Have had no treatment since beginning of January where low activity was diagnosed. I know we spoke before about different treatments as weekly taxol has been suggested but will ask about caelyx. Keep well x

[Caleda4 in reply to Lizzieanne]

I have thought of you recently and wondered how you are. I will keep my fingers crossed regarding your pet scan in August. I think you need a rest from both chemo and other drugs as it does your body good. In actual fact I was surprised to learn that my CA125 had gone down to 13. On the whole I have found carbo/caelyx ok. I did however feel more tired for a couple of days from day 4 after this recent cycle. This morning though I have walked along the river,as it is so warm,and I am sure it did me good. The next Consultation I have with my Oncologist is the 18 August,so not really sure at this point if he has any idea if I will be on watch and wait or something else. I have said that I will ask for a second opinion with the Professor in Manchester,just to see if he has any ideas. The trains are easier to Manchester than London and the hospital from there is not far. Enjoy the rest of your day.x

[bamboo89 in reply to Caleda4]

What did your oncologist mean when he said Caelyx was a 'double edged sword', in what way is it that?

[Caleda4 in reply to bamboo89]

I believe he meant that some people get away with minimal side effects whereas others suffer more.

[bamboo89 in reply to Caleda4]

Surely not, I mean, that is true of any chemotherapy or drug, not just Caelyx. Perhaps he meant its more than usually damaging to neutrophils, but I'm curious as to what he actually meant.

[organicinna in reply to Caleda4]

Am suffering MORE with Caelyx but so far they said its working. One tiny tumor even disappeared they said completely, which is hard to believe really . May be it wasn't tumor in the first place LOL. I often think they just kidding me I have OC )))

[thejoannabell in reply to organicinna]

Sometimes I think the same thing!😊Especially when biopsies or scans seem kind of inconclusive.

[organicinna in reply to thejoannabell]

its all conspiracy ! LOL

[organicinna in reply to bamboo89]

I wanted to ask the same )))

[bperr173 in reply to Caleda4]

My mom is 79 soon to turn 80. She has been battling head and back cancer stage 4 that spread to lungs. She was doing Keytruda then taxotere then the pill exlodus and she now has tumors in her abdomen and the ones in her lungs are growing. She starts Taxol/carbo on Dec 20th. I'm just looking for any info on how to help her and any tips on what we can do if she gets really sick? Any advice is greatly appreciated!

[Caleda4 in reply to bperr173]

So sorry to hear about your mum,sometimes this disease is sole destroying. I sincerely hope that the carbo /taxol works for her.You will need to speak with your mum's team should she get very sick. Take care,and try to stay as positive as you can,which I know is very difficult.x

[NewtonEmma1900 in reply to Caleda4]

I was just wondering how you were getting on Caleda since you finished caelyx? What drug did you go onto? How are you feeling? I had just had round 5 of 6 . Had some side effects but not too bad, my CA 125 is down to 9 but I am wondering what next. I have a telephone appt on Tuesday so maybe he will have some thoughts. To be honest though I feel he is so busy he only looks at my notes when I get to appts. ( not his fault - just maxed out)

[Caleda4 in reply to NewtonEmma1900]

Hi, I am on watch and wait until February,unless I have a hint of anything beforehand. I had a second opinion with Prof Jayson in Manchester,and he agreed that watch and wait was the way to go. Fortunately I feel really well at the moment. I did feel particularly tired after round 6 of carbo /caelyx, but after a couple of weeks felt fine. I hope you get on alright with the last round.Have a lovely Xmas.x

[Caleda4]

Forgot to add that also my Oncologist told me that for me it had 70% chance of working.

[organicinna in reply to Caleda4]

See some oncologist saying 70%, some 30, mine said 14 % )))

[mrstadpole]

I only had 4 lots of caelyx/carbo as it was during Covid and my oncologist didn't want me to come to the hospital.Thankfully it worked and then I was put onto Olaparib.

[Realistic]

I had carbo & taxol 6 nine hr sessions it was hard going but worth it my CA125 was in the thousands but wasn't until ld completed the chemo that it dropped completely to 9 its now16 but lve been NED ever since and apart from complicated hernia lm absolutely fine. So l think

you need to have all your sessions to see if its really worked so good luck. Good luck & big hugs

Sheila Fxxx