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Caelyx or Gemzar

Hello Lovely ladies hope you are all as well as can be expected. I have been on avastin a maintenance since June this year but my CA 125s were increasing I had another ct scan. my lowest ca 125 was 181 and it had gone up to 395 while on avastin with my last reading 310. I was never NED but they have seen disease progression. They are planning to discontinue with avastin and offered me either Caelyx 4 weekly or Gemzar weekly for 3 weeks consecutively. Has anyone any positive outcomes on these drugs or negative as its good to know both. The onc said as I am feeling completely well with alots of energy I have a few weeks to decide I am going to a private clinic next week for an opinion on another dr on an immunotherapy drug there are problems re the funding of it. I feel so well its so horrible the thought of it again. I am now considered platinum resistant as I recurred within 6 months.I am still taking all natural products and feel optimistic about the next course of action. I'm open to all options or opinions you can share .Thank you in advance Clare xxx

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Hi Clare,

I recurred when my CA125 went up to 427 having been on Avastin. It crept up slowly over about 10 months - I was on watch and wait. I am now having Caelyx with Carboplatin, so not quite the same as you as I’m still platinum sensitive. I have found the regime quite hard and my CA125 went up to 722 to start with, but now my CT is showing response including the demise of a number of lung nodules which had started to grow. Only one left now apparently.

I think you are right to explore all possibilities, but I’m feeling positive now that this treatment is right for me. The downside is that I feel out of sorts for about 10 days and I get frustrated with not being able to do what I want!

You have, like I did, the luxury of having a bit of time to make a decision so plenty of time for research.

Good luck and best wishes, Ali x

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Hi Ali thank you for your reply Oh I can relate to that and been out of sorts for ten days is very tough I am 3 small kids under 10 and our house is so busy which i love and it keeps me going but I rem when on carbo/taxol I was sick 3/4 days a month and it was a horrible feeling, did you have taste problems or local allergic rash, or any hairloss, I found loosing my eyebrows worse than scalp hair. I am glad its working out sell for you know long may it last. did you have to have liquid piriton or steroids with the regime. Thanks again Clare xxx

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Well Clare, I have the benefit of being retired, so I can recover in my own time. I have no idea how I would cope if I was in your position, although I remember the fun and love and chaos of having young children!

I’ve had no hair loss, although I was told that it would thin. I’ve had none of the possible skin problems either. I don’t have Piriton but they give me IV steroids before the infusion. I then have Dexamethasone steroids from the following day - 3 a day for three days. Because I was having some dizziness and nausea I have a tablet called Akynzeo an hour before chemo - it lasts for up to five days. I also take an anti-sickness drug called motilium after three days if I need to. Constipation is a problem, I take sodium docusate and Movicol from the day before chemo until I’m happy everything is working properly!

Some things taste odd and I do lose my appetite for a few days, iced water works for me. Sorry, I’ve rambled, but I hope it helps a bit.

Best wishes to you, love Ali x

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Hi Clare

I don’t know anything about caelyx but when I recurred in January just 7 months after I had finished my chemo and still on Avastin maintenance my Ca125 was around 259 and scan showed up something. I was then given cistoplatin and Gemzar every second week for 6mths. Now it’s ok and back to normal and I’m back on Avastin since last week hoping and praying that there won’t be another reoccurrence. Not sure if that’s any help to you. I didn’t lose my hair this time. They said it might thin a bit but apart from a few strands around sink in morning there wasn’t much of a change. The side effects were pretty similar to carbo/taxol that I had last year but just a bit more tiredness and very little energy for the first 6/7 days.

Before I returned to the Avastin I was given the option of going forward for a clinical trial in the royal marsden for but I chose to stick with what I know as we have had enough upheaval in our family this year so I couldn’t face have treatment anywhere else just now. Maybe you could ask your oncologist about this too.

Good luck with your decision making. It’s hard to know what to do but you’ll make the right one that fits for you and your family.

Antoinette

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Hi Antoinette thanks for your reply. I can understand your decision not to do the trial its so hard travelling for treatment I live in Ireland in Limerick and will have to travel to Dublin for the private clinic which will mean if i have any success on getting the drug up there I will have to attend that hospital at least every 3 weeks excluding testing and consultations. Did you have any adverse reactions to Gem or did you need steroids or liquid piriton it is good news no major hairloss. Had you similar taste problems as carbo/taxol, I hope your good health now will continue for you and Ca 125s stay down, Many Thanks Clare xx

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Hi Clare

No didn’t have any adverse reactions on Gemzar. I had steroids for days 1,2, 3 and 4 and then I’d eat all around me for 5,6 & 7 and then some.

I’m in Dublin so if you need any help/advice getting to/from clinic just let me know. What clinic/hospital is it if you don’t mind me asking. Is it Beacon by any chance as that’s where I go and I live close to it. I know from my onc that some patients are getting immunotherapy treatment there. So let me know if I can do anything for you.

Take care. A

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Is this St Vincent's Private that are getting the immunotherapy I have an appointment there next week its my biggest hope to get on immunotherapy. It has been shut down as an option in Limerick...

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Hi coksd

I'm in Limerick also. I'm waiting for results of ct scan to confirm if I have a second recurrence, thankfully I'm still platinum sensitive but have been diagnosed with the brca 2 gene, I didn't realise that immunotheray was not possible to receive in Limerick, what type of therapy specifically are you referring to, I wish you best of luck in Dublin, sorry you have to travel to receive treatment that should be administered in your locality.

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Hi I'm under prof G in limerick and I asked him about probrolizumab immunuotherapy and he said its not available I also asked about niraparib and he said no he basically said Caelyx or Gemzar was all he would offer at this time. I have mild ascites in my stomach and I asked him about managing that he said its not bad so just watch and wait. He also said their are no trials available only ICONB8 for newly diagnosed patients its the same drugs just administered weekly. During the summer when one of his reg's attended to me when I was in for avastin he had just moved down from St James' and he said the probrolizumab is occasionally used so I don't really know tbh. Thank you for your reply I agree its hard enough to have to go for treatment besides having to travel good luck with your scan results. Clare xxx

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Sorry forgot to mention yes did have taste problems. Similar to carbo/taxol with metallic taste from day 1. Hard boiled sweets would help.

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how you doing? xx

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Hi Jools, I’m good. Have had two Avastin so far and all the little side effects starting to kick back in. Hard going when I was just starting to see an improvement in my energy since chemo finished at end of July so need to. E kind to myself and slowly build it all up again. On hols at moment but weather not great. Hopefully it will improve and a little bit of sunshine will ease my achy joints.

How are you doing?

A

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Not bad! On no: 20 off avastin feeling nervous ca125 up to 180! Sharp pains today just 🙏 what next! Trying hard not to focus on it to much, sometimes I think it’s going to disappear 😂 wishful thinking, it would be good to think just keep treating it and you will survive or a miracle cure will come! Ranting on at mo but always hopeful, where are you I’m in Kent! 😘

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Hi Toni, I’m going on cisplatin ! I’ve always been able to go yo work on chemo. Is it possible on cisplatin? Hope your feeling good & looking forward to a great Christmas xxx

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Hi Jool53 I had 2 infusions of cisplatin only the first one was a bit of a shock to the system I had no sickness but just very tired they gave me emend for 3 days for anti-sickness this is very effective I had my first infusion on a Friday 2 weeks ago and it was the following Wednesday before I was ok to drive and go out but I had my second 2 days ago and I feel great. The only thing I did differently was I had reflexology Thursday morning. Take care Clare xx

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Why could you not drive? Do you think I will be ok for work? I’ve never not had time off! Done carbo/taxol, carbo/gemza and 23 avastin! Hoping I can function as well again! Constipation was a problem taste body aches etc but I kept on going!🙏

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I just felt too tired and was sleepy they had given me valoid for anti-sickness too so think they can make you sleepy so this time I am using motilium with emend but the emend is the most effective. I had no issues on avastin I was on it during the summer and had loads of energy, when on Carbo/taxol I would of had a few bad days each infusion. How often are they planning to give you cisplatin I am every two weeks. I have a long day in the hospital as they give me fluids to hydrate the kidneys and measure my urine output then the cisplatin goes in over two hours then a post kidney flush so about 5 hours altogether depending on how fast the bloods get back. Im glad I went with this option my local hospital in Limerick wouldn't do it so going to Dublin.

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Omg a long process! I’m not sure yet meeting in a couple weeks looking at starting end January when I get back from my cruise/getting married 🙏 so praying like mad I can hold off until then! Ca125 130 🙏 xx

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Go enjoy your wedding and cruise my CA125 was 875 and I feel totally fine think I am a high reader I'm going on my second holiday of the year next weekend just to London, I went from 21st Sept to 18th November with no treatment just eating raw ginger, lots of green raw veg smoothies a bit of cbd paste . my lowest ca 125 after front line was 181 I went to majorca for a week and was totally fine. best wishes xxx

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Did you have pain? I’m getting twinges where the cancer is but try to ignore! Stupid me🤪

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Hi Jools53

Good luck with the cistoplatin. I’m sure you will be fine. Everyone reacts differently and it all depends on your type of work. I worked in a boys school so it was too risky to work and have chemo and risk infections. Have been off since last January. Was planning on going back after Christmas but really not ready. My head is like a box of frogs some days. Decided my health was more important. So pushed it out till after Easter. I’m in Dublin.

Best of luck with the wedding and enjoy your cruise.

X

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Thanks Toni! Just trying to keep it under wraps! Don’t want others knowing! Just my family, of that makes sense xxx

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Hi Clare, I have had quite a bit of Caelyx single and also with Carbo Caelyx this gave me good results, but we all react differently to chemo ,The Caelyx was hard at times but manageable.

Caelyx is a slow release drug it can go up before it comes down, type in the seachunlocked Caelyx and you will find previous post about Caelyx,

Good luck with your decision hope it gives you good results..Take care Lorraine xx

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Thanks Lorraine that is good to know its the side effects mentioned that is so daunting its good to hear positive stories . I have an appointment next Wednesday in Dublin so feel hopeful. I hope you are doing well too. Big Hugs Clare xxx

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Hi Clare

No it’s in the Beacon hospital but as far as I know it’s in James hospital too and I’m sure other places. MSD are the company that either brought it in here or started it. Fingers crossed it will all go well and you will get on it. You have a great positive outlook so that half the battle. Take care. A

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Hi Clare,

I've had three infusions of Caelyx. I'll know mid-October if it has reduced my liver mets. If it has, we'll look into trials, if it hasn't, we'll continue with another three infusions. So, I can't give you an outcome yet.

I will say that this year, having carbo/gem and Caelyx, it's the Caelyx that has been the kindest to my body. I have extreme fatigue, but none of the bone pain I had with my first line of carbo/taxol in 2016. I have mild mouth and throat sores but nothing I can't handle. A rinse of baking soda and water seem to help.

The oncologists stopped the carbo/gem because of blood clots caused by the liver cancer. Otherwise I think I could have handled it.

Good luck making your choice and keep us posted.

XXOO

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Hi Nancy Thank you for your reply that is good to hear that there were no adverse reactions to the caelyx as the patient information handout they gave me was a bit daunting saying it changed skin pigmentation and foot and mouth syndrome with redness on the soles and palms. I think they gave me the wrong handout as this is for the capsule's of caelyx and I rang them earlier the CNS said no it would be IV I would receive. its good to hear that the bone pain isn't bad either I hope you get good results. best wishes Clare xxx

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I was told all that also, and some women have had these experiences but not me. Perhaps they'll come as I go further into treatment. Who knows?

The oncologist said several times to moisturize my body, especially hands (palms) and feet. I've been doing so.

And there's something nice about having treatment once a month.

Keep us posted as to what you decide.

Best wishes,

XXOO

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I have had Gemzar and Carbo and then in 2013 had Gem again with Avastin both times I did get a good response. We are doing the Parps up here in Cork so cant see why they are not available in Limerick. The last regime kept me going until April this year, when I had to go for that hard radiotherapy. My next plan is Carbo and then a parp. Scan a few weeks ago showed stable. They actually sent me for bloods tho methinks they should have been done post radiotherapy as I was as pale and tired. I don't know if taking bloods during a bad sinus infection and on antibiotics is a good idea. Anyhow we will see.

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Hi Joan thank you for your reply. I asked the prof if I could have niraparib he said no I wouldn't be able to and wouldn't give a reason he just said as I haven't been tested for a mutation gene that I wouldn't qualify for orlaparib, I asked was there any other options other than chemotherapy he said no, and I am now considered platinum resistant, I finished chemotherapy on 6th April that was my last carbo/taxol and avastin didn't work too well my scan showed it was starting to affect my kidneys and also low level of ascites and with a rising CA 125 they decided to take me off it. From your experience is there any other parb inhibitors that can be taken? I also asked about letrozole and tamoxifen he said I was too young. Hope you get good blood results, and are feeling better Thanks Clare

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