2nd recurrence. 4 chemo combos all failed. Any suggestions?

Dear Warriors

I enjoy reading the posts here. Gives me comfort, inspiration and most of all a sense of togetherness. This is the place I come to everyday

I am in my 2nd recurrence started in August 2015. CA 125 at 92. In September got Doxil single agent but after 3 infusions and doubling of CA125 after each infusion Onco changed the chemo. I was put back on carbo/gemzar which I had used for 1st recurrence. After 6 cycles my CA125 remained in the 50s and Onco said I am stable but won't ever be NED. Quite devastated and still wanting to fight more I consulted another Oncologist who suggested adding IV cyclophosphamide (Cytoxan) to gemzar. But it got worse as the CA125 kept doubling instead. Now I am not even stable. With a CA 125 of 263 I started on carbo /taxol.

Last week was to be my 2nd cycle but while the taxol was going in I fainted. Was told i was unconscious due to an allergy reaction. It was very frightening and I am so grateful to the nurses. They saved my life.

Now I am in dilemma. I have no idea what chemo to go on next. Onco suggested Alimta or Abraxane. I have been disappointed so much. I am soooo very tired. Last week the CA125 dropped 20 points which meant perhaps the 1st carbo/taxol worked but whats the point now I can't do taxol anymore.

Is there any suggestions on what to do next. So many chemo regimes all not working. I just don't see any future for me. Would appreciate any info,

Thank you. Hope you all had a lovely happy 4th July. God bless

💚 GreenSnow

15 Replies

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  • I do not know enough about chemos to advise you what to go for but I just wanted to say how sorry I am that you are going through this bad time. We are all phenomenally strong women and you will get through this. Everything always feels worse in the middle of the night. Remember you do not have to sort this on your own. Your medics will find the best options for you, it may take a little bit longer but they are the experts. You can then concentrate on being "treatment ready" physically and emotionally.

    Sending you lots of love.

    Julia x

  • Hi Julia

    Thanks for your response. Yes. You are right. I don't need to feel all alone and it's like I am the only one who decides what is the right thing to do. I am now waiting for my Onco to send me data on chemo options. After all she is the expert. Like you say I must get my body treatment ready. Thanks for making me realise this. God bless

    GreenSnow

  • Hi Greensnow - this disease is a crapper isn't it? I've just started treatment for a 3rd recurrence - carbo / taxol again as has been 2 years since I had it the first time. When I was in the unit a lady had a severe reaction to taxol - like you say nurses were on it immediately! Her infusion was stopped for a while and then restarted at a lower rate and she was fine!

    She was telling me after that this wasn't the first time this had happened bless her! So maybe you could discuss again with your team about being rechallenged? ?

    I'm sure your team will have a plan in place so try to take heart - we're all here as one fighting this bugger and supporting each other 😙.

    Please keep us posted xxx

  • Hi greensnow I am so sorry you're going through such a tough time. I'm afraid I can't help with other chemo advice, Though have you asked about Avastin which targets tumour blood vessel growth? It depends what is available in your part of the world. It is so disappointing and wearying when treatment doesn't work I know. I had 5 out of 6 carbo/caelyx for 2nd line only to find then I'd become carbo resistant which is a real worry. Now on weekly taxol and tolerating it so far but who knows for how long.

    Good luck and big hugs to you

    Madeline. X

  • Hi Greensnow,

    So sorry to read that nothing is working, I am like you, 2nd reoccurrance and been in chemo for most of 2015 but it has only held it at bay. But they still kept me going through the chemos even when my ca was doubling, waste of money and damage to me. But I have not been offered many chemos.

    Can you change hospitals or look into trials.?

    Wishing you all the best that something good happens. Trix x

  • Hi Trx

    Thanks for making me feel better. I know I am not alone in this. So many warriors here going through this dreadful disease. I am from Malaysia. Here we don't have clinical trials and medical treatment is very expensive. I can't afford drugs like Avastin or others. Depending on what my next chemo will be I may need to look for a cheaper hospital.

    Best of luck to you too. Let's pray for all of us

    GreenSnow

  • Sorry to hear what you are going through. I'm platinum resistant now and starting caelyx next week. I've been told the side effects are not as bad as the cisplatin which I've been on recently.

    I hope they find something that works for you.

    Lx

  • So sorry you are down and having a difficult time. There is a thread on the site here called 'Radical Remission' which is quite helpful - relates to a book by Kelly Turner about alternative ways to take control amazon.co.uk/Radical-Remiss... Because sometimes it's not just the chemo - changes with diet, exercise. mindfulness etc can help you on your way. Reading it made me feel more hopeful.

  • Hi Green Snow,

    I was in remission for 10 months and now I will be starting second round. Some days I'm ok and others are a different story. I definitely at this point realize this is not going to go away forever. Nothing is forever. I'm just trying to enjoy every day and not think about this horrible cancer every day. I do but keep talking to myself. I don't know where you are located but if in Arizona I really respect my doctor. You just have to put a smile on your face and keep thinking positive. I start again on July 21 and looking forward to Thanksgiving ! Have a nice evening🐞💃🏻

  • Hi Green, I wouldnt worry about not having the Taxol, the big hitter is the Carbo. I had to have Taxol removed from treatment due to peripheral neuropathy and the carbo on its own did the job. Hope you're feeling better about continuing because I think we've all probably asked the question 'whats the point' at some stage and to me the point is to knock this B*****d on the head and to have times again with my family making good memories for us all . I wish you well. Sending you a big hug. Kathy xxx

  • Hi Kathy

    Are you saying that just doing carbo worked for you? I have only heard of using carbo single agent as maintenance but not as for treatment. If so, this is renewed hope for me. Worst scenario I will just do carbo alone.

    Thanks xxxx

    GreenSnow

  • Hi Greensnow . Ive re-read my reply and forgot to add that I was also on a trial for Avastin at the same time. Sorry , my reply was misleading. Kathy xx

  • Hi.I was on carbo and Taxol. I was also what they called "sensitive" to the drug and stopped breathing.So I have to take extra pills for this before i start the chemo.I reoccurred after 10 months.I am now stable again.Hopefully longer this time.If you want to know the name of the drugs I was on,let me know.It did work.Only problem was,I gained 10 lbs..Just got it off.Feeling really good.Keeping strong.Walk 3 to 5 miles everyday to keep my immune system strong.Good luck with your progress.Lynn💙

  • Hi Lynn

    Thanks and yes I would like the name of the drug. Sometimes I think we have more knowledge than our Oncos. 😀

    Hope you get to lose weight. I too put on weight while I was on gemzar. So far I haven't gotten to lose it yet.

    GreenSnow

  • Hi.The extra drugs I had to take were Pms Dexamethasone 4mg.

    I took 5 tablets 12 hours pre chemo, then 5 more tablets 6 hours pre chemo,then 2 tablets once daily for two days after chemo.Lynn💙👍

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