Help/Advice please on choice of treatment

Had four treatments of carbo/taxol for primary peritoneal cancer. Op on 24 October to debulk. Removal of omentum and ovaries. CT scan hadn't shown full extent of cancer so removal of more not possible. Had carbo on its own last week, now have to decide whether to have carbo/gemcitabine to finish chemo sessions for this first line, then check later, or finish carbo and start on Avastin if possible. This would go on for months and has possible frightening side effects (but don't they all). Either way a CT scan will be scheduled for end of Jan 2012. Have read what I can and am leaning towards Avastin, but does anyone have any input?

Bit difficult trying to write this as Mrs Brown (our cat) insists on leaning on mouse!

12 Replies

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  • Hi Lucy

    I too have PPC (rare) after being diagnosed with OC stage 3, during surgery to remove ovaries (already had uterus removed) they discovered ovaries were fine.Had 6 treatments of carbo/taxol last year without too many problems, got the all clear last December but it has come back - as it can do. Having bad reactions to carbo this time so they are continuing with taxol on its own because mid term scan showed that the taxol seems to be working. Cant help with the other chemos you mention, there does seem to be a vast range of treatments available out there or as my oncologist said "there is always a plan B". What we need is more research to prevent this awful disease recurring.

    Hope your treatment goes well, whatever you decide to go with, let us know how things are. Hows Mrs Brown?

    take care

    Harley

  • Thanks Harley

    I am always in a quandary when there are decisions like this to be made. I suppose I want the oncologist to make the decision and say 'this will be the best for you' but I know it isn't like that. Does pull my mood down though.

    My ovaries were fine also, I expect they were taken out just in case.

    Good luck with your treatment, and we will both work towards our 'plan B' working.

    Take care, and God bless, from me and Mrs Brown (who is a lovable nuisance!).

  • Hi Lucy,

    Sorry to hear of your dilemma - but give me Avastin any time. I have just gone off it after being on trials here in Spain for almost 3 years. The CA125 is rising and I have fluid in the bowels, so a change of treatment is necessary. I never say what treatment I want. I trust my Oncologist has the skill to say to me which is the best, he did that with Avastin. I was given months to live in Jan 2009 and I am still here today. I will list you the chemos I have been on so you will see there are plenty of bullets out there for you yet.

    Avastin does have a few side effects but thankfully it doesn't kill the good cells. I am hoping my new regime will work and I can soon be back on my Avastin.

    l

    Dec 6th 2006/March 2007 Carboplatin/Paclitaxol

    Sept 2007/ Jan 2008 Paclitaxol/Gemcitibane

    May 2008 Caelyx through to

    Sept 2008 Topotecan through to

    Jan 2009/ June 2011 Avastin/Cyclophosmide

    June 2011 Avastin/Carboplatin

    Dec1 2011 Cisplatin/Gemcitibane

    Anna xx

    PS wonderful name for a cat !!

  • Hi Lucy,

    I finished my first course of carbo/taxol in September, and am having Avastin. It does make me feel a bit sick (but no where near as sick as the carbo/taxol did), and I did have the nose bleed from hell as my platelets were down to double figures and ended up in Casualty in the summer, but it seems to suit me. I asked my Oncologist if I was his wife/daughter, what would he want them to have, and this was the regimen he said.

    I too have problems typing due to our cat (Gizmo) insisting on my typing arm.

    Good luck, and hope all goes well.

    Love Sally.

  • Thank you Anna and Sally for your replies.

    I must say Anna you have really tried a few different things and to recommend Avastin does give me confidence, and the fact that Sally says it does not make her feel as sick as carbo/taxol is another plus. I shall have to watch the nosebleeds as it is one of my side effects when on chemo, but not too bad.

    I see the onc on Wed so will probably get a consent form to sign, but don't know when treatment will start. Hopefully after Christmas.

    Hope you have sun and blue skies in Spain Anna. My sister is in Portugal at moment and texts me about the good weather, not that I am a bit jealous!

    Will keep you all in the picture when treatment starts.

    Love to you both. Take care.

  • Hi Sally,

    Can I ask how you are getting hold of Avastin? I assume you are in the UK - private or NHS?

    Many thanks.

    Lizzie

    X

  • Lucy, the Avastin gave me NO sickness at all, the reverse, I felt wonderful on it. What caused the problems were the daily chemo tabs I had to take they were a killer for joint pain.

    The side effects I got from my Avastin were like a continual sinus infection but without the pain. For that I have to clean my nose every evening and use a gel up it to stop it drying out. It has also given me a husky voice,sexy some people say, but it does mean I can't sing along to my favourite songs any more. Avastin to me has been my life saver and I only hope when we get through the patch I am going through at the mo, I will be back on it again. It can also cause perforation of the bowel, but on the trials my Oncologist is running, no one has suffered that.

    Lovely weather here, we sat outside in the sun on Sat and had lunch in the Puerto where we live. Sometimes we actually have to pinch ourselves that we live in a beautiful climate. On the other hand when it rains, it rains !!

    Good luck on Wed and keep us posted re your treatment.

    I will just copy and paste what I put on my Avastin thread. I have had a rough couple of months and my Onc. thinks I was either sensitive to the Carboplatin and Avastin or had fluid in the bowel, but tonight results were good news.

    We can celebrate Xmas - yippee. I went with some trepidation for my results tonight to be told there is no fluid or blockage within the bowels. Despite my cancer marker rising there is minute shrinkage in one of the tumours and my Dr thinks I have definitely been suffering sensitivity to the last chemo regime. She is however suggesting I talk with The Prof about a possible Gastroscopy, as 2 out of the 3 bad sessions when I was sick, it was very dark. Chemo can cause bleeding to the stomach and with all the chemo I have had, she would like it checked. Unfortunately here in Spain Drs and hospitals do not work hand in hand together to I have to be careful how I approach The Prof with this question.

    A suggestion is to take an extra stomach protector a day, wait until after Xmas and if he agrees go ahead with one. Why the CA 125 is still rising is a mystery. Although she has one patient with a CA125 of 3,000 and no cancer at all - strange isn't it.

    I am so lucky to have her support, she has worked in Oncology so has more info for me than maybe another GP who hasn't experienced that side of medicine. I don't have the back up of a support team here or the equivalent of the Macmillan Nurses

    Love Anna x

  • Hi Lucy J,

    Can I ask how you are getting hold of Avastin? I assume you are in the UK - private or NHS?

    Many thanks.

    Lizzie

    X

  • Thanks Anna.

    You are definitely giving me more confidence in Avastin. Good news about tumours shrinking - can only be good. Best wishes for talk with The Prof. I have been following your 'story' and it does give me a boost to read how you, and other ladies on this site, pick themselves up from set-backs and carry on. Although I know from experience it must be hard at times. Maybe a husky voice, coupled with my blond wig, will suit me. Oh, for some of that sunshine!

    Mrs Brown is sat next to me trying to 'knead' my leg with her pins (claws). As I say to her, I have enough of pins without her adding to it.

    Lizzie,

    I have been advised by my onc (NHS) that there may be chance either from special 'fund' or direct from drug company, for certain cases to have Avastin. Mind you, he has been wrong before. A few weeks ago he was going to put me on Caelyx, but there is a world shortage, so that is why my case is being looked at again. So I am not holding my breath, just hoping things will work out ok.

    Best wishes

  • Hi,

    When I was diagnosed three years ago I was offered avastin alongside taxol/carbo as part of a trial as I had clear cell. As I was only stage1c, i was on the borderline for treatment on the trial- only my aggressive cell type got me the offer.

    In the end, I didn't go ahead because i didn't think the benefits outweighed side effects in my case at the time. The other reason was that a lady at my oncology clinic had a bowel perforation on avastin, requiring surgery and a long recovery and this put me off.

    However, when i asked the consultant he said this was the first perforation he had dealt with in a couple of years using avastin and that everyone was different and most people had minimal side effects. I think if my cancer comes back I would consider it if offered. Good luck with whatever you decide.

    Polly xx

  • Hello Ladies

    Just to let you know that yesterday (Wed) I saw 'my' oncologist and signed a consent form for Avastin, which starts the Wednesday after Christmas. I would have been disappointed not to be able to eat a Christmas dinner!

    This first lot will be given with carbo, then the rest will be Avastin on its own as maintenance treatment for at least 12 months. I was told it probably would not shrink the cancer but would keep it under control.

    Again, I suppose I am being pesimistic but as all the paperwork has not been done yet via NHS, I am aware things may change.

    Love and best wishes for a Happy Christmas to all.

  • how is it treating you?

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