I have tried putting a post on this site twice in the last two days without any success, am trying again. I am not used to doing this and must be doing something wrong. I replied re the outcome of my visit to the consultant but I sent this to one of you instead of to you all. Am waiting for a date to have some chemo going to try carboplatin if this does not help probably try taxol. What a bl..dy awful disease. Love to all Jean.

11 Replies

  • Hi Jean, I am completely with you on this. I started weekly Taxol 2 weeks ago as recurred too early to have Carboplatin again which worked well with Gemcitabine last time so hang in there and hope it works for you. I am distressed with ascites and leg lymphodema, being drained on Monday. Last drain 2weeks ago drained lymph & Doc was planning permanent drain but says it would have blocked it was so thick. I am trying to keep positive and hope the taxol works. I know it will be slower but it's very hard when I feel so awful and can't walk far. Thinking of you and wishing you all the best. Sue x

  • Thanks for your kind thoughts. Hopefully will get a date to start chemo this coming week. Love Jean

  • Hello Jean, bless you. You're right, it is a bloody awful desease but despite our understandable occasional lapses into despair we are a hardy bunch of ladies on here!! I find this site offers a great deal of support, so keep posting!! As far as the treatment is concerned, the fact you've been stable for a long time bodes well as you are hopefully still platinum sensitive. So there's a good chance Carboplatin will work again. 😀 Can you ask if you can have it in combination with another drug?

    Regarding the problems posting, I've typed long posts in the past then pressed the wrong button and it's all disappeared!! I've also replied to one person instead of all too. To make sure you add a reply to the main post, either click the black 'reply' button immediately after it or scroll down right to the bottom of the replies and click the black button there. The orange 'reply' button is to respond to an individual reply to the main post. Either way after typing your text make sure you press the (orange) 'submit reply' button. Don't know if that clarifies or confuses things even more and you probably know this anyway but it might help to remind me to press the right button too hehe.

    Anyway, keep us updated one way or another.

    Much love M.B. X

  • I will certainly ask about the possibility of having a combination with the carbo. Love Jean

  • Hi Jean - your post worked! These online forums do take a bit of getting used to but once you're more confident I'm sure you'll enjoy posting, adding comments to threads and perhaps even sending Private Messages which you can do to one individual or a group.

    I hope you can get the ascites sorted out.

    Sending love xx Annie

  • I'm glad you succeeded in posting to us all at last. Hope your ascites gets sorted out. You're right, it's a bummer of a disease and we need to support each other.

  • Hi Jeany, hope you have good results with the carboplatin. Sending a big hug. Ann xO

  • Ooh ghastly ascites , without doubt ...over the last four and a half years , since original diagnosis , I have had five " bouts" of drainage , usually about five litres a time . Apart from the feeling that you are overdue with quads , the ascites / cancer cells draw down nutrients from your system which is another reason you feel awful . On one occasion , I begged the oncologist to get rid of the stuff....we did a fifty / fifty ....took one lot off for comfort ( it was in two , separate cavities ) and the Cisplatin did the rest eventually . The fluid did go ....

    Since then , I have been on weekly taxol , ( then caelyx ( bad reaction ) , then re introduced carbo ( bad reaction ) , lots of Cisplatin this year , tumours reduced and now on a break ! Object have a rest physically and mentally .

    Have had long weekend in Paris , will go to Lake Como in October , all being well. CTscan in November / December unless wretched in which case l will shout for help . I am so sorry that You are going through this crap , which is what it is ....but , as ,written by others , many of us are surviving much longer than hitherto has been the case . Onward and upward ! Day by day ...Che Sera , Sera ...many a cliché gets me by ( and out of bed !) Enjoy the beautiful day .

  • Like you I find the fluid the bug bear but fortunately I have a permanent drain fitted which is great as when I get bloated and drain it off. Hope the chemo helps to reduce this. We live in hope. Love Jean

  • Dear Jean do you mind me asking what were the criteria that decided that I them to put in a permanent drain? I am so terrifified that the ascites has returned after less than 3 weeks when they drained another 6.5. I am on 3 week on taxol 1 week off. I fear it's not working (2nd cycle) if the ascites is recurring so quickly.

    My husband has developed a uti whichaffects his emotional state. I feel at the end of my tether as its Xmas day and trying to play it all down. He's on antibiotics and I feel he needs Th attention for a change. My daughter wants to help but I am a very private person and don't want to involve her in this level although I have now told her exactly how it is and she's got other family members at hers.

    determined not to make a drama out of this just because it's Xmas day.

    trusting that this is totally confidential an anonymous but it is good to get it off my chest. I feel like I've got no fight left in me

    It would be so good to get some words of hope and encouragement

  • It was fitted instead of having to go in to have it drained. It is so much easier .I drain once a week. I am on carboplatin one more to go and am still having to drain. Like you I was worried but oncologist says scan shows static disease so I am hopeful. I know it is very hard to cope and I keep a lot from my family but keep strong and positive .Love Jean xx

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