Fed up!

just back from my appointment to see where my ca125 is upto. I was ned at the end of March CA125 beginning of June of 600 and slight thickening of my Diaphram so agreed to check CA125 three weeks later its now 1060 so CARBO/GEM to start very soon! I knew the it would return but not so quickly a year would have been nice without treatment. I know a lot of you lovelies have had this treatment any tips I was really good on CARBO/Taxol just wondering if this one is any easier or does that depend on the person? My hubby looking for a quick getaway for us next week before chemo starts. I'm also sick of upsetting everyone, my girls my husband and friends and family are all upset again this disease is sick if I could meet it face to face it wouldn't dare come back again

oh well onwards and upwards xx

24 Replies

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  • Oh Alison well I can totally relate as you know from my recent posts! I've never been able to manage a year between treatments either and as you say - would be a tremendous bonus!

    I've not had that combination but I know of many ladies that have who I'm sure will be giving you their advice. I'm having carbo / taxol again as has been 2 years since I had that before - my oncologist believes will work just as well as before so I trust him. This disease is a total b.....d but we just have to put a smile on our faces and fight the fight again!

    If they offer you a picc line do take it - my arm feels totally back to normal now! Good luck with your treatment xxx

  • yeah I think the picc line is going to be a must because you have 6 sessions and 6 sessions in between so that's 12 veins urgh

    xx

  • Oh lordy well yes take that picc if they offer it! Enjoy your break away - will be hopefully a good mind and body leveller before we battle the beast again! !! Xx

  • Hi, so sorry to read that you're going on the chemo journey again, I can't share any experiences as I'm only going through chemo myself now since being diagnosed in March. I just wanted you to know that Ive read your post and am sure you will soon have replies re the change of chemo. I hope you have a fab time away and am sending hugs to you and your family

    Clare x

  • Thanks for the message Clare! I hope the rest of your treatment goes well and you have full remission!! good luck sending you hugs back xx

  • My mum is just coming to the end of carbo/gem. She found it a walk in the park compared to carbo/taxol (I know, easy for me to say!). Her hair has thinned a little, but no need to cover up, she has felt a little queasier than before, and she has bruised more easily. Overall, she has not been floored as she was with carbo/taxol. Should say, due to her pre-existing health, she was never given day 8 of gem, so just had day 1 every 21 days.

    Good luck !

  • Hi Meboo thanks for your reply! that's a little comforting that it hasn't been as bad as the taxol. I'm glad your mum is nearly done with her chemo!

    take care xx

  • Hi I know how you feel I got 5 months before treatment again and I am just coming to the end of my 18 weekly taxol, I really hope I get a bit more free time without treatment this time!

    Wishing you all the best on chemo and hope this regime is a bit easier for you

    Karen

    X

  • Thanks Karen yeah I hope this time you've kicked it that hard it never dares to return

    Take care xx

  • Let us know how you are doing and thank you x

  • Yeah will do thank u n u keep posting xx

  • Will do xx

  • I had this combon back in 2010/11. I didnt find it as bad as first line treatment only had one bad sicky day. Your hair may thin towards the end. It is fairly manageable but make sure you dont get too constipated. Get equipped with prunes in juice carrs water biscuits or ginger nuts for the bad day. If you didnt fare too badly on carbo taxol then this one should be a bit better. I had Gem and Avastin in 2013 this was harder as I got Gem on the eight day. For some reason, this was tough enough or maybe I was getting older. Anyhow I wish you well with the treatment and we are all here for you to answer any questions you may have,

  • Thanks Suzuki! I'm having the top up on day 8 too xx

  • Oh Alison, I'm so sorry to hear you have had such a short time NED, It can't be easy knowing the little bugger is back, but you've sorted it once so no reason why you can't do it again. I wish you well,

    Mandy, cx

  • I finished carbo gem end March.

    Didn't find it too bad at all, except for feeling even more time eaten up by trips to the hospital because of the day 8.

    Generally felt well, but, big but, it often has a big impact on your bloods, so be prepared. I had two blood transfusions for the haemoglobin and felt like a new woman afterwards. I also used G-CSF injections from the off for the WBC. I'd had problems with both previous lines so it was anticipated I'd need them. But the way I had them - a couple of days between days 1 and 8 and then again later in the cycle - was much more tolerable than a run of 5-10 days which produced horrible bone pain.

    We're all different and you may have stronger blood!

    My hair has thinned, though it's been quite a gentle, slow process- still happening a bit, but I only notice it when I wash my hair and there's a little clump in the plug-hole. So I've been washing my hair a lot less often.

    Good luck with it! xx

  • Thank you Mac27 xx

  • Hello

    Sorry to hear your news, I am in a similar boat, finished treatment in Dec 15 and been on the increase since, with marker slightly rising, although it shot up from 300 to 1125 in 5 weeks, had a scan yesterday and wait the results, my belly has started swelling again, so unfortunately I think I will be on the chemo band wagon again soon, want to try to get through the summer if I can without chemo, fingers crossed, but yes take yourself on holiday and have a blast xx

  • Hi Leeds thanks for your reply I'm sorry that you are in the same boat as me! I was hoping to get through the summer as July is my birthday month and I have a lot planned so wanted to do them things without being treated but I think I will be on chemo before then.

    have a nice week and keep in touch

  • Hi Alison I've had this twice now, as I reacted to Carbo. I have to say I found it slightly (I emphasize slightly) tougher than Carbo. The one bit of advice I would say is make sure you get the right anti sickness in place. Having said all that, both times I went back to NED within three doses (although I completed all 6 to make sure). Hope it works well for you. Sending you a hug. Kathy xxx

  • HI Kathy thanks for the response that's great news that you went straight back to NED hope it does the same for me

    have a nice weekend x

  • I have been on this regime for my 1st recurrence. I'm having more difficulties with this than carbo/taxol. I have little to no energy. So far one of my chemo's has been pushed back a week. It's the low blood counts that are doing me in. I'm trying to decide if the bone pain is worse than no energy. With carbo/taxol I was down for a couple days with the pain. With Gemzar/carbo, I don't have the bone pain, but the lack of energy goes on for days. I had to recently make the decision to work part time. I just don't have the stamina to work 8 hours.

  • My wife had this for third line chemo and found it reasonably tolerable and we were always nipping away for 3-4 day breaks . In fact she had an extra two lots of it because if was working so well for her.

    As you know, and the replies suggest.....it's the toss of a coin decision on if it's an easy ish or tough ish regime for each person, fingers crossed that you get a good response and it's very tolerable.

  • Good morning the husband thank you so much for taking time to reply to me! I have just read your profile and would like to say I think you are amazing Christina must have been very proud of you and how sorry I am for your loss of her

    Take care xx

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