Bleomycin, etopocide and cisplatin

Hello everyone. I'm new to to this place. I was diagnosed with a very rare (so I was told) germ cell, yolk sac tumour in my left ovary at the end of 2006. My tumour measured 20 cms in diameter and I eventually had 11 litres of ascites fluid drained from my stomach. So much to tell but in brief, I got the rare side effect of lung fibrosis from the Blomycin, was put on a strong dose of steroids orally and intravenously for over 1 year - that caused so many awful side effects on top of those I'd experienced from chemo. I was operated on via epidural 2 years after initial chemo treatment, as my lungs couldnt take a general anaesthetic (still cant). Its been a really long, long Road and I've been through so so much but am glad I'm still here! Anyway, I wondered if there was anyone else who had received the above 3 chemo drugs? I know that the chemo course I was on was the toughest and hardest one to do ( again, what docs told me, but I knew no different at the time) and so anyone who's had any experience with these drugs would be great to share experiences with. Even better, anyone with lung fibrosis from bleomycin. :)

12 Replies

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  • Welcome to the club that no one wants to join, I am sorry that I am not much help with the drugs you mention, I am sure there will be someone who have had experience in these. If not you could give the helpline a ring on Monday and speak to the nurse use Ruth Payne

    Tel 0845 371 0554 best wishes love x G x

  • Thanks very much. Xxx

  • Welcome, Sophia! Like Gwyn, I don't know the answer to your question, but just wanted to say hello. It sounds as if you've really been through the mill. I am glad that you joined us. :-)

    Love Wendy xx

  • Hello Sophia. You have done so well under such tough conditions. Like the others I haven't had experience of any of the drugs you have been on, but just wanted to make you welcome. The site is a wealth of information and support.

    Love Suex

  • Oh thanks very much. It's so lovely to meet people who actually truly understand. Even though it's 6 years, it's always with me but sometimes I want my friends to just spontaneously ask me how I'm doing and they don't - probably cos they look at me and think 'oh she's fine now.' I'm sure you can relate to that. My brother even once said, 'oh you're alright now' but what people don't understand is that it's always there. Whether I get a niggle or a dodgy feeling in the tummy or anything at all, my brain works overtime and I panic and fret. I'm also not the kind of person to really talk about myself, I'm quite private. Thanks for responding though. :)

  • I haven't had those drugs or side effects so shouldn't be answering but just wanted to send you a hug. I thought what I've been through was hard enough. x

  • Thanks Tina. You know when I think about it all, it seems like such a dream. Ican sit there for hours going over it all and if I knew now what I would've had to endured, I'm not sure I'd have coped so well. Thanks for the hug - hug back. Xx

  • Hi, Sandra was on the cisplatin with the etopocide tablet, they call this regimen the Rotterdam. She did not have bleomycin. It required an overnight 13 hour drip of cisplatin weekly plus a pink horse tablet. Its considered to be one of the toughest and in sandra,s case she was not well enough to do the 6 cycles, she managed 5 but then developed empyema. Her pleural effussion became infected and turned to pus. She was rushed into hospital and stayed in for 7 weeks on drains and antibiotics. We know others who coped with it better and did the full course inc the tablet for nearly 12 months. After Sandra,s recovery she was in remission for about 12 months before it returned.

  • Gosh, that sounds horrible. Chemo is just poison isn't it, so effectively, it's poisoning the whole body - the good and bad bits.

    Maybe it helped that I was 24 years old, the doctors kept saying cos I was young I'd be able to cope better. I would go into hospital for 6 days and I was hooked up for 24 hours. It was awful, as they also pumped fluids through me to ensure to ensure my kidneys werent damaged. My bladder filled up fully (and I am not exaggerating) at least 8-9 times an hour - day and night. It was just horrible. I would throw up about 15/16 times a day too - which always started by a coughing fit and I lost all weight and muscle. Went down to 6.5 stone. Then after the 6 days, I'd go home for 2 weeks and then was back in for 6 days, etc,etc. Then during the 2 weeks off, I had to go back in for a shot of bleomycin on a Tuesday, on the 2nd week. Then there were blood and platelet transfusions, high temperatures and REFUSING to be taken to hospital cos I got a high temp at home! Ha ha, I was a grumpy cow I can tell you but it got me through it. I was there so much that i never wanted to go back if it wasnt for an appointment. After the chemo, I felt more comfortable there then anywhere else too. Felt people were staring at me. I fought every step of the way - became quite well known in the Marsden! Ha ha ha! That went on for 4 months and I still remember it like it was yesterday and it was 6 years ago now. Oh and thank goodness for a PIC line, as I ran out of veins!

    Then after chemo finished I was under the Royal Brompton and had to deal with steroid side effects mainly a fat, puffy face! So imagine, I was 25 years old - supposed to be in the prime of my life but yet I was this weak, skinny, frail, bald girl who a massive face and people wondered why I hated going out! I tell you, I hated those steroids too! I'm now grateful I had them cos in the long run my lungs have improved so much, but I moaned the whole way through it in the Brompton too!! Ha ha ha, got to laugh really but none of it was laughable, it was the worst experience of my life - the aftermath too. At least I'm here to tell the tale. :)

    I went back for a blood test this week and one of the ladies at the Marsden who takes blood remembered me and I didn't really her that much. She might have been the one I refused to let touch me to find veins, as she hurt me so much! Anyway, like I said, I'm glad to be here but it took years and years for me to be able to finally move on from it and accept the new me. Oh dear I appear to have waffled!

    Xxx

  • Hello Sophia, welcome to this site which I'm sure you will find a great source of support and information. I can't comment on your treatment but hopefully others can. We are all facing our own battles with the effects of the drugs and you have obviousy gone through some terrible times. The good news though is you are still with us and that gives us all hope. I had a treatment on Thursday and have my final cycle the beginning of April. This was my first line treatment having been diagnosed last August. I hope I will be still be writing on here for many years to come along with all my 'sisters'.

    Annette xxx

  • Hi Annette,

    It's horrible isnt it. Bet you're so glad to be on your final cycle of chemo too. At the beginning it seem like there's no light at the end of the tunnel but then you're in the tunnel looking at the light and then finally, you're out the other side, basking in the light.

    I truly believe in the mind being very important, it's all about swimming - whether it means you deal with it quiet and calmly or you should and scream - neither is wrong, as it's getting you through it.

    Good luck for April.

    How are you feeling with the chemo side effects?

    Sophia xx

    P.S I'm very glad I give you and whoever else hope. It's a long road with many bumps and pot holes in the road but continuing on the path is what's important. Any time you need to talk or anything, I'm really happy to try and help where I can. Xx

  • Hi Sophia

    Many thanks for responding. I've felt better since having surgery really, the chemo did it's job but the feeling of having what was left removed and being told there was only a tiny amount left in one ovary when it was removed and none in anything else they took out was amazing really. First 2 cycles were Taxol/Carbo but reactions to Taxol meant I was down to Carbo only. Unfortunately I had a slight reaction to the Carbo on it's own too but then I had the surgery anyway. Had to fight to get my last 3 cycles of Carbo. Only agreed under strict monitoring and really slowed down all the meds/chemo drugs and it worked, hence me having more last Thursday.

    I've not had bad reactions to the last 2 cycles really compared to the first 3 so thats been a bonus. Bit apprehensive about coming to the end of treatment and going into the great unknown so to speak. But at the moment I am keeping positive and hope to keep that feeling going.

    With lovely ladies like yourself on here I'm sure we'll get each other through whatever comes our way.

    Annette xxx

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