Please share experience with chemo

Discussion Forum Discussion Forum Patients and experiences Please share experience with chemo

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  • #15091

    stevie
    Participant

    My boyfriend Steve has bile duct cancer that spread to the liver and peritonium.

    His been offered the standard chemotherapy treatment Gemcitabine/Cisplatine.

    We haven’t decided what to do.

    Please share with us if you had this treatment has it reduced the tumor?

    How were the side effects?

    Has it increased the life expectancy?

    If you decided not to have chemo how are things going without it?

    Thanks so much

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    #15095

    HelenT
    Participant

    Hi Stevie – sorry to hear about your boyfriend’s diagnosis.

    I am a long-time bile duct cancer patient and have been around the houses with all kinds of surgery and treatments.  Still going after 9 years but options are running low let’s say.

    In terms of chemo, everyone has to make a personal choice about whether to do it or not. You will find that you have lots of discussions about quality vs quantity and that can only be your decision.  And importantly, everyone’s response to chemo is different, so it is hard to say whether your BF will do well or not.  For the most part, side effects can be managed, particularly if you follow the nurses advice.  For me, I suffered with bad fatigue with both my chemo courses (one gem/cis and one  Folfox) and sadly there is nothing you can do about that except work with it.  In terms of whether they helped, I would have to say yes, but not in a ‘shout it out loud’ way.  The gem/cis bought me stability that enabled a second surgery, and the Folfox did give me a slight decrease – again enough to enable me to look to the next steps.

    If you are not already, I would recommend getting a second opinion at a hospital with specialised knowledge of BDC and seeing if there are any clinical trials that might be suitable.  You will probably find that you need to do gem/cis first in order to qualify for a trial, but it would probably mean that you got genetic testing of your tumour which is where the future lies.

    They key thing is to do your research – be your own advocates, don’t be afraid to ask for what you think you should have at any particular stage. The NHS is great but it is sometimes rather uncoordinated and you might need to join the dots.

    Good luck!

    #15101

    twigsie
    Participant

    Hi Stevie

    • My mom is 75 and was diagnosed in January this year, she’s been having gemcitabine and cisplatin chemo since April. She’s had various side effects but I think she’s managed brilliantly, luckily she’s not had anything too serious which was my main worry. She hasn’t lost her hair (although it has become very thin) she’s had a couple of water infections but the main symptoms she seems to keep getting is trouble sleeping and indigestion, plus recently food and drink doesn’t taste the same so she doesn’t enjoy certain foods anymore. She has two consecutive weekly chemo sessions and sees the oncologist the third week which is where she can tell them about her side effects and they’ve given her various tablets depending on her symptoms. When she had her second scan in March (the first was in Dec the previous year) the tumour had already spread. After a couple of months of chemo the next scan showed it had remained the same so we like to think that it’s at least stopped it from spreading. She’s just had another scan and gets the results next week. It’s an awful situation to be in because you just don’t know if it will be of benefit but perhaps your boyfriend could start the chemo and see how he feels and decide whether to continue after the first scan? I wish you all the luck in the world.
    #15107

    josmb
    Participant

    My husband is in his second chemo now. We are fighting against this disease since April last year. He got operated and started chemo with Capecitebine in Brazil (we were living there back then). He was in remission but then it got back on lymphnodes, bones and lung. Now here in UK he is getting Gem+Cis on NHS since May. The symptoms he is having with Gem+Cis are basically the same they described above. He is now at the end of 7th cycle so all side effects are stronger due to cumulative effect. In August the scan showed the chemo had reduced the lymphnodes, reduced the tumours he had in the lung and even worked on his bones as well. He will have a CT scan and MRI on tuesday, hopefully it will show more good progress.

    Each patient is different so it is hard to tell how your boyfriend would react (I hope my husband can live as long as Helen, who wrote above. 9 years!! Wow!!). And I agree with twigsie, I would do the chemo and see how it goes. Best wishes for you 2

    #15112

    twigsie
    Participant

    Hi Stevie

     

    Hope you and your boyfriend are doing ok. My mom got her scan results today and the tumour is ‘dormant’ at the moment. Obviously the docs think this is because of the chemo. She has no more chemo scheduled, they will do another scan in 3 months time and we will have to wait and see what happens. I saw your other post and if you haven’t already asked for second opinion please, please do. When my mom was first diagnosed she was told there was nothing that could be done. We were all ready to ask for a second opinion but the nurse had already done so and the team at the next hospital said there was a chance they could operate if the tumour could be shrunk. Unfortunately that hasn’t happened so far but she’s still here nearly a year on from the first scan. Sending you my best wishes.

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