Please share experience with chemo
October 20, 2019 at 3:45 pm #15091
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<button class=”btn btn-primary btn-sm” type=”button”>Reply</button><button id=”likeButton” class=”btn btn-secondary btn-sm post-action post-action–like” disabled=”disabled” type=”button”> Like (0)</button><button class=”dropdown-toggle btn btn-actions btn-md” type=”button” aria-haspopup=”true” aria-expanded=”false”><span class=””>More</span></button>October 21, 2019 at 12:03 pm #15095
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!October 24, 2019 at 11:57 pm #15101
October 27, 2019 at 10:06 pm #15107
- 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.
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 2October 30, 2019 at 4:55 pm #15112
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.February 6, 2020 at 6:34 am #15349
I came to the forum this morning looking for help as to whether or not we should be seeking a second opinion for my husband.
He was diagnosed with the cancer in January 2019 and has since been through the stent inserted twice, blood clots on his lungs, sepsis and 8 cycles of Gem/Cis. The tumour has now been stable for the last 3 scans. When first diagnosed, he was borderline for an operation, however, at the time he was so poorly the surgeons would not operate and at the next scan they said they could not operate as the tumour had moved slightly in to the portal vein. We accepted this and I can now see that despite us pressing for the operation he probably wouldn’t have survived it at that time.
He is now reasonably well, has gained weight and despite general nausea doing really well.
I have researched and found a surgeon who operates when people have been told their cancer is inoperable. I feel I have to at least make an appointment to see this surgeon and I would like to thank everyone who has posted regarding getting a second opinion. You sometimes feel that you shouldn’t be going against what you have been told by the team who have been amazing in keeping my husband alive so far, but I feel that if I don’t go down this route I am not giving my husband a chance that he may possibly have.
At a time like this you sometimes feel isolated and wonder where to go for help. Thank you all for taking the time to share your experiences on this forum and thank you AMMF for making this available for us.
Frost21February 11, 2020 at 5:43 am #15367
It is relief that your husband is doing well right now. Well, it is right that going for the second opinion is always good when the first opinion doesn’t work. I’m happy that you went with the second opinion and got the second chance where your husband survived.
Thanks for sharing your story here. I’m really inspired by your story that we should never lose hope!March 1, 2020 at 3:30 pm #15457
Thank you for all the replies.
Steve has had no treatment yet and is still doing fine, living life just the same as before 7 months since diagnosis, with minor pains that he takes paracetamol for.
We have searched so many second opinions, i possibly wrote to (and got replies) all CC specialists in the UK.
He’s been offered two clinical trials but both involves chemo and he is still undecided.
We’re using alternative treatments and would love to just stick to that if we see his cancer is not progressing.
At the moment however hes blood test results are worsening a little so that difficult decision is still to make.
All the best to everyoneMarch 8, 2020 at 9:25 am #15472
I know the beginning of this post was some time ago, but just thought I’d stick my experience down for you.
Chemotherapy, single handedly the toughest experience I’ve ever had to go through. Heavy fatigue from the start, quite a lot of hair thinning(so that was shaved off), psychologically draining(I felt sick as soon as I walked into the chemo suite), I’ve got a slight tingle in my feet due to the central nervous system being affected by the Cis, and then most importantly to myself, I felt as though it has taken my manhood, I was no longer aloud to work (I drive 44tn lorries, so safety first)
Having said that bit, I’m now eight cycles of cis/gem and two cycles of cap/gem with two more to go and two scans showing stability. I believe the chemo has extended my life expectancy and given me time to fight on further and see my son take his first steps. My goal is to take him to his first day at school, which is a few years off yet.
I’d always go for the potentially life saving/extending treatments if it stands a chance at helping me.
My Dr wants to give me an eight week break from treatment after cycle 12 and that makes me very very nervous.
After that I’m self funding a treatment called Sirt to try and shrink the tumours in my liver (theres around 13 of them). Supposedly it’s highly effective!
I’ve found an absolutely invaluable friend in America who has been on Infragratinib and living with this cancer for the best part of two years, not only that, has supported me so much in conversation since my diagnosis in July 2019.
All I’m saying is that there is hope in treatments. Be willing, no matter how tough because life is so precious and valuable.
Sorry to ramble 🙃
Keep smiling and never give up.
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