Hi everybody, my husband was diagnosed in February with stage 4 PC, liver and lung mets. He was told there were no treatment options as he became so poorly so quickly.
However, recently he has stabilised a little and it’s now been agreed he can start chemo in a few weeks. He is starting Gemcap. Is there anyone in the group who wouldn’t mind sharing their experiences, what it’s like and what to expect with him in term of side effects and whether there is anything I could do/get to ease them?
I know it is hard to answer but how much extra time might this give him? We were told 2-6 months without treatment, he is almost at 4 months now. Thank you so much for any help and advice x
I am sorry to hear the news of your husband's diagnosis. I have been around PC forums for about six years and what I have learned is that PC is very variable in people and reactions to chemo can be very varied. The Gemcap regime is relatively new. Six years ago my husband was on Gemcitabine on its own. He had no real side effects but, I'm afraid, it didn't make any difference to him and growth of the tumour.
Unfortunately, it is impossible to know how much extra time chemo might give. Even the most experienced doctor can only go by 'averages'.
However, if your husband is keen to have chemo the best thing is to try it and see what side effects it has. He can always stop if they are not good.
My other piece of advice having been in your situation is to enjoy each day as best you can. Simple things can bring real pleasure.
I'm sorry to hear about your husband. My Dad had pancreatic cancer and I found reading the posts in this group very helpful and so I still check in every now and again.
Unfortunately, my Dad passed away at the beginning of April but he fought for 18 months. He had the whipple procedure and then 6 months of chemo, where Doctors then said that it had spread to the liver and spleen, so he was offered palliative chemo, which at that point I think he was given approximately 12 months. In January, he was told that the palliative chemo had not worked and that it had spread to the lungs. Chemo was withdrawn and my Dad was really upset about that, as he just wanted every possible chance to extend his life. However, in February he had the call of an offer to take part in a clinical trial. He accepted this offer straight away and spent pretty much all of March having rigorous testing. He was accepted onto the trial but unfortunately passed away 2 days after starting treatment (the cause of death was due to a blood clot that was found during the testing process, nothing to do with the drugs, given or the trial) but I think the trial just came too late for him.
I guess what I'm trying to say is that, for my Dad and for us as a family, having the option of something that could extend life was something that felt like a lifeline. A chink of light in a very dark tunnel. Towards the end of my Dad's life, he became so, so tired very quickly so this type of cancer can be so unpredictable for different people. The fact that you say that your husband has stabilised to the point where he can now have chemo when it wasn't offered before is good.
Everybody is different in the way that they respond to treatment. My Dad seemed to cope with chemo extremely well. For others that may not be the case. My Dad was told 12 months with treatment and he passed after 9 months (with the treatment having not been successful for him.)
I'm not sure how helpful my reply will have been to you. I suppose that when I see a post like this where there is a bit of hope, it takes me back to our experience as a family and I understand all of the different emotions that you and your husband must be feeling, so I felt an overwhelming urge to reply.
Take care and remember that you can always come here for support. The people in this group are amazing and even though I didn't start messaging on here for a very long time, I always read posts and they were inspirational. Xx
Hi. I've just joined this website. I had gemcap last year for pancreatic cancer. I felt fine for the first six weeks then got more tired as the 6 month course went on. But if I had a 1-2hour nap in the afternoon I was still able to go out and about and walk the dog for 1-2hours. I had some taste changes and slight nausea but are little and often, sometimes odd combinations of food, but maintained my weight. People I met out and about didn't think I could be having chemotherapy as I looked too well. I'd say try it and see what side effects he gets. He doesn't have to continue if he feels unwell. Sending best wishes x
I’m sorry to read of your husband’s diagnosis - not sure how helpful this’ll be but happy to share my experience of chemo which was started last September, after an op to remove my pancreas due to a mass blocking my bile duct. This mass turned out to be stage 2 cancer although it hadn’t spread to lymph nodes etc the oncologist recommended 6 months chemo which was Gemcap.
I was given loads of information about potential side effects, ranging from cracked, dry skin on hands and feet to sickness to hair loss. I was given dexamethosone before having the chemo infusion plus some metaclopromide intravenously which helped with sickness. The dexa is a steroid so I had loads of energy for 24-48 hours after the IV but also caused some insomnia.
Loads of meds were prescribed to counteract side effects - I used to take them as soon as I felt off-colour and consequently my experience wasn’t as scary as anticipated. I did lose some hair but didn’t totally lose it - I only combed it once a day and washed it once a week.
hope this is helpful and that your husband’s treatment goes well for you to have quality time together.