You are here
Abdominal issues and sleep
Categories:
Yes increased gas and wind is very common on TKI. It can also cause pockets of pain in the abdomen from time to time and sometimes persists longer than other bouts. In fact I’ve just realised that since I’ve been taking a daily Berroca and 4000IU of Vit D (5 months) I’ve not noticed any at all! I do have times of feeling full too but that passed a year or 2 ago. I don’t get the pounding heart but palpitations now and again. No more than before I started TKI though. Hot flushes I have had before but nothing that persisted. I think a lot of these things iron themselves out and other ones draw there heads. An example I’ve been on TKI for 3 years and the last year I awake everyday with the driest of mouths that my tongue sticks to the roof of my mouth. That has to be TKI as it’s not something I had until now.
Berroca is just a multivitamin mainly B vits which help with energy. I was suffering from quite a bit of fatigue and I tried everything to curb it and I think they do help a little. Not sure if my fatigue was/is TKI or just the lockdowns as I’ve read many articles of people feeling more tired during the pandemic
Thank you for the information. I will check on this. I do take a Complex B daily. That does help, I think. The fatigue is an ongoing problem. Some good days, some not so. Maybe the pandemic is partially to blame, although we live on a farm and I have been keeping my usual pace throughout the pandemic, including 3 miles a day on my stationary bike.
Thanks again.
SD: I'm recently diagnosed with CML (October 2021) and have been taking 100mg of Sprycel daily. I have been having the same symptoms and came upon your comment when searching for answers. Were you able to find any help with the hot flashes and heart pounding side effects? Any help would be appreciated.
You are newly diagnosed. That first year of meds for me (Sept 2019-2020) was very unpleasant. I take imatinib. I had a full body rash for 6 weeks. Daily nausea. Lost my eyebrows and other body hair. The hair on my head became very thin. I developed holes in my finger nails. I had mouth ulcers for 2 months.
Finally, after a year things got better. The hair loss has stopped. I consulted my stylist for products to make my hair less dry and fuller.
I take biotin for my nails.
The rash has not reappeared.
The nausea comes occasionally. I manage it with compazine which I have available as needed.
I have a bottle of Magic Mouthwash to use as needed...although I only have occasional mouth ulcers.
The hot flashes and heart pounding have also subsided, although I still get them once or twice a month. I usually get up, use the bathroom, make sure I have on light weight night clothes (sometimes I change right then). I might also need some nausea meds. Then I lie down again with a cool wet washcloth on my forehead. Sometimes I also run the washcloth down my arms.
I have found that a good quiet bedtime routine helps me relax. I have a snack, then read for about an hour. I also practice mindful meditation and have a prayer routine. I sometimes use prayer and self talk to calm down when the heart pounding starts. It can be quite frightening. I think that the meds contributed to the heart pounding and hot flashes, but I was also learning to live with a chronic illness, and my fear of dying. So I think there could have been some panic mixed in with all of this. The meditation and prayer have helped very much with this fear.
What has helped tremendously is that my CML has been nearly undetectable since December 2020. So I was able to convince the oncologist to let me take a half dose of imatinib since June 2021. That has helped with decreasing the side effects of the drug. And my lab numbers are still excellent.
I hope some of this information will help you.
I would say to hang in there. Once you get past the first year, things usually get better. And you will learn to manage your symptoms.