› Forums › General Melanoma Community › Dabrafenib/Trametinib SIDE-EFFECTS….Help….
- This topic has 5 replies, 5 voices, and was last updated 4 years, 10 months ago by
Nympha.
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- June 7, 2019 at 12:15 pm
Dear all:Much has happened that last 5 years and I am starting just a few weeks back, as the story might get to long for you.
Sorry, E is not my mother tongue and I live in Asia, but with access to good medical services.
Had full LN-Dissection right Axilla about 2 years back and was on Opdivo for 30 x biweekly. Short break since last October 2018 and
despite good PET results and further tests in January 2019 was brought to emergency room with terrible lower abdominal pain about
12 weeks ago. Emergency Laparotomy and removal of large 7 x 7 x 7 cm tumor and part of small intestines.
NOW B-RAF V600-K from B-RAF neg. originally.
10 days after surgery we started full dose BRAF/MEK with Dabrafenib/Trametinib. First 2 months-in PET shows promising results with all lesions
in liver, spleen, lung.Side-effects first 3 weeks were acceptable, light rash allover, tired, confused, nausea etc. But into week 4 and 5 the rash got dramatic, fevers more frequent, total
exhaustion, vomiting, occ. diarrhea and eventually during that week we had to interrupt treatment for 3 days, as I collapsed and was admitted to get better, which
they managed within 4 days. Got on low dose Prednis for 6 days only.
Then re-start and since rash hast almost disappeared. Still once or twice daily low-grade fever, which I control with a small dose of Paracetamol Syrup. Still some nausea
and just overall feeling very! ill.My main question today is: I am a very active guy with a demanding job and I got literally shut down from 200 miles/hr. to 5 miles/hr overnight 2 months ago. I feel brutally exhausted 24/7.
Can hardly manage to get up and go inspect some work on foot most days. I used to walk 12 miles a day easily, today down to a crawl, even so I force myself not to show. Force myself
to eat, but little appetite. Hard to keep weight.
Real sleep only 4 or 5 hours night.
I see less and less sense in my life like this, even so I have caring people around me. But is this gonna be my life until the meds stop work anyway?Any general or specific thoughts and experiences very much appreciated.
Have a nice day and all the very best to all of you, thank you. “Homeless”
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- June 7, 2019 at 8:37 pm
That combo can be crazy difficult, but my experience is that it does get more manageable and predictable. It does sound like you should talk to the doc about going on a lower dose.-
- June 8, 2019 at 8:35 pm
I would agree with JulieT that talking to DR. about dose reduction could be very helpful.At full dose of the combo i had many symptoms you describe and for me it was best to go on lower dose. I am NED and have heard other stories of people who became NED on lower doses of the DAB/MECK combo.I wish you all the best with your continued treatment.
Northern Son -
- June 9, 2019 at 11:36 am
Thank you Julie & Northern Son. After my admission 2 weeks ago, caused probably by a combination of side-effects, total exhaustion, hardly any food or fluid for days / I am an idiot and waited too long to act, despite medical knowledge, I recovered rather fast. So we decided to stay with the full dose for the moment. The horrendous rash is now 95% gone, slight itch and extremely dry skin stays. Hand & Foot problems improved. Nausea and fever under control, dizziness & extreme fatigue very hard to overcome. Still just feel ill & sick most hours. Wow, with hot-spots in liver, lung, spleen and colon I can really use the hope you give me. I have completely directed my life to prepare for the end and organize all for my family & friends. After 5 years of fighting and 8 surgeries I am just a bit tired….:-(
I will try to stay in touch and post any changes. Thank you everybody for caring. Have a nice Sunday and all the Best. “homeless” -
- June 9, 2019 at 1:55 pm
My husband had the high fever flu-like symptoms in the first 5 weeks and was hospitalized. When he restarted the meds a couple weeks later he was dose reduced and now is practically asymptomatic. He works full time and has still had great scans (42% cancer reduction, then another 20%). There is hope to feel good and Dr. said that dose reducing doesn’t reduce effectiveness, some people just don’t need the full amount. Blessings to you as you continue.
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- June 11, 2019 at 6:12 am
Hello there!
My father has been taking this meds for 6 months.
He spends some time in hospital with fevers, and terrible freeze shivering..
He is weak, and also he is not able to walk long time and stay active for the whole day.. But its getting better and better everyday.
You have to addapt to this treatment, take your time, do not try to work hard and be very active.. Staying active is ok, but also save your energy, relax..
I am very tired when take antibiotics.. This treatment is very effective, and kills cancer very fast, and it requires a lot of your energy.. I know its frustrating, I try to keep my father positive too.. My father had a lot of tumors in his skin.. A lot of bumps and balls, he was unable to walk, cancer appeared in his lungs too.. Imunotherapy didn’t work for him. After this treatment his lungs are clear (after 3 months) and his skin is nearly clear too..
Stay positive and relax more. Your body deserves it, because it fights now a lot and needs energy for the fight. Not for hobbies :o)
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