Hi everyone I'm new here, but I'm so grateful to have you. My twin sister has melanoma cancer, stage 3, braf positive.
Her treatment started 3 month ago, but now she's struggling with the side effects: pain in her legs and hands. She is walking hard because she doesn't feel her feet.
Please help us, because she's worried about this. Monday we are going to make an EMG, now has some medicine for this: GABARAN, but doesn't help her very much.
Has anyone similar experience?
Thanks for your support and also I will pray for you.
Hi wolfstefy
I'm sorry to read that your twin sister is suffering from severe side effects while on dabrafenib and trametinib (dab/tram).
There are lots of people in the group who are on this drug combination and I hope one of them will come forward if they have suffered similar side effects. In the meantime you could search for previous posts on this topic by using the search function at the top of the page.
Macmillan's information on dabrafenib and trametinib does mention problems with hands and feet and recommends that you "Tell your doctor or nurse about any changes to your hands or feet. They can give you advice and prescribe creams to improve any symptoms you have." I presume that your sister has done this.
While you're waiting for replies, it would be great if you could pop something about your sister's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
Hi Wolfstefy I’m sorry to hear your sister is in pain with her hands and legs with taking the tram and dab pills .i also had very painful hands but more my feet when I walked ..please tell your sister it will go as quickly as it came (mine was off and on for 4 weeks ) i got strong pain killers from the cancer doctor that really helped .I was BRAF stage 3C melanoma and have been on the pills for 11 months and my last scan came back all clear .your sister is doing amazing getting through 3 months of this tough journey .please keep supporting her all u can so your sister can keep fighting and having the treatment .i know she will feel she’s got months to go like I did but I’m on my last month now before u know it .sending big hugs to both of you x
Hi Wolfstefy,
Sorry to hear about your sister :(
Would you be able to tell me where the melanoma has spread to class it as Grade 3? Was she offered surgery as an option as well?
My partner was also Stage 3 last summer (Braf pos) with spread to 1-2 of his groin lymph nodes. We were told that he just needed surgery to remove them with no mention of any drug therapies before or after. We waited about 5 months for the lymph node removal however unfortunately during that time it managed to spread to his brain so now he’s stage IV. I wish we had been offered quicker treatment and the option of dam/tram which may have changed this outcome. Or it may not of. Who knows with this damn disease…
He’s doing really well on immunotherapy though and has had CyberKnife on the brain mets so staying really positive that he’s going to respond to everything we’re throwing at it.
Hope your sister is doing better & drugs manage to keep everything under control! <3
Hi, and first of all I want to thank you for sharing your experience.
Yes, she passed over an lymph operation in December last year and 12 nodes from 25 were with metastases, but thanks to God there isn't spread in her body.
Even we are living in Romania the doctors moves very fast and started the treatment in January. Everything is under control, but I'm sorry for her because has pains and she doesn't feel her feet.
I wish you all the best !
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