› Forums › General Melanoma Community › After switch to Dabrafenib, mets are growing again
- This topic has 9 replies, 2 voices, and was last updated 10 years, 1 month ago by
Owl.
- Post
-
- March 5, 2014 at 2:11 pm
Hi everyone,
I haven't been here a lot in the last couple of months. We have been very busy with our life and melanoma has kept us busy as well.
A short summary:
In October my husbands side effects on Zelboraf got really bad: bad muscle and skin pain, foot pain, loss of weight, facial palsy…unbearable for him as he could hardly walk. After it was checked whether it is the desease or side effects causing the symptoms, he stopped taking Z beginning of November, had a 2 weeks break, very slowly he recovered
Than started Dabrafenib. During this 2 weeks break you could see the met on his neck growing again, very scary. Decreased again under Dabrafenib. Side effects were zero.
The Last picture now show that the met in the parotis area is back, already very big and causing pain.
The alternatives are not really satisfying. There is no open trial in Germany that he could do, Anti-PD1 trials are all closed. Surgery would cause total damage to the facial nerve (he had surgery before), would mean half of his face would be palsy. Doctors recommend radiation. This is what he will do next as he needs some relief from pain in the area of the ear. He will continue taking Dabrafenib as there are not new spots, so it's the assumption that it is partly still working.
We have mentioned again and again to add the Mekinist since he started Dabrafenib. It is not approved in Europe yet though you can apply for hardship case. His doctor ist not willing to do so, she says side effects in her experience can be too hard. This really confuses me because there are so many cases here who did not have any side effects at all. Maybe she is also reluctant becaus of the hardship case or because of any other regulatory issue. I am still trying to find out.
Maybe you can share your radiation experience with me under Dabrafenib, are the skin issues worse? Is it true that radiation is only possible once in one area?
Thank you for being here,
Jenny
- Replies
-
-
- March 5, 2014 at 2:53 pm
I just learned that hardship case for Mekinist is not possible if there is growth under Dabra, regulatory issued. The only option is to get the a US import of Mek, for that we would need the approval of the insurance company. We will stick to that, my husband will see his oncologist tomorrow and discuss it.
-
- March 5, 2014 at 10:32 pm
I was on Zelboraf and the side affects were almost everything you describe except I had no joint issues but others like fever, rash from neck to ankles, major fatigue, couldn't eat much, weight loss etc. After 8 weeks everything grew so they did ipi. Now I'm on the Tafinlar/Mekinist combo and the side affects are almost non existant. It's been almost 2 weeks and just a very mild rash on my arms and torso. I don't feel like it's doing anything good to the mel yet but at least the side affects so far are so mild especially compared to the zelboraf side affects it is like day to night.
As far as radiation it really depends. For example I'm supposed to start radiation to my T10 vertebrae next monday. One of the criteria the radiologist considered was I already had radiation there but that ended last July 5th. So for him the time between seemed important. Also maybe because it is bone and I will be paralyzed soon they tell me if they don't do it. So I dunno. But anyway the first radiation caused that area to become more resistant to radiation so a 2nd round of radiation will usually be stronger and may not work. For example the first was 30 gy in 10 fractions and this will be 30 gy in 5 fractions.
-
- March 6, 2014 at 6:48 am
Thank you so much! Good to hear that radiation can be repeated. This is what my husband is so concerned about, he fears it is too early and than it can't be repeated. Of course he will have to talk to the radiologist about it as well.
I hope that things will work out for you and the combo will start kicking mel very soon.
All the best, Jenny
-
- March 6, 2014 at 6:48 am
Thank you so much! Good to hear that radiation can be repeated. This is what my husband is so concerned about, he fears it is too early and than it can't be repeated. Of course he will have to talk to the radiologist about it as well.
I hope that things will work out for you and the combo will start kicking mel very soon.
All the best, Jenny
-
- March 6, 2014 at 6:48 am
Thank you so much! Good to hear that radiation can be repeated. This is what my husband is so concerned about, he fears it is too early and than it can't be repeated. Of course he will have to talk to the radiologist about it as well.
I hope that things will work out for you and the combo will start kicking mel very soon.
All the best, Jenny
-
- March 5, 2014 at 10:32 pm
I was on Zelboraf and the side affects were almost everything you describe except I had no joint issues but others like fever, rash from neck to ankles, major fatigue, couldn't eat much, weight loss etc. After 8 weeks everything grew so they did ipi. Now I'm on the Tafinlar/Mekinist combo and the side affects are almost non existant. It's been almost 2 weeks and just a very mild rash on my arms and torso. I don't feel like it's doing anything good to the mel yet but at least the side affects so far are so mild especially compared to the zelboraf side affects it is like day to night.
As far as radiation it really depends. For example I'm supposed to start radiation to my T10 vertebrae next monday. One of the criteria the radiologist considered was I already had radiation there but that ended last July 5th. So for him the time between seemed important. Also maybe because it is bone and I will be paralyzed soon they tell me if they don't do it. So I dunno. But anyway the first radiation caused that area to become more resistant to radiation so a 2nd round of radiation will usually be stronger and may not work. For example the first was 30 gy in 10 fractions and this will be 30 gy in 5 fractions.
-
- March 5, 2014 at 10:32 pm
I was on Zelboraf and the side affects were almost everything you describe except I had no joint issues but others like fever, rash from neck to ankles, major fatigue, couldn't eat much, weight loss etc. After 8 weeks everything grew so they did ipi. Now I'm on the Tafinlar/Mekinist combo and the side affects are almost non existant. It's been almost 2 weeks and just a very mild rash on my arms and torso. I don't feel like it's doing anything good to the mel yet but at least the side affects so far are so mild especially compared to the zelboraf side affects it is like day to night.
As far as radiation it really depends. For example I'm supposed to start radiation to my T10 vertebrae next monday. One of the criteria the radiologist considered was I already had radiation there but that ended last July 5th. So for him the time between seemed important. Also maybe because it is bone and I will be paralyzed soon they tell me if they don't do it. So I dunno. But anyway the first radiation caused that area to become more resistant to radiation so a 2nd round of radiation will usually be stronger and may not work. For example the first was 30 gy in 10 fractions and this will be 30 gy in 5 fractions.
-
- March 5, 2014 at 2:53 pm
I just learned that hardship case for Mekinist is not possible if there is growth under Dabra, regulatory issued. The only option is to get the a US import of Mek, for that we would need the approval of the insurance company. We will stick to that, my husband will see his oncologist tomorrow and discuss it.
-
- March 5, 2014 at 2:53 pm
I just learned that hardship case for Mekinist is not possible if there is growth under Dabra, regulatory issued. The only option is to get the a US import of Mek, for that we would need the approval of the insurance company. We will stick to that, my husband will see his oncologist tomorrow and discuss it.
-
- You must be logged in to reply to this topic.