Dympsd

Good stuff. Wishing you every success

MIke wishing you the very best. Your posts are always inspirational, You have made my journey with my husband a little easier so thank you so much and keep fighting big lad!

This breaks my heart. You are so amazing in all you have done from back when you were girlfriend to fiancé to Wife. I’m sure your husband feels super lucky to have you battling for him every step. I wish you both the very best and want so much for him to make another comeback. We all feel a little of your pain and want the best for you both. Xo

My stage IV husband is on this combo. After stopping and starting due to fever and vomiting his new unbearable side effect is knee pain and loss of power and ability to move left knee. It isn't progression of brain tumors as CT showed the tumors were getting smaller for last two scans YEOOO! His pain is off the charts though now on vicodin/Ibprof and we are afraid as he has liver tumors and elevated enzymes.No relief but paused therapy again. Now back on reduced dose 3 tabs Braftovi am and two tabs with one in evening of MEK. Hoping he can tolerate this as CT shows it is working.It seems that my husbands DRs bring him to the point he can no longer bear symptoms, stop for a break and restart. He isn't getting a great amount of relief in between but at least breaking up the worst of the symptoms gives the medication a chance to work. Wishing you the very best and some great pain free days. It is very hard on everyone

I think u need to request a copy of that CT and have a Dr read it STAT. Otherwise it’s just guessing. Go with the facts and believe me there is will be plenty of time to stress after diagnosis so for now just be super active and utilize that anxious energy to get result of CT.

Thats awful. My husband went from a small mole removal in 2011 to Multiple brain, liver, kidney, neck, bone tumors this november, total shock. I can imagine your fear and frustration. Seriously though I was on this forum as "Desperate" a few weeks back as my husband was deteriorating rapidly, dragging left side  then unable to walk and eventually in wheelchair with left sided neglect, drowsy and confused to being fully self caring, alert orientated and happy. Initially he had 14 brain tumors then gained another 7 in two months.The "miracle" all happened after we switched thrapy from Keytruda infusions to BRAF and MEK targeted therapy. It has really been a miraculous transformation and one I never thought was a possibility but I was wrong. Hope is alive and you have to know you have great medicines around now. My husband had a large boil like melanoma on his neck that the dermatologist decided to leave as he thought it would be a good "window" to see how he was reacting to medicaition and after two days my husband already noticed it was smaller and now after two weeks its gone. good luck to you. One day at a time xo

HI Shelly, unfortunately my husband just found out he has 20 more new brain mets on top of the ones he already had.II was reluctant to do the WBR but because he was having multiple seizures after first week of combination immunotherapy they felt that this was necessary. Partly because he progressed so quickly ( tumors new since August) and because of his condition we are doing the radiation this week. I was very apprehensive and discussed this with radiation oncologist after reading about WBR. She actually reassured me somewhat. She said that she felt the radiation can help stall tumor progression and said that the brain tumor burden while serious is not usually the cause for patients with extra cerebral tumors to succumb to melanoma. That the body tumors were most fatal. It has been such a crazy week for us. Seizure medication doubled and an additional one added, plus dexamethasone and Memantine ( drug to help prevent demetia/neuro decline) . I have read the literature and listened to the podcasts but have to believe that the treatment plan sometimes has to be tailored to the individual in the moment in accordance to symptoms and necessity. I wish you every success.Hopefully the cyber knife will still be an option unfortunately it seems it is not for us.

Did u ever form a group for the Brain Mets IV? How can I join?

My husband is stage IV has had surgery, cyberknife then immunotherapy which did not help as tumor spread. Started Bref/Mek January. Has had pretty awful side effects with temperatures, vomiting and joint pain so reduced to half dose for 4 weeks. Repeat brain MRI has shown tumor shrinking ( assuming his liver, pancreas and kidney ones are too) starting back on full dose this week again with good indication that the suffering has been worth it and hoping for more progress. Good luck to you

Amazing! Love hearing good feedback

Listen to Celeste but if may add to absolutely ask your oncologist about supplements. I of course raced out to get the curcumin and was told absolutely no capsule but a sprinkle on food would be ok as it’s hard on the liver. My husband was also told not even to take Tylenol at this point in targeted therapy as his liver enzymes are so elevated and they have stopped his therapy. Wish you the best of health and recovery.

THats great news. We too have had amazing resuts. Last week I was Desperate but this week I am back to being so hopeful. The Braf/Mek combo has helped my husband out of his wheelchair again and now he no longer has left sided weakness. He looks and feels so much better its a huge relief from finding out there were more brain tumors 2 weeks ago to the recovery he has had this week. Thank you for all the encouraging words