triciad

Hi Christina,

i am no expert…Ed and Bubbles and all of the others here really know their stuff.  I just wanted to let you know that over 5 years ago, I had melanoma all over…liver, spleen, bones, lungs, etc.  My oncologist put me on Tafinlar and Mekenist (BRAF +) and those tumors just melted away!  It was amazing!

God bless you and I wish you much success with whatever treatment you choose!

Stay strong,

Tricia

Hi Don,

I just finished the yervoy/ Nivo portion of the combo. Right before my first Nivo only infusion, I developed pneumonitis. They started me on 50 mg of prednisone with a 10 mg taper each week. I was never offered an inhaler; however, I did spend the night in the hospital. I did miss the next infusion because it was just a few days after I got out of the hospital. going back next week to see doctor and decide what we will do. I will say that my last scans showed NED neck down. I have had disease throughout my body and almost 50 brain mets treated with gamma knife. I do still have a little heaviness breathing.. Looking forward to hearing what my doctor says next week.

Good luck to you. I hope you get the pneumonitis under control and can continue with the infusions.

Be well,
Tricia
Battling the Beast since 2009

Celeste,

i don"t often post;however, I've always been impressed by your knowledge and compassion.  The fact you spend so much time helping others on this board speaks volumes to your character.  You will go into this treatment with the cyber hugs and prayers from all of the people on this board.  I will keep you in my daily prayers.  You are one tough cookie, so go and be the warrior we all know you are!  God speed!

Tricia XO

Celeste,

i don"t often post;however, I've always been impressed by your knowledge and compassion.  The fact you spend so much time helping others on this board speaks volumes to your character.  You will go into this treatment with the cyber hugs and prayers from all of the people on this board.  I will keep you in my daily prayers.  You are one tough cookie, so go and be the warrior we all know you are!  God speed!

Tricia XO

Hi Vince,

I, too, have been on it since the end of June.  I was stable when I went on it. Previously, I was on Tafinlar and Mekenist for over 2 years.  It was working everywhere except my brain. I had 4 Gamma Knifes last year.  Everything looks good so far with my scans. Have you tried Tafinlar and Mekinist?  That totally saved my life.  I had it everywhere…bones, lungs, liver, etc.  Within a week of my first dose, the pain from the bone mets (severe!) disappeared.  So, if you haven't tried it already…it's worth a try.  I wish you all the best, and hope you will have success soon!

Blessings,

Tricia

P.S.  How about all of those pills every day with the BRAF Toni and mektovi…gross!    But if it works…worth it!

I am so sorry to hear about your boyfriend's quick progression.  I am not an expert by far…hopefully, others will post, too.  However, my melanoma spread all over my body (lungs, liver, spleen, bones, brain,etc.) several years ago.  They put me on Tafinlar and Mekenist because I was BRAF positive.  I was in a good deal of pain with the bone mets.  My tumors melted away after a few weeks; it was a miracle.  I've been on it ever since (3 years) on an "every other day dose."  

Please make sure your boyfriend gets tested for the BRAF gene.  You will be in my prayers!

Blessings,

Tricia

I'm so sorry to hear about this.  You are all in my prayers!

Tricia

I had bone mets in my lower spine and neck.  It was incredibly painful.  I got them while on Keytruda.  My doctor put me on Tafinlar and Mekenist. They melted away in no tie at all.  

I hope your doctor puts you on this combo.

Blessings,

Tricia

Janis,

I am so sorry to hear about Shane's condition.  My father has Alzheimer's disease. We ran into a similar situation with wandering.  I spoke to the Alzheimer's association regarding his getting up at night and safety concerns; he is very unstable and needs someone to walk behind him in his walker.  They told me to remove his bed and put the mattress on the floor.  He cannot get up from being on the ground.  It works like a charm!  He does not have the strength to get up from being so low; therefore, he goes back to sleep.

You and Shane will remain in my prayers.  You are an amazing woman, and he is so lucky to have such a caretaker!

God bless,

Tricia

Trent,

Sorry that you’ve been through so much. With all these treatments, the side effects can be brutal.. I did ipi/novo a few years ago. I did not get my last infusion due to pneumonitis. I also got adrenal insuffiency from it. And now, I do believe my thyroid is going. However, both my brain scan and my pet scan never looked better. I have had over 50 brain Mets during my battle (12 years). Thank God for Gamma knife. All of it is worth it if your chance to live keeps extending.

Anyway, sometimes when we are going through these wicked treatments. We get tired; we want to throw in the towel. I say go for that last treatment. It could be your magic bullet to kill the beast. If your doctors say yes, you should, too! God bless and God speed. Go get that beast!

All the best,
Tricia

Hi Don,
I had the chills really bad toward the end of the school year. I was wearing sweatshirts and sweaters in June! One thing, years ago, when I did a year of interferon, I bought this super warm blanket. It helped me to sleep through the chills. The blanket and some Tylenol! Maybe if you kept a warm drink (decaf) by your bed in one of those thermos cups, you could drink it if you have the chills. That helped me, too. Lots of homemade chicken soup!

The fatigue was pretty bad, too. I think the most important thing throughout this journey is to listen to your body. If you are tired, sleep. If you are hungry, eat. Etc. I did a year of interferon and worked never missing a day. I gave myself over to the interferon. I went to work, came home, cooked dinner, and went right to bed. I slept a good 12 hours a day, but I got through it. You can, too!

You can do this! Whatever it takes to kill the beast! Baby steps…one battle at a time! We are all behind you!

Blessings,
Tricia

Hi Don,

I felt pretty awful while on the combo when they added Tafinlar to the mix. I had been on Tafinlar/Mekenist for over 2 years without many problems. Honestly, I think feeling crappy is the new normal for me. However, my liver enzymes were high, so I couldn’t take any Tylenol. I also can’t take any aspirin or Other pain medication because of the brain mets (bleeding). Going through the infusions without Tylenol was brutal. I had really bad chills, headaches, and muscle aches but I couldn’t take anything…awful! The good news is my liver enzymes are down so I can take Tylenol if I need it. I did work throughout the treatments (teacher), which I think helps get through the day…love my job and my class!

I really wish my doctor put me on the inhaler. I hate being on these steroids!

Best of luck. Always remember you are not alone. I always picture all the names from this board as I go through my infusions. So much love, support, and knowledge here that I feel like everyone is there with me fighting the beast!

Thanks to everyone! Don, go get the beast!!!

Tricia

Yes, they have stayed away.  I have had a few brain mets, but they were zapped with gamma knife.

Yes, they have stayed away.  I have had a few brain mets, but they were zapped with gamma knife.

Don't wait until next week.  Call your oncologist and have them call you in a prescription for a steroid cream.  It's a side effect of the medicine they have you on.  They should know what to prescribe.  Always get ahead of it; waiting can get you into trouble…call now!

Good luck and feel better!