Summer S.

It is definitely not a negative thing, and it means the medicine is doing something around your body, crossing fingers and toes it clears out all the melanoma in your body

A quick tip about rash, everybody here swears by oats bath. They run water though a bag of oats and soak themselves in the tub for a little while. It eases the pain.

Please stay super hydrated, it is crucial when you have rash. Also mentor your kidney and liver functions. Cause rash kinda dries the body of fluids.

Love,
S.

I have been taking care of my mom, she is 73 years old now, she has been stage 4 from the gate, in mid 2018.

We have seen a lot together, many things have worked and many have failed, but we keep fighting.

I know how difficult it is for caregivers and I feel the responsibility on your shoulders, and your mom is so absolutely lucky and blessed to have you around.

In my experience I have 4 pieces of advice

1. People recover at all stages, it is possible and it happens all the time
2. Doctors do not know everything
3. You can not rationalize with Melanoma, it is freaking random, and personal and chaotic. so just keep fighting until you get lucky with it, never think about the past or what you could have done better, or anticipate the future.
4. Stay well, your mom needs you well. As much as you can try to eat, sleep and take breaks.

I will keep you and your mom in my thoughts and prayers, I hope it all works out in the most wonderful way for both of you, very soon.

Love,
S.

I wish you a long long happy and healthy life

We just started Keytruda too this week , and this is great to know it worked for you, I hope we get lucky too despite all the side effects

Love,
S.

Am so so happy you are well and sound

It is 3 AM here we have been up dealing with new treatment side effects, and I read your post, and it made me smile

Take care
S.

Welcome on board, we all wish you never had to be here, but I hope you will find all the love and support you need in this community

I think you are totally making the right decision here, definitely shoot for immunotherapy, it takes longer time to work usually 3 months and sometimes even 6 month. But when it works, it works and it is sustainable.

It is great news that you are BRAF positive, you can keep the targeted therapy as a second option in your pocket to buy you time whenever needed. For us, it worked super well, with minimal side effects for 9 months. But we tried it after immunotherapy.

Stay strong my dear, I will keep you in my thoughts and prayers.

Love,
S.

I do not have a previous experience with that,

But I noticed you are now NED and that is fantastic news!

This is just awesome, and am so happy for you

Love,
S.

I am happy that (excluding the ass) everything other thing is fine,

I hope this pain resolved very soon too and I hope it goes away with all the melanoma too

Love,
S.

Mom had very similar side effects and I know how hectic it is

We always reminded ourselves that this is the drug working and doing its marvelous job for us. Targeted therapy helped us a lot for a while.

When things were absolutely intolerable dose was slightly reduced and things were more tolerable.

I hope this medicine works wonders for you

Hang- in there

Love,
S.

Mom had very similar side effects and I know how hectic it is

We always reminded ourselves that this is the drug working and doing its marvelous job for us. Targeted therapy helped us a lot for a while.

When things were absolutely intolerable dose was slightly reduced and things were more tolerable.

I hope this medicine works wonders for you

Hang- in there

Love,
S.

My mom had just had radiation on brain Mets couple of weeks ago, it went very well and all symptoms related to them like coordination issues and imbalance were resolved. She was on low steroids dose during the two weeks of the therapy, then it was reduced gradually. We did not see any side effects but significant hair loss.

I hope it works well for your dad too

Love,
S.

I am so so happy for you

I wish you a long long happy healthy life

I feel the past few months have been really roughing all of us up

With every new protocol it is 50-50% chance and when it works, it just works.

For us chemo was one of the very last options and in combination with radiotherapy it worked for a while and gave us a much needed stability and break to keep going.

I hope it works even better with you

Love,
S.

My mom had bone Mets about 10 months ago, pain seemed similar to what you described, she had trouble sitting/standing or walking for too long. It was also In pelvis and hip bones.

Anyway, our oncologist highly recommended radiotherapy, and it really worked – (yeay!)

I remember that we were recommended 10 sessions and she already started getting better by the 6th or 7th.

We found significant improvement on the first PET/CT, and there is no sign for cancer in her bones now

We are still struggling with almost every other lesion though – wish us luck :))

My mom was on a similar period of loss of appetite and weight

Shakes and soups were absolutely life saving

I also found it very useful to add whey protein to those shakes after consulting with her doctor

Here is an interesting read on that topic
https://pubmed.ncbi.nlm.nih.gov/29565716/