zfishberg

Very happy for Jake! I can imagine what a mother is going thru when her child is going thru this ordeal.

Wish you and Jake all the best!

So glad for your Dad and your family! 

You are doing such a great job with your posts for others who are fighting this terrible beast.

I would like to hope that one day may be I will be able to post a similar good post about my husband.

Hi Janis!

My husband also has a lot of brain mets wight only a few in his lungs. He also had mixed response to targeted BRAF combo and even Keytruda. Some of the mets were reduced in size, some got bigger and new ones keep popping-up. I think that nobody can explain for sure why the results are mixed. It could be the speed of disease progression, "bad luck", etc. As we know there are no answers to the question of who will be a good responder versus non-responder to the targeted/immunotherapy drugs.

Currently he is on the ipi/nivo infusions – we had 2 of them so far.

He is constantly on steroids – between 4 mg and 8 mg – because of the inflammation in the brain.

Although he did not have such severe symptoms as your husband, he frequently forgets things and seems disoriented. In addition he is experiencing tremendous fatigue.

Yesterday the doctor increased the dosage of decadron to 12mg.

My husband is on ipi/nivo as well. He has been on steroids since October due to different reasons . You can find his medical history in his profile. The dosage was different at different times – from 2 mg per day to 8-10 mg per day – depending on the circumstances and symptoms.

His second infusion is on May 25. He is on 6-8 mg of decadron  per day now. 

 A low dosage of steroids should not diminish the immunotherapy effectiveness.

Consult with your doctors as well .

My suggestion is to wait until

June 5. This place is well known for treatment of melanoma .

In addition if's good to have a team that will be treating your Dad in the same place and communicating to each other.

As our experience show,  it's very important to have the correct treatment plan developed from the start and there are usually three parties involved in decision making process: oncologist,

surgeon and radiologist.

I just posted similar sad news about Greg. I was following your posts closely because both, Shane and Greg, had similar metastasis location and symptoms/ decease progression pattern.

Unfortunately, treating the brain is one of the most challenging areas in melanoma treatment.

Let them both RIP.

And l am sure that with current progression in research of new methods, clinical studies and brilliant scientists the success in melanoma treatmemt will reach higher percentage in the nearest future

My husband had a craniotomy in October of last year to remove one large lesion- about 3 cm. From the left parietal lobe.

the surgery went very well and he did not have any complications. He recovered very quickly.

He had 2 Gamma Knife procedure after that. He did experience swelling and pain after both of them and his speech  and balance were affected as well. After taking steroids all these complications went away.

He was on Taff/Mek and then on Keytruda, but the decease progressed in the brain.

Now he is on ipi/nivo – tomorrow is the second infusion.

This is our last hope to control the beast.

Hello!

you can read my husband's profile and you will see that he has multiple brain mets currently.

we are on immunotherapy and SRS currently and still have hopes.

so don't panic! With the newest drugs and good doctors he might get have good results

Hi Kerry!

Gamma Knife for 1 lesion is nothing!

my husband had 2 procedures already : 1 – to treat 10 lesions and second one – to treat 20 more.

he did developed edema after the treatments but steroids helped to combat it.