tschmith

Hi! I haven’t been on this board in a very long time. Today I decided to read a few of the posts which led me to your post. How is your mother doing? I have not had radio embolization nor any liver mets, however in 2013 I had a tumor fracture my L3. It was not possible to remove the whole tumor so they first embolized it by cutting off the blood supply. They removed as much of the tumor as they could two days later. It worked! I had many other mets so later on I did a clinical trial and after that, Keytruda. I’ve been NED since 2015.
I wish the best for your mother!
Terrie

Hey Mike! I haven't been posting for quite some time…life got in the way.  But I'm back.  My name is Terrie, Stage IV survivor.  (Probably need to update my profile.)  I had various treatments including Yervoy, but not the combo.  Yervoy had to be discontinued after 2 infusions because of Pituitary issues.  Eventually I entered a clinical trial at NIH (gene transfer).  At first it was considered a fail but I soon started Pembro and the two were a big success (so far…3 years post treatment/remission in June.) So you never know, Mike!!!!  Possibly what you have done previously will combine with ipi/Yervoy to bring the results you want and need. I'll be looking forward to hearing more.  Good Luck!  t

I'm a retired elementary teacher and also a Stage IV survivor.  I've gotten more spirit lifting comments than abrupt or negative, but that was inappropriate by any standards.  I guess she certainly doesn't beat around the bush.  I'm not sure how people can be so insensitive but we all experience it sometimes…no excuses for her though. Since it's May,  I hope your daughter's kindergarten year was okay and that this was a case of not knowing what to say (although she said it twice!!!!  Yikes…I applaud you for taking the high road!!!!)  It's almost the end of the school year (unless you have year round schooling or something?.)  Some schools will allow you to request teachers for the next year while others won't. Some will let you describe the personality that your child might work best with.  I think I would ask both the prinicipal of the school and the guidance counselor to place your child in a class where the teacher might have some experience with this type of situation in some way or at least have the personality that they feel would be a good match.  Also, the guidance counselor may have coping suggestions and groups for children in your little girl's situation. Good grief, I feel badly that you even had to answer such a difficult question. Ughhhhh I agree that it's important to let the school know because most teachers truly  love the children in their classrooms and have compassion for their families when they are going through hard times.  We don't need to know everything but it helps to know why a child might be having an off day, trouble focusing, etc. My children were adults when I was diagnosed as Stage IV and it was still hard.  I kept them in the loop on everything.  However…they're older.  There are many people on this board who will be able to suggest and tell you how they handled their conversations with their younger children.   On that note….  In 2013 I had a brain tumor removed, a tumor on my spine,  a couple in my lungs and many elsewhere.  Thanks to great doctors, faith, support, and Keytruda, here I am in remission.   On this Mother's Day, I pray that you will have a long and healthy life.  There's plenty of hope for Melanoma patients!

Blessings to you…Terrie

My prayers for you,Deb. 
Terrie

I'm so sorry to hear this.  May Juan rest in peace.  My thoughts and prayers are with you and your son.

Terrie

Wow!  25 years ago…long time!  Thank you for sticking around and contributing with all your wonderful advice!  You've helped so many people.  Here's to continued good health for you!

Best wishes…Terrie

My experience with Keytruda was that the side effects were felt most at first…vitiligo, rashes, and fatigue.  Slowed me down some but I was more energetic after the first 3 months or so.  All in all, I felt good while on Keytruda and I hope you do too!

Best wishes…Terrie

I think you should get both spots looked at by a dermatologist.  You mentioned speaking to your mom about it, so perhaps she can make some recommendations in your home town.  It shouldn't take too long to get an appointment.

I hope it turns out to be nothing, but you are very wise to be proactive about your health.  This was the perfect place to post your concerns.  We are a group of caring people who want to help others.  Keep in touch!  

Best wishes!

Terrie

I had fevers during and after my clinical trial at NIH and at the beginning of my "Year of Keytruda"…always in the evening.  Before I was diagnosed with stage 4 melanoma, I had a couple of episodes of chills, fever, body aches, etc.  At the time I was a second grade teacher and attributed it to something I caught from the children in my class.  However, after my diagnosis I wondered about those fevers because I taught for many years and was rarely sick with anything other than a cold although I went to the doctor a few times about the body aches. 

Best wishes to you!

Terrie

Hi David!

Have you considered NIH in Bethesda, Maryland? (National Institutes of Health) People come from all over the world to participate in their clinical trials.  (I was treated there in 2014.)  A social worker helps you work out the details of travel and lodging.  I live in the area, so that wasn't an issue. Since it is solely a research hospital, your hospital care is paid for.  I don't think a US oncologist would need to recommend you for their trails.  

I wish you all the best!

Terrie

Hi David!

Have you considered NIH in Bethesda, Maryland? (National Institutes of Health) People come from all over the world to participate in their clinical trials.  (I was treated there in 2014.)  A social worker helps you work out the details of travel and lodging.  I live in the area, so that wasn't an issue. Since it is solely a research hospital, your hospital care is paid for.  I don't think a US oncologist would need to recommend you for their trails.  

I wish you all the best!

Terrie

Hi David!

Have you considered NIH in Bethesda, Maryland? (National Institutes of Health) People come from all over the world to participate in their clinical trials.  (I was treated there in 2014.)  A social worker helps you work out the details of travel and lodging.  I live in the area, so that wasn't an issue. Since it is solely a research hospital, your hospital care is paid for.  I don't think a US oncologist would need to recommend you for their trails.  

I wish you all the best!

Terrie

I developed vitiligo while on Keytruda.  In my case it got worse over the course of the treatment but I'm so fair that you can barely tell I have it.  My freckles all disappeared.  My treatment ended in June of 2015 and I'm still white as snow.  I don't mind it at all because I'm in remission.  

Best wishes!

Terrie

Love to hear great news like your's!!!!  Hope you touch base every now and then!  

Happy Times!!!!!!!

Terrie

I hope your numbers come up!!!!  Will NIH reconsider if they do?  I was treated there for a Gene transfer therapy much like TIL.  (Oh…the trial was not considered a success.  I began Keytruda shortly thereafter and it worked.  I've been in remission since June of 2015.)

My best to you!

Terrie