lmhl

My experience is a little different.  My husband died from metastatic melanoma 2 years ago. We trusted the the doctors and the'health care system'.  His skin biopsy returned as melanoma on March 9th.  He finally got into the cancer clinic for an initial appointment April 6th.  He had multiple swollen lymph nodes and was scheduled a week later for biopsies of those.  CLND to be scheduled ASAP. It was first scheduled May 9th but got cancelled two days prior due to "no OR" time.  Rescheduled to May 28th.  13 positive lymph nodes in his neck at that time ranging from 1-8cm. We again wait for radiation to be started as that was what we were told was the best.  That started July 7th for 30 sessions.  That is 4 months following the initial biopsy.  He did radiation and then waited until Oct for one dose of dacarbazine to be given as they wouldn't start  ipilimumab without the one dose trial.  Then 3 weeks later he started ipilimumab.  He had 2 doses three weeks apart.  Then one sad day in early December he had a hemorrhagic stroke.  We found out he had brain mets.  They tried whole brain radiation for 10 sessions. He died 4 weeks later.  

Initially I was embarrassed that I didn't advocate for him  more.  He was like your brother and was just trusting that the doctors had his best interest.  I would bug him everyday to call and try to get sooner appointments.  Initially he tried and was told there was no way to get in sooner.  Then would say if they felt I needed to be seen sooner they would have called.  He wanted to be a "good patient" and not rock the boat.  I did finally at one point call the hospital and beg them to take him in for an assessment when he lost 30 lbs over 3 months.  

It now makes me angry that I live in a great country with some of the best healthcare in the world and this was the care he got.  I'm confident he would have lived if he had more prompt care.  I watched with delight this morning on CNN about the doctors in Houston that came through for the patient in hospital with melanoma waiting for treatment, wading through flood waters. They are to be commended for their selfless act. 

Moral of my long story-trust your gut and be a squeaky wheel.  You are fighting for a life and there are no do overs.  

Are you for real asking that question on a forum like this when people are struggling with end stage melanoma. Of course you should get it checked out if you are concerned whether you have insurance or not. No one will tell you not to on a forum like this. 

Are you for real asking that question on a forum like this when people are struggling with end stage melanoma. Of course you should get it checked out if you are concerned whether you have insurance or not. No one will tell you not to on a forum like this. 

Are you for real asking that question on a forum like this when people are struggling with end stage melanoma. Of course you should get it checked out if you are concerned whether you have insurance or not. No one will tell you not to on a forum like this. 

My husband had radiation on his neck following a CLND for Melanoma Stage III. He had side effects of sunburned appearance as well. The worse symptoms however were dry mouth, difficulty swallowing and altered taste. It was so bad that he ended up losing 40lbs in 2-3 months, which led to him getting a G-tube for feeding.   In hindsight, we really wish that he didn't have radiation therapy.  Not sure if he was just unlucky and non responsive to radiation, but I haven't seen much benefit of radiation therapy in the scientific evidence either. If we were in the position again of having to decide on radiation or not-we would say no.  But that is just our experience. Ask lots of questions.  I wish you all the best. 

Low risk-but from my experience melanoma is definitely a cancer to have a healthy respect for. You are doing the right thing to learn more about it. 

Low risk-but from my experience melanoma is definitely a cancer to have a healthy respect for. You are doing the right thing to learn more about it. 

Low risk-but from my experience melanoma is definitely a cancer to have a healthy respect for. You are doing the right thing to learn more about it. 

Gary

Just curious if you think that waiting 1 month for a biopsy is a long time?  Shouldn't this be done sooner?

Gary

Just curious if you think that waiting 1 month for a biopsy is a long time?  Shouldn't this be done sooner?

Gary

Just curious if you think that waiting 1 month for a biopsy is a long time?  Shouldn't this be done sooner?

Moira

Anecdotally from our experience I think you make a good point about probiotics.  My husband was doing ok until he ended up with a G-tube following surgery and radiation to his neck.  After the G-tube was placed he started IPI and quickly went down hill from there.  I think nutrition plays a larger role than thought before, and the Gtube sugar water with nutrients just doesn't cut it.

Thanks for posting-and thanks Bubbles for the follow up replies with the references.

Michelle

Moira

Anecdotally from our experience I think you make a good point about probiotics.  My husband was doing ok until he ended up with a G-tube following surgery and radiation to his neck.  After the G-tube was placed he started IPI and quickly went down hill from there.  I think nutrition plays a larger role than thought before, and the Gtube sugar water with nutrients just doesn't cut it.

Thanks for posting-and thanks Bubbles for the follow up replies with the references.

Michelle

Moira

Anecdotally from our experience I think you make a good point about probiotics.  My husband was doing ok until he ended up with a G-tube following surgery and radiation to his neck.  After the G-tube was placed he started IPI and quickly went down hill from there.  I think nutrition plays a larger role than thought before, and the Gtube sugar water with nutrients just doesn't cut it.

Thanks for posting-and thanks Bubbles for the follow up replies with the references.

Michelle

Celeste

When treating brain mets with SRS and anti-PD1 does it matter if the mets have started to bleed or not?  Would a bleeding brain mets be a contridiction to treatment?  Just curious, as I believe that in most cases it is the cascade that occurs following the bleed that causes the seizures and not necessarily the tumour itself.   

Thanks.