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Melanoma -Treatments?

medfordoregon's picture
medfordoregon
Posts: 5
Joined: Apr 2013

Just had my 1st Oncology appointment yesterday and received the news.  I have no knowledge of Melanoma Spitzoid Type and have never met anyone that has been at stage 3 or 4.  

MELANOMA has spread to at least the sentinel node, microscopic amount less than .5mm

Still waiting for the Insurance to give prior authorization for my Pet Scan and MRI to see if the cancer has spread anywhere.

20-70% to live to 5 years.  Didn't realize it was that aggressive or deadly.  

Looking for treatments and Yervoy keeps coming up, but when I read up on it I find that it could extend my life 3-6 months?  Am I reading that right?

Is 

their other survivors out their with Melanoma Cancer that has lived longer than the 5 year span after being diagnosed as a stage 3?

 

 

 

 

huffman6djgirl
Posts: 23
Joined: May 2009

I was diagnosed stage 3a  in 2009, I am still surviviing. Was recently diagnosed as stage 3c when a lymphnode in my right clavicle tested positive. Getting ready to start a clinical trial. So we are out here. Good Luck!!!

 

 

huffman6djgirl
Posts: 23
Joined: May 2009

The clincal trial I am getting ready to do is with the zelboraf, I tested pos for the BRAF. I am currently considered ned...

medfordoregon's picture
medfordoregon
Posts: 5
Joined: Apr 2013

Just have to wait and see.

Good Luck and stay healthy.

I will say this though.  This sucks.

 

MelanomaisNOTme's picture
MelanomaisNOTme
Posts: 3
Joined: Mar 2013

I was diagnosed stage 2A in January of 2012.  January 2 @ 11am to be exact.  Well, at least that is when I heard the news.  My insurance denied my PETSCAN three times.  I just took my annual chest xray and was told it came back normal.  I am not reassured and would have preferred that PETSCAN to be certain.

I am 45 years old.  I have been told by my dermatological oncologist that I have a 92% chance of living past the next 5 years.  People who have never been given stats as to how long they MAY live really have no idea what you are going through.

I hope you beat this disease, and will be praying for you to do just that.  No one knows our fear but us.

Feel free to contact me whenever you feel the need to.

Rick

MelanomaisNOTme's picture
MelanomaisNOTme
Posts: 3
Joined: Mar 2013

double post...sorry.

joelcairo
Posts: 8
Joined: Mar 2013

There are certain cytotoxic drugs and pathway inhibitors that can stabilize disease for a few months, after which time progression usually continues. The tumor makes adaptations to become resistant to the drug or to find alternate pathways that allow it to continue growing.

Yervoy does not work like that.

Yervoy removes an inhibiting factor in your immune system so that it can more efficiently target tumors. It can take up to 4, 6, 8 months to provide visible results, and it can even cause enlargement of tumors in the short term due to swelling from immune cells invading the tumor. And once your immune system has been trained to target and kill cancer cells, tumors can continue to regress long after you stop taking the drug.

So the bottom line is that it's confusing. Personally I don't think we have the right tools for determining whether it's working at all, or for quantifying what kind of benefit it provides. From my recollection, studies say that only a small minority of patients see very significant benefits, but IMO this may be understating the drug's real value. It's definitely one of the more interesting drugs out there.

 

Zod66's picture
Zod66
Posts: 28
Joined: May 2008

Diagnosed April 20, 2005 Stage III A.  I think you can click on my name and it takes you to my profile. But anyhow we are out here. Our skin is our largest organ and is full of blood vessels. These little highways allow Melanoma to spread fast especially to the brain which is the largest consumer of blood. Thus an MRI of the head is a must to determine if it's metastasised to the brain (brain mets). Take your situation seriously; however, at the same time do not get too caught up on the statistics.

Keep your family and friends informed and ask them to be involved. You will need the support don't be afraid to ask for it. I called family and friends to come sit with me while getting my Interferon treatments; they were glad that I called.

medfordoregon's picture
medfordoregon
Posts: 5
Joined: Apr 2013

Glad to hear their are survivors out their.  

I'm moving as fast as I can on getting the procdures done.  The waiting part is frustrating but I know I'm lucky for having a surgeon willing to move things around to get me in. 

Did all three scans last Monday, and the MRI, PET, CAT came back clear Thursday. So the surgeon operated on me the next day. Fri

day for the third operation on my chest as the first two came back positive for Melanoma.   The surgeon wanted to see if he could get clear margins on the third reincision.   He also convinced me to remove the rest of my lymph nodes in my left armpit/chest area since the sentinel node came back positive.  

 

 

He just took the drain tube out today.  

Drained between 60-90 ml a day but each day it reduced. On the 6th day I was down to 20 ml in 24 hours so he decided it was time to remove the drain tube.  

Surprised the lymph fluid was so much. I'm going to assume it just circulates in my body since the drain is pulled.  

Keep an eye out for swealling For now and for 5-13-13 to go to Portland and see Dr. Curti about getting into a trial.  They have YERVOY as one of the trials for stage 3 now.  Along with other trials. 

 

osolisa
Posts: 2
Joined: Apr 2013

In Feb. 2012 my Mom was diagosed with stage 4 Melanoma with a large lymph under her armpit and a melanoma that appeared on her scalp.  She began treatment of Yervoy in April 2012.  She continued treatments to 4 doses. By the time the 4th dose, the lymph had shrunk. Additional treatments are being given every 3 months, with her Dr. saying for the next 2 years. Side effects for her are sometimes unbearable but nothing that has sent her to the hospital. Her Dr. said she could die from the side effects. She deals with them about 1- 3 weeks after treatment.  The lymph node is not noticable at all. She had a CT scan and there is no cancer in her brain.  I am not sure why she is going to have treatments for the next few years but I would highly recommend Yervoy to anyone! Melanoma runs in my family and the love of my life died of it. I wish Yervoy was around in 1994 when he passed. I would say try it. It has had great results for my 79 yr old Mother.

Kim41
Posts: 1
Joined: Dec 2011

I remember just how you are feeling. It is so overwhelming at first. I thought it was a death sentence. Alot of people stage 3 and 4 go on to live long lives. Don't believe everything you read on the internet. I had myself scared shitless. Another good site for support is Melanoma research foundation. Good luck to you. Just remember the statistics you see are usually old and there are many new drugs and treatments. You may never have another recurrence again. Take care of yourself.  Smile   Kim

 

 

 

drotundo
Posts: 1
Joined: Jan 2014

Yervoy maximally will prolong life for 10 months! This is an optimistic number. The side effects, by far outweigh the benefits! My father in law developed pneumonitis, a deadly side effect to yervoy, and passed away as a result from it. The tumor never shrank, in fact it got bigger. Radiation and chemo are a much better, effective choice!

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