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Diagnosed Stage IV Metastatic June 2011 : Brain, Liver & Lung : Started Yervoy!

momof2kids
Posts: 3
Joined: Sep 2011

Hi everyone, this is my 1st time posting, just joined a few days ago.

I'm from Pittsburgh, PA, thankfully home of the Hillman Cancer Center & UPMC Presby, two of the top places to get treated.

Back in May 2011, I had horrible headaches, and my vision was getting blurry, for almost a month I dealt with it (thinking it was my birth control doing it, so I got off that), and it didn't stop. So, June 21st 2011, I went for a head scan, and they found 2 SPOTS on my brain.

June 21, 2011, I was in the hospital and and June 22, I had brain surgery to remove the GIANT ORANGE size spot above my LEFT EYE (which caused the blurry vision), and they left the small spot on the other side of my brain in (size of a quarter).

I was out of the hospital after a few days and the eye doctor called and said that my vision tests showed hugely abnormal distress, and said I needed to come back in and after a few more tests, they sent me to the hospital, to either get eye surgery or a Lumbar drain (which is what I got for 8 days over July 4th), as all the fluid was still up around my brain causing stress on the eyes.

So for 2 months, for all of July & August, I had to keep checking with the eye doctor , and luckily my vision is almost back to normal as of Sept 2011 and in July I had the Gamma Knife treatment (which I just lost my hair in both spots they treated, and for almost 2 months it hasn't grown back!)

Then my chest xray showed I had 2 spots in my right lung (1.3cm & 3.9cm) and 1 spot in my liver (4.6cm), which for 2 months went untreated while my eyes and head were recovering.

FINALLY Sept 2nd, I started 1st injection of YERVOY / IPI . No side effects yet except for some very dry skin on my head. I go for my 2nd round Sept 23rd at Hillman Center in Pittsburgh. This is my 1st treatment, and all I can say is I HOPE THIS WORKS to shrink these down.

I will go thru whatever I need to to stay alive for as long as I can. I've had a very difficult time with this emotionally, I break down almost everyday crying thinking about the future, just having a hard time dealing with all this, most my friends must think skin cancer is a skin only thing and it's NOT, hell even I had no idea before I got this, I had moles removed this winter, where is where they think this may have came from.

I'm 31 years old and have 2 kids, who are 6 & 2, and I want to stay on this beautiful earth for as long as I can to be with my kids!

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

You'll find a lot of supportive people on this message board as well as the melanoma site (saw this post there too). I hope you have some good results from the Yervoy treatment. My dad's oncologist (a melanoma specialist) didn't think Yervoy would be best for dad's situation. We find out this week if my dad has the BRAF mutation that goes with the new Zelboraf medicine. Some people have been taking both with some good results. I imagine your doctors will or have tested you for that as well.
There are also a lot of people who are sticking around a lot longer than their doctors thought thanks to determination, taking care of themselves, and surely in part thanks to advances in treatment with the two new meds this year.
Hang in there!
-DF

lmaso1
Posts: 9
Joined: Apr 2012

My husband had the BRAF mutation and tried taking the Zelboraf, but had poor side effects, they stopped after only a month. His bones hurt and it was hard for his to walk, the most affected were his ankle & wrists. He got skin lesions. He was on pain medication but still could not tolerate the medicine. His PET scan showed clear in November, but felt tumor under his arm and now it has spread to his lungs, spin & liver. We are going to start Yervoy.

Grambo
Posts: 1
Joined: Jun 2011

Were your moles benign?

momof2kids
Posts: 3
Joined: Sep 2011

All the moles I got removed never came back with any cancerous results, like "oh you have melanoma", etc. Doctor removed some, and said they were certain levels, and I was fine. Two I had to go in to get cut up a bit & stitched up, then said those came back fine too.

still no idea where mine started, what mole(s) , etc started it, etc.

Joyce Tarnow
Posts: 4
Joined: Jan 2012

Hi Mom of 2 Kids:

How are you fareing with your Yervoy treatments? Any serious side effects? How is the fatigue level? I have a Stage IV "occult metastatic melanoma" with the primary tumor in my esophagus. I start Yervoy today. Chemo with Taxotere and Carboplatin was effective after the first three chemo infusions but after the next three the scan showed the metastases in lungs and liver growing again. I just finished thirty radiation treatments of the primary tumor over a six-weel period. The effectiveness of the radiation will not be known for several months.

My melanoma did not start from a skin cancer as far as my oncologist can tell. I had fourteen years of semi-annual dermatology check-ups and nothing more serious than infiltrating basal cell carcinoma promptly treated.

I sincerely hope you are getting a very good response from the Yervoy injections. Best of luck, Joyce in Florida

Joyce Tarnow
Posts: 4
Joined: Jan 2012

Hi Mom of 2 Kids:

How are you fareing with your Yervoy treatments? Any serious side effects? How is the fatigue level? I have a Stage IV "occult metastatic melanoma" with the primary tumor in my esophagus. I start Yervoy today. Chemo with Taxotere and Carboplatin was effective after the first three chemo infusions but after the next three the scan showed the metastases in lungs and liver growing again. I just finished thirty radiation treatments of the primary tumor over a six-weel period. The effectiveness of the radiation will not be known for several months.

My melanoma did not start from a skin cancer as far as my oncologist can tell. I had fourteen years of semi-annual dermatology check-ups and nothing more serious than infiltrating basal cell carcinoma promptly treated.

I sincerely hope you are getting a very good response from the Yervoy injections. Best of luck, Joyce in Florida

Joyce Tarnow
Posts: 4
Joined: Jan 2012

Hi Mom of 2 Kids:

How are you fareing with your Yervoy treatments? Any serious side effects? How is the fatigue level? I have a Stage IV "occult metastatic melanoma" with the primary tumor in my esophagus. I start Yervoy today. Chemo with Taxotere and Carboplatin was effective after the first three chemo infusions but after the next three the scan showed the metastases in lungs and liver growing again. I just finished thirty radiation treatments of the primary tumor over a six-weel period. The effectiveness of the radiation will not be known for several months.

My melanoma did not start from a skin cancer as far as my oncologist can tell. I had fourteen years of semi-annual dermatology check-ups and nothing more serious than infiltrating basal cell carcinoma promptly treated.

I sincerely hope you are getting a very good response from the Yervoy injections. Best of luck, Joyce in Florida

Kim C
Posts: 1
Joined: Jan 2013

Hi , I was diagnosed with stage 4 melanoma in august of 2011, After 5 weeks of radiation and 3 months of a different chemo drug,I started on yervoy in december of 2011. I finished in March of 2012. Since then I have been tested every three months and I am in complete remission.I just got back from MD Anderson yesterday, ct, pet and brain mri are all clear.That being said, I cannot stress how important a positive attitude is in the whole process. Your body listens to your mind. I will say i had some mild colitis with the vervoy toward the end of treatment and for a few months after. I did take a probiotic twice a day, along with fish oil supplements and vitamin d 3. I continue to take these supplements.Other than that, I felt good while taking the yervoy. I had energy, an appetite and just felt good.

Lilly2013
Posts: 12
Joined: Jan 2013

Are you saying they cannot find any cancer after the Yervoy, or do you still have cancer, but it is in remission?

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