› Forums › General Melanoma Community › The Battle Rages
- This topic has 9 replies, 3 voices, and was last updated 8 years, 10 months ago by
Tamils.
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- July 3, 2015 at 6:40 pm
Hello all, first post on this wonderful site I found yesterday. I was diagnosed stage IV metastatic melanoma in April of 2014. During this past 14 months of course my family and my life has been turned upside down. Had a brain met surgically removed and then had 3 sessions of the newest radiation treatment on the bed of the tumor. Results come back Melanoma metastatic stage IV. We had a PET scan run and found nodule on my left lung, after Dr.s discussing situation the ping pong ball size Nodule was surgically removed along with the entire upper left lobe of my lung August , It to was melanoma, by now we have blood work and biopsy lab work return and I'm BRAF + my med oncologist decided we hold up on chemo for a little while as I was totally exhausted from the surgery. Then in December something happened to left lung it began to fill with blood and I gained 13 pounds in a couple days, we chose to go back in and repair or search out the problem, pumped the blood from the lung, mostly teaming with melanoma cells, I had blood transfusion to recover all the lost blood. Now by February, my Medical Oncologist decided it was time to try and slow this freight train down, so we started Chemo Zelboraf pill form, took it for ab 10 days and side effects went wild, so we had to stop for 2 weeks, then restarted at lower dosage and we clicked along pretty well until last month June, We had a CT Scan done and it showed many lymph nodes expanding in my chest area and 2 new nodules on same Lung. So my Dr. Decided we're going with Yervoy, had my first treatment June 22, went good, since I slept most of the way through it, that Benedryl through IV was a knock out punch. I go back on July 10 for blood work with my oncologist, in the mean time I had a CBC done at my regular Dr. They detected my platelet count up? So they sent info to my Onc. And next Friday we'll find out if that a prob or not? My 2nd Yervoy treatment is Monday July 13. The only effects I've had thus far from my Yervoy treatment has been Extreme fatigue, just kinda a sick feeling which is bearable. So just wondering anyone else at my stage in the game ready for Yervoy #2 and maybe what to expect. Yes there are some VERY scary side effects associated to this drug so I'm hoping Gods got this
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- July 4, 2015 at 1:22 am
Hi Ray!
Well, you've sure been through a lot. Many of us have and we're happily still here! So, I made it through two rounds of Yervoy but had to stop due to pituitary issues…not making cortisol. The only other reaction I had with the Yervoy was fatigue. My history includes a brain met which was surgically removed plus Stereo tactic Radio Surgery, but also had a tumor in my lung, some on my spine, chest wall, hip and more…. I had radiation to the spine as well as an embolization and surgery, participated in a trial at NIH, but Keytruda (Pembrolizumab) was what eventually kicked the melanoma to the curb. I'm doing well for now; currently no signs of disease.
I really hope and pray Yervoy works it's magic for you!
Best Wishes!
Terrie
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- July 4, 2015 at 1:22 am
Hi Ray!
Well, you've sure been through a lot. Many of us have and we're happily still here! So, I made it through two rounds of Yervoy but had to stop due to pituitary issues…not making cortisol. The only other reaction I had with the Yervoy was fatigue. My history includes a brain met which was surgically removed plus Stereo tactic Radio Surgery, but also had a tumor in my lung, some on my spine, chest wall, hip and more…. I had radiation to the spine as well as an embolization and surgery, participated in a trial at NIH, but Keytruda (Pembrolizumab) was what eventually kicked the melanoma to the curb. I'm doing well for now; currently no signs of disease.
I really hope and pray Yervoy works it's magic for you!
Best Wishes!
Terrie
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- July 4, 2015 at 1:22 am
Hi Ray!
Well, you've sure been through a lot. Many of us have and we're happily still here! So, I made it through two rounds of Yervoy but had to stop due to pituitary issues…not making cortisol. The only other reaction I had with the Yervoy was fatigue. My history includes a brain met which was surgically removed plus Stereo tactic Radio Surgery, but also had a tumor in my lung, some on my spine, chest wall, hip and more…. I had radiation to the spine as well as an embolization and surgery, participated in a trial at NIH, but Keytruda (Pembrolizumab) was what eventually kicked the melanoma to the curb. I'm doing well for now; currently no signs of disease.
I really hope and pray Yervoy works it's magic for you!
Best Wishes!
Terrie
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- July 4, 2015 at 7:02 pm
I had some rough side affects with zelboraf. Was on it I think 10 weeks. Had 24 side affects.
Next they did yervoy and side affects were super mild. After 2nd dose some mild stomach churning. Mild rash. Minor fever. But everyone is different.
Good luck. You sure have been through a lot.
Artie
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- July 4, 2015 at 7:02 pm
I had some rough side affects with zelboraf. Was on it I think 10 weeks. Had 24 side affects.
Next they did yervoy and side affects were super mild. After 2nd dose some mild stomach churning. Mild rash. Minor fever. But everyone is different.
Good luck. You sure have been through a lot.
Artie
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- July 4, 2015 at 7:02 pm
I had some rough side affects with zelboraf. Was on it I think 10 weeks. Had 24 side affects.
Next they did yervoy and side affects were super mild. After 2nd dose some mild stomach churning. Mild rash. Minor fever. But everyone is different.
Good luck. You sure have been through a lot.
Artie
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- July 6, 2015 at 9:51 pm
Hi Ray,
After my dad's second dose of Yervoy, he got an itchy rash all over. He took some prednisone to knock it down and was able to taper off the steroids within just ten days or so. It wasn't that uncomfortable for him, but the doctor decided that it was enough for him to declare that my father had 'failed' Yervoy– because that was a prerequisite for entering the Merck PD1 trial (now pembro). And so he jumped to that treatment. I remember when we were first reading the possible side effects for Yervoy, they seemed terrifying, but so many patients have taken it now that doctors have a lot more experience detecting and treating side effects before they get too bad. Have your doctors considered an antiPD1, next or in conjunction with the Yervoy? Best of luck to you.
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- July 6, 2015 at 9:51 pm
Hi Ray,
After my dad's second dose of Yervoy, he got an itchy rash all over. He took some prednisone to knock it down and was able to taper off the steroids within just ten days or so. It wasn't that uncomfortable for him, but the doctor decided that it was enough for him to declare that my father had 'failed' Yervoy– because that was a prerequisite for entering the Merck PD1 trial (now pembro). And so he jumped to that treatment. I remember when we were first reading the possible side effects for Yervoy, they seemed terrifying, but so many patients have taken it now that doctors have a lot more experience detecting and treating side effects before they get too bad. Have your doctors considered an antiPD1, next or in conjunction with the Yervoy? Best of luck to you.
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- July 6, 2015 at 9:51 pm
Hi Ray,
After my dad's second dose of Yervoy, he got an itchy rash all over. He took some prednisone to knock it down and was able to taper off the steroids within just ten days or so. It wasn't that uncomfortable for him, but the doctor decided that it was enough for him to declare that my father had 'failed' Yervoy– because that was a prerequisite for entering the Merck PD1 trial (now pembro). And so he jumped to that treatment. I remember when we were first reading the possible side effects for Yervoy, they seemed terrifying, but so many patients have taken it now that doctors have a lot more experience detecting and treating side effects before they get too bad. Have your doctors considered an antiPD1, next or in conjunction with the Yervoy? Best of luck to you.
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