@slh4448
Forum Replies Created
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- November 18, 2016 at 9:05 pm
Hi,
I was diagnosed with stage 3a melanoma back in late May. 3/mm2. No ulceration and negative for extracapsular extension. I had a WLE and SLNB back in July. I had one lymph node removed which came back positive. I consulted with my docs at the University of KU Cancer Center, MDA and Sloan Kettering and they all recommended that I have the CLND which I decided not to have.
I started on Yervoy 10mg back on 8/15 and had the second dose on 9/20. Didn't tolerate the Yervoy very well at all. Lots of GI issues and was diagnosed with colitis back in early October after having a colonoscopy so no more Yervoy for me. Treating the colitis since mid October and getting better each day but just a little bit. I am considered to have NED. No other treatments are available for me at this point. I have my first scans scheduled for 12/8. The Yervoy definitely "revved" up my immune system but apparently too much for me to tolerate.
I too am now taking the watch and wait approach and I'm at peace with that. I also have never second guessed myself on not having the CLND….it was simply a personal choice and again, I'm at peace with that decision as well.
Best of luck to your daughter and for your family!!
Stacy
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- November 18, 2016 at 9:05 pm
Hi,
I was diagnosed with stage 3a melanoma back in late May. 3/mm2. No ulceration and negative for extracapsular extension. I had a WLE and SLNB back in July. I had one lymph node removed which came back positive. I consulted with my docs at the University of KU Cancer Center, MDA and Sloan Kettering and they all recommended that I have the CLND which I decided not to have.
I started on Yervoy 10mg back on 8/15 and had the second dose on 9/20. Didn't tolerate the Yervoy very well at all. Lots of GI issues and was diagnosed with colitis back in early October after having a colonoscopy so no more Yervoy for me. Treating the colitis since mid October and getting better each day but just a little bit. I am considered to have NED. No other treatments are available for me at this point. I have my first scans scheduled for 12/8. The Yervoy definitely "revved" up my immune system but apparently too much for me to tolerate.
I too am now taking the watch and wait approach and I'm at peace with that. I also have never second guessed myself on not having the CLND….it was simply a personal choice and again, I'm at peace with that decision as well.
Best of luck to your daughter and for your family!!
Stacy
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- November 18, 2016 at 9:05 pm
Hi,
I was diagnosed with stage 3a melanoma back in late May. 3/mm2. No ulceration and negative for extracapsular extension. I had a WLE and SLNB back in July. I had one lymph node removed which came back positive. I consulted with my docs at the University of KU Cancer Center, MDA and Sloan Kettering and they all recommended that I have the CLND which I decided not to have.
I started on Yervoy 10mg back on 8/15 and had the second dose on 9/20. Didn't tolerate the Yervoy very well at all. Lots of GI issues and was diagnosed with colitis back in early October after having a colonoscopy so no more Yervoy for me. Treating the colitis since mid October and getting better each day but just a little bit. I am considered to have NED. No other treatments are available for me at this point. I have my first scans scheduled for 12/8. The Yervoy definitely "revved" up my immune system but apparently too much for me to tolerate.
I too am now taking the watch and wait approach and I'm at peace with that. I also have never second guessed myself on not having the CLND….it was simply a personal choice and again, I'm at peace with that decision as well.
Best of luck to your daughter and for your family!!
Stacy
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- October 28, 2016 at 12:04 pm
So I guess I spoke to soon 🙁
On Thursday I had 4 more cases of diarrhea and so far this morning I have had three more cases. Yesterday the doctors increased my prednisone back up to 80mg daily from 40mg (had only been two days). They also added an antibiotic Bactram because with long-term usage of prednisone they worry about pneumonia. Just what I don't need! UGH!!!!!!!!!!
Wow this is quite the journey just after two doses of ipi with my last dose being on Spetember 20th.
Stacy
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- October 28, 2016 at 12:04 pm
So I guess I spoke to soon 🙁
On Thursday I had 4 more cases of diarrhea and so far this morning I have had three more cases. Yesterday the doctors increased my prednisone back up to 80mg daily from 40mg (had only been two days). They also added an antibiotic Bactram because with long-term usage of prednisone they worry about pneumonia. Just what I don't need! UGH!!!!!!!!!!
Wow this is quite the journey just after two doses of ipi with my last dose being on Spetember 20th.
Stacy
-
- October 28, 2016 at 12:04 pm
So I guess I spoke to soon 🙁
On Thursday I had 4 more cases of diarrhea and so far this morning I have had three more cases. Yesterday the doctors increased my prednisone back up to 80mg daily from 40mg (had only been two days). They also added an antibiotic Bactram because with long-term usage of prednisone they worry about pneumonia. Just what I don't need! UGH!!!!!!!!!!
Wow this is quite the journey just after two doses of ipi with my last dose being on Spetember 20th.
Stacy
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- October 26, 2016 at 5:27 pm
Hey all,
Just a quick update from me and thanks for everyone's responses…they have all been helpful.
So after meeting with my docotor last week, I am not moving forward with anymore ipi. Two doses and that is it since I developed colitis. I have been on Budesinide for a few weeks now and they just yesterday upped my dose from 6mg daily to 9mg and last week they dropped by prednisone from 80mg daily to 60mg daily and starting today down to 40mg daily. That's why the increase in Budesinide. I feel relatively fine. Little fatigued, having trouble sleeping but they think it's due to the prednisone (which I take around 6-6:30am every morning). I am also taking 30mg daily of a ppi.
Since I had the colitis flare up, a big fat NO on continuing on with ipi!! Being stage 3a, nothing else for me to do regarding another form of treatment especially since I did not have the CLNB. I'm cool with that. We are doing a wait and watch, get my colitis much more under control and have my first scan in early December. Will go from there.
Stacy
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- October 26, 2016 at 5:27 pm
Hey all,
Just a quick update from me and thanks for everyone's responses…they have all been helpful.
So after meeting with my docotor last week, I am not moving forward with anymore ipi. Two doses and that is it since I developed colitis. I have been on Budesinide for a few weeks now and they just yesterday upped my dose from 6mg daily to 9mg and last week they dropped by prednisone from 80mg daily to 60mg daily and starting today down to 40mg daily. That's why the increase in Budesinide. I feel relatively fine. Little fatigued, having trouble sleeping but they think it's due to the prednisone (which I take around 6-6:30am every morning). I am also taking 30mg daily of a ppi.
Since I had the colitis flare up, a big fat NO on continuing on with ipi!! Being stage 3a, nothing else for me to do regarding another form of treatment especially since I did not have the CLNB. I'm cool with that. We are doing a wait and watch, get my colitis much more under control and have my first scan in early December. Will go from there.
Stacy
-
- October 26, 2016 at 5:27 pm
Hey all,
Just a quick update from me and thanks for everyone's responses…they have all been helpful.
So after meeting with my docotor last week, I am not moving forward with anymore ipi. Two doses and that is it since I developed colitis. I have been on Budesinide for a few weeks now and they just yesterday upped my dose from 6mg daily to 9mg and last week they dropped by prednisone from 80mg daily to 60mg daily and starting today down to 40mg daily. That's why the increase in Budesinide. I feel relatively fine. Little fatigued, having trouble sleeping but they think it's due to the prednisone (which I take around 6-6:30am every morning). I am also taking 30mg daily of a ppi.
Since I had the colitis flare up, a big fat NO on continuing on with ipi!! Being stage 3a, nothing else for me to do regarding another form of treatment especially since I did not have the CLNB. I'm cool with that. We are doing a wait and watch, get my colitis much more under control and have my first scan in early December. Will go from there.
Stacy
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- October 26, 2016 at 5:19 pm
Karen,
Thak you for your response. Quick question for you. My doctor hasn't mentioned Nivo probably because I am stage 3a with NED and I did not have a CLNB. What stage are you and did you have a CLNB? I think having a CLNB is a prerequisite of being able to get Nivo?? Plus I'm apparently NED but will know for sure when I have my first scan around early December. Thanks so much!!!
Stacy
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- October 26, 2016 at 5:19 pm
Karen,
Thak you for your response. Quick question for you. My doctor hasn't mentioned Nivo probably because I am stage 3a with NED and I did not have a CLNB. What stage are you and did you have a CLNB? I think having a CLNB is a prerequisite of being able to get Nivo?? Plus I'm apparently NED but will know for sure when I have my first scan around early December. Thanks so much!!!
Stacy
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- October 26, 2016 at 5:19 pm
Karen,
Thak you for your response. Quick question for you. My doctor hasn't mentioned Nivo probably because I am stage 3a with NED and I did not have a CLNB. What stage are you and did you have a CLNB? I think having a CLNB is a prerequisite of being able to get Nivo?? Plus I'm apparently NED but will know for sure when I have my first scan around early December. Thanks so much!!!
Stacy
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