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pfloyd.
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- June 16, 2012 at 4:13 pm
I was diagnosed with stage 4 melanoma of the lung via CT scan/biopsy and PET scan in January … very small tumor (1 cm) … used VATS surgery to remove “wedge” of my left lung in February … had a followup CT/PET scans in May the melanoma had spread to the leura of my left lung, lower left quadrant of my abdomen and in my liver … I had been on Leukine (self injections … 14 days of shots/14 days recovery) since the surgery (56 shots/4 rounds later the cancer had matastisized to the other locations listed above …I was diagnosed with stage 4 melanoma of the lung via CT scan/biopsy and PET scan in January … very small tumor (1 cm) … used VATS surgery to remove “wedge” of my left lung in February … had a followup CT/PET scans in May the melanoma had spread to the leura of my left lung, lower left quadrant of my abdomen and in my liver … I had been on Leukine (self injections … 14 days of shots/14 days recovery) since the surgery (56 shots/4 rounds later the cancer had matastisized to the other locations listed above … my oncology team at the James OSU Medical Ctr in Columbus took me off of the Leukine and started me on Zelboraf with my first dosages began 6/4/12 … the first week was rather uneventful other than fatigue, week 2 has had the onset of major joint pain wrists , muscle pain throughtout my body and the fatigue continueing … and the beat goes on …
(my saga started in Oct. 2010, excission of melanoma on inner calf of my left leg, lymph nodes removed in my groin … received immuno therapy Interferon – the most difficult chemo I have had – tore my body down as low as it could get for 2 months … when I did the Leukine I told my oncologist the Leukine was like taking candy compared to the Interferon immuno therapy LOL) – neither how ever was successful in building my immune system to fight off the cancer …)
Michael
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- June 16, 2012 at 7:06 pm
Hi Michael –
Sorry to meet you here 🙂 and to hear about your journey so far. I started Zelboraf on 5/30 and know the joint pain very well!! I also ended up with a horrible rash and my doctors had me stop Zelboraf for a week to get it under control. Just started back up yesterday. Best of luck to you! Hope it works for you! I'll get my first scan in mid July.
Thoughts and prayers your way!
Erin
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- June 16, 2012 at 7:06 pm
Hi Michael –
Sorry to meet you here 🙂 and to hear about your journey so far. I started Zelboraf on 5/30 and know the joint pain very well!! I also ended up with a horrible rash and my doctors had me stop Zelboraf for a week to get it under control. Just started back up yesterday. Best of luck to you! Hope it works for you! I'll get my first scan in mid July.
Thoughts and prayers your way!
Erin
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- June 16, 2012 at 7:06 pm
Hi Michael –
Sorry to meet you here 🙂 and to hear about your journey so far. I started Zelboraf on 5/30 and know the joint pain very well!! I also ended up with a horrible rash and my doctors had me stop Zelboraf for a week to get it under control. Just started back up yesterday. Best of luck to you! Hope it works for you! I'll get my first scan in mid July.
Thoughts and prayers your way!
Erin
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- June 18, 2012 at 1:31 am
Erin, thank you much for the reply … the joint pain is soooooo unpredictable it seems – had horrific pain in my right wrist for the last week then all of the sudden when I woke up this morning the pain in my wrist was totally gone – BUT not to be out done it seems to have moved into my elbows and knees – go figure … I discribed the pain to one of the oncologist PA's from OSU Medical Center/The James Cancer hospital as being as if someone had taken a brush full of "pain" stroked the muscles in my body – instant pain in the muscles BUT then stopped at each of my joints and let the brush drain itself of "pain" into each joint – ankles/knees/elbows/wrists LOL … I see my oncologist June 28th – no scans scheduled on that date only a blood draw …
… thanks again – I will do my best to keep posting … although not the best of circumstances – I feel good about being able to share with others "fighting" the same battle … YOU take care of you Erin!
Thoughts and prayers back atcha …
Michael
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- June 18, 2012 at 1:31 am
Erin, thank you much for the reply … the joint pain is soooooo unpredictable it seems – had horrific pain in my right wrist for the last week then all of the sudden when I woke up this morning the pain in my wrist was totally gone – BUT not to be out done it seems to have moved into my elbows and knees – go figure … I discribed the pain to one of the oncologist PA's from OSU Medical Center/The James Cancer hospital as being as if someone had taken a brush full of "pain" stroked the muscles in my body – instant pain in the muscles BUT then stopped at each of my joints and let the brush drain itself of "pain" into each joint – ankles/knees/elbows/wrists LOL … I see my oncologist June 28th – no scans scheduled on that date only a blood draw …
… thanks again – I will do my best to keep posting … although not the best of circumstances – I feel good about being able to share with others "fighting" the same battle … YOU take care of you Erin!
Thoughts and prayers back atcha …
Michael
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- June 18, 2012 at 1:31 am
Erin, thank you much for the reply … the joint pain is soooooo unpredictable it seems – had horrific pain in my right wrist for the last week then all of the sudden when I woke up this morning the pain in my wrist was totally gone – BUT not to be out done it seems to have moved into my elbows and knees – go figure … I discribed the pain to one of the oncologist PA's from OSU Medical Center/The James Cancer hospital as being as if someone had taken a brush full of "pain" stroked the muscles in my body – instant pain in the muscles BUT then stopped at each of my joints and let the brush drain itself of "pain" into each joint – ankles/knees/elbows/wrists LOL … I see my oncologist June 28th – no scans scheduled on that date only a blood draw …
… thanks again – I will do my best to keep posting … although not the best of circumstances – I feel good about being able to share with others "fighting" the same battle … YOU take care of you Erin!
Thoughts and prayers back atcha …
Michael
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- June 16, 2012 at 10:00 pm
Thank you for the information regarding your experiences with melanoma. This is helpful and informative to us all. Please keep us updated on your progress. Stay well.
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- June 16, 2012 at 10:00 pm
Thank you for the information regarding your experiences with melanoma. This is helpful and informative to us all. Please keep us updated on your progress. Stay well.
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- June 16, 2012 at 10:00 pm
Thank you for the information regarding your experiences with melanoma. This is helpful and informative to us all. Please keep us updated on your progress. Stay well.
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- June 17, 2012 at 2:06 am
Mike, welcome aboard, sorry to hear that you are going through all of this. I'm reading through your history, and have noticed that your treatments have been chosen haphazardly, are you seeing a melanoma specialist?
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- June 18, 2012 at 2:10 am
The haphazardness is probably me more than the docs LOL … yes I am seeing Dr. Kari Kendra – Melanoma Oncologist at OSU Medical Center/The James Cancer Hospital in Columbus …
10/2010 mole on my right calf biospied
11/2010 port inserted in upper left chest
11/2010 excission of the mole/area on right calf … sentinel node biospy (clear)
12/2010 started immunotherapy – High dose Interferon treatment (20 treatments)
1/2011 finished the Interferon treatments
… good blood tests every 8 weeks thru to November 2011 …
11/2011 CT scan – showed small tumor on my lower left lung and right perotid gland
12/2011 needle biopsies of both lung/perotid gland (lung positive as melanoma/perotid gland negative)
2/3/2012 VATS surgery – wedge resection of spot on lower left lung – all edges were clean …
3/2012 Began self injections in the abdomen of Leukine (immunotherapy) 14 days of one shot per day/14 days off … made it thru 4 rounds (56 shots)
5/2012 CT scan showed cancer on the left lung, between 7th/8th ribs/lower bowel area 2 separate areas of concern
5/2012 PET scan indicated cancer in the pleura around the left lung/2 areas on the lower bowel/ 1 spot in the liver
5/25/2012 Met with the oncology team to discuss options … Biological ( Interleukin 2 or IP) , Targeted therapy (Zelboraf being the oral chemo targeting the proteins that the cancer feeds off of) , Regular Chemotherapy … Reg Chemo acts to slow – ruled out … Z-boraf (quick acting) went with this as a Part I action to stop the growth of the tumors … will be doing Z-boraf for at least 4 1/2 months – evaluate the progress either continue or change to Biological stage …
6/4/12 began Z-boraf oral chemo … beginning week #3 Tuesday 6/19 …
6/28/12 scheduled to see Dr. Kendra at the James …
… so really the treatment HAS been a logical progression – removal of the melanoma, immunotherapy 2 times to build up my immune system to fight the disease … when that did not work attacking the disease itself with targeted therapy(Zelboraf) …
Thanks for the response!
Michael
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- June 18, 2012 at 2:10 am
The haphazardness is probably me more than the docs LOL … yes I am seeing Dr. Kari Kendra – Melanoma Oncologist at OSU Medical Center/The James Cancer Hospital in Columbus …
10/2010 mole on my right calf biospied
11/2010 port inserted in upper left chest
11/2010 excission of the mole/area on right calf … sentinel node biospy (clear)
12/2010 started immunotherapy – High dose Interferon treatment (20 treatments)
1/2011 finished the Interferon treatments
… good blood tests every 8 weeks thru to November 2011 …
11/2011 CT scan – showed small tumor on my lower left lung and right perotid gland
12/2011 needle biopsies of both lung/perotid gland (lung positive as melanoma/perotid gland negative)
2/3/2012 VATS surgery – wedge resection of spot on lower left lung – all edges were clean …
3/2012 Began self injections in the abdomen of Leukine (immunotherapy) 14 days of one shot per day/14 days off … made it thru 4 rounds (56 shots)
5/2012 CT scan showed cancer on the left lung, between 7th/8th ribs/lower bowel area 2 separate areas of concern
5/2012 PET scan indicated cancer in the pleura around the left lung/2 areas on the lower bowel/ 1 spot in the liver
5/25/2012 Met with the oncology team to discuss options … Biological ( Interleukin 2 or IP) , Targeted therapy (Zelboraf being the oral chemo targeting the proteins that the cancer feeds off of) , Regular Chemotherapy … Reg Chemo acts to slow – ruled out … Z-boraf (quick acting) went with this as a Part I action to stop the growth of the tumors … will be doing Z-boraf for at least 4 1/2 months – evaluate the progress either continue or change to Biological stage …
6/4/12 began Z-boraf oral chemo … beginning week #3 Tuesday 6/19 …
6/28/12 scheduled to see Dr. Kendra at the James …
… so really the treatment HAS been a logical progression – removal of the melanoma, immunotherapy 2 times to build up my immune system to fight the disease … when that did not work attacking the disease itself with targeted therapy(Zelboraf) …
Thanks for the response!
Michael
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- June 18, 2012 at 2:10 am
The haphazardness is probably me more than the docs LOL … yes I am seeing Dr. Kari Kendra – Melanoma Oncologist at OSU Medical Center/The James Cancer Hospital in Columbus …
10/2010 mole on my right calf biospied
11/2010 port inserted in upper left chest
11/2010 excission of the mole/area on right calf … sentinel node biospy (clear)
12/2010 started immunotherapy – High dose Interferon treatment (20 treatments)
1/2011 finished the Interferon treatments
… good blood tests every 8 weeks thru to November 2011 …
11/2011 CT scan – showed small tumor on my lower left lung and right perotid gland
12/2011 needle biopsies of both lung/perotid gland (lung positive as melanoma/perotid gland negative)
2/3/2012 VATS surgery – wedge resection of spot on lower left lung – all edges were clean …
3/2012 Began self injections in the abdomen of Leukine (immunotherapy) 14 days of one shot per day/14 days off … made it thru 4 rounds (56 shots)
5/2012 CT scan showed cancer on the left lung, between 7th/8th ribs/lower bowel area 2 separate areas of concern
5/2012 PET scan indicated cancer in the pleura around the left lung/2 areas on the lower bowel/ 1 spot in the liver
5/25/2012 Met with the oncology team to discuss options … Biological ( Interleukin 2 or IP) , Targeted therapy (Zelboraf being the oral chemo targeting the proteins that the cancer feeds off of) , Regular Chemotherapy … Reg Chemo acts to slow – ruled out … Z-boraf (quick acting) went with this as a Part I action to stop the growth of the tumors … will be doing Z-boraf for at least 4 1/2 months – evaluate the progress either continue or change to Biological stage …
6/4/12 began Z-boraf oral chemo … beginning week #3 Tuesday 6/19 …
6/28/12 scheduled to see Dr. Kendra at the James …
… so really the treatment HAS been a logical progression – removal of the melanoma, immunotherapy 2 times to build up my immune system to fight the disease … when that did not work attacking the disease itself with targeted therapy(Zelboraf) …
Thanks for the response!
Michael
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- June 17, 2012 at 1:02 pm
HI Fella Buckeye!! I am stage 4 and I had a thoracotomy and wedge resection back in May 2010. I am on Anti PD-1 ( MDX 1106) vaccine trial at Moffitt in Florida.Good luck with your trial!! If B-raf doesn't kick it, ask about it and see if you qualify…not side effects to mention…a walk in the park! NED over 2 years.
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- June 17, 2012 at 1:02 pm
HI Fella Buckeye!! I am stage 4 and I had a thoracotomy and wedge resection back in May 2010. I am on Anti PD-1 ( MDX 1106) vaccine trial at Moffitt in Florida.Good luck with your trial!! If B-raf doesn't kick it, ask about it and see if you qualify…not side effects to mention…a walk in the park! NED over 2 years.
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- June 17, 2012 at 1:02 pm
HI Fella Buckeye!! I am stage 4 and I had a thoracotomy and wedge resection back in May 2010. I am on Anti PD-1 ( MDX 1106) vaccine trial at Moffitt in Florida.Good luck with your trial!! If B-raf doesn't kick it, ask about it and see if you qualify…not side effects to mention…a walk in the park! NED over 2 years.
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- June 17, 2012 at 3:49 pm
Dear Michael,
I felt kinship with you right away. We both have stage 4 Mel, and we both underwent a lung biopsy. There’s no telling what surgeons will do once they snap on those rubber gloves. Wasn’t that biopsy proceedure something else? My melanoma went from my left ilium to my lungs where we found it growing in four lobes, in November of ’10.I am on the BRAF and MEK inhibitors, which I call Smith & Wesson, as they work so well in making cancer kill itself. I am in my 20th, 28 day cycle at MGH in Boston. You keep that saucy attitude, you hear?
Great to have you on this board.
John Murphy
Colorado -
- June 17, 2012 at 3:49 pm
Dear Michael,
I felt kinship with you right away. We both have stage 4 Mel, and we both underwent a lung biopsy. There’s no telling what surgeons will do once they snap on those rubber gloves. Wasn’t that biopsy proceedure something else? My melanoma went from my left ilium to my lungs where we found it growing in four lobes, in November of ’10.I am on the BRAF and MEK inhibitors, which I call Smith & Wesson, as they work so well in making cancer kill itself. I am in my 20th, 28 day cycle at MGH in Boston. You keep that saucy attitude, you hear?
Great to have you on this board.
John Murphy
Colorado -
- June 17, 2012 at 3:49 pm
Dear Michael,
I felt kinship with you right away. We both have stage 4 Mel, and we both underwent a lung biopsy. There’s no telling what surgeons will do once they snap on those rubber gloves. Wasn’t that biopsy proceedure something else? My melanoma went from my left ilium to my lungs where we found it growing in four lobes, in November of ’10.I am on the BRAF and MEK inhibitors, which I call Smith & Wesson, as they work so well in making cancer kill itself. I am in my 20th, 28 day cycle at MGH in Boston. You keep that saucy attitude, you hear?
Great to have you on this board.
John Murphy
Colorado-
- June 17, 2012 at 4:05 pm
Welcome to the board, Micahel ! Sorry to meet you this way. Did they do a BRAF test when they did your lung biopsy ?
It is very, very, very important that you see MELANOMA SPECIALIST at all cost ! This cannot be emphasized enough.
Please read the results post of MY WAYNE – NOW MY "NED" (no evidence of disease) after only 7 weeks on ZELBORAF !
He too had serious issues with ZEL in the beginning, was even hospitalized for fevers, serious swelling and pain of feet/ankles, joint pain, and rash over every inch of his body, but no itching…. as time has gone on, the pain, the rash, the fevers have all gotten a LOT BETTER ! He is even singing again, and his dry wit is back !
We just came back from MDANDERSON where we learned that "ALL" of Wayne's Cancer was GONE !
I hope this is encouraging to you. SEE MY POST (SNICKERS60) below on Wayne's NED after only 7 weeks on ZEL !
May God bless you and heal you !
Nancy (devoted wife of 3 X Warrior Wayne)
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- June 17, 2012 at 4:05 pm
Welcome to the board, Micahel ! Sorry to meet you this way. Did they do a BRAF test when they did your lung biopsy ?
It is very, very, very important that you see MELANOMA SPECIALIST at all cost ! This cannot be emphasized enough.
Please read the results post of MY WAYNE – NOW MY "NED" (no evidence of disease) after only 7 weeks on ZELBORAF !
He too had serious issues with ZEL in the beginning, was even hospitalized for fevers, serious swelling and pain of feet/ankles, joint pain, and rash over every inch of his body, but no itching…. as time has gone on, the pain, the rash, the fevers have all gotten a LOT BETTER ! He is even singing again, and his dry wit is back !
We just came back from MDANDERSON where we learned that "ALL" of Wayne's Cancer was GONE !
I hope this is encouraging to you. SEE MY POST (SNICKERS60) below on Wayne's NED after only 7 weeks on ZEL !
May God bless you and heal you !
Nancy (devoted wife of 3 X Warrior Wayne)
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- June 17, 2012 at 4:05 pm
Welcome to the board, Micahel ! Sorry to meet you this way. Did they do a BRAF test when they did your lung biopsy ?
It is very, very, very important that you see MELANOMA SPECIALIST at all cost ! This cannot be emphasized enough.
Please read the results post of MY WAYNE – NOW MY "NED" (no evidence of disease) after only 7 weeks on ZELBORAF !
He too had serious issues with ZEL in the beginning, was even hospitalized for fevers, serious swelling and pain of feet/ankles, joint pain, and rash over every inch of his body, but no itching…. as time has gone on, the pain, the rash, the fevers have all gotten a LOT BETTER ! He is even singing again, and his dry wit is back !
We just came back from MDANDERSON where we learned that "ALL" of Wayne's Cancer was GONE !
I hope this is encouraging to you. SEE MY POST (SNICKERS60) below on Wayne's NED after only 7 weeks on ZEL !
May God bless you and heal you !
Nancy (devoted wife of 3 X Warrior Wayne)
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- June 17, 2012 at 10:15 pm
Hi, Michael. So glad you found this board although sorry you got to join our Stage IV club!
I am on a BRAF/MEK trial, been on the drugs for a little over four weeks. I had a period of about five days of awful side effects, including rash, mouth sores, fatigue, fever/chills, aching joints, etc. All went away except for the rash, which is much improved although I think I could win the contest for the ugliest looking legs in the universe! All blotchy and purple from the rash. Oh, also wicked sun sensitivity which persists so I am very careful about not going out doors without being covered up and slathered with sun screen.
The side effects of Zelboraf seem to wax and wane, and as you can see from the posts that others have written sometime get serious enough to warrant medical attention. So it is important to keep in close contact with your doctor as new side effects emerge or old ones get worse. I would echo the sentiments about seeing a melanoma specialist and getting BRAF tested. My general oncologist was going to put me on Zelboraf without any baseline labs, total skin check, BRAF testing, etc. which is a bit scary! I am getting my treatment now through a clinical trial at UCSF which is of course going over board with the pre-treatment testing and now the monitoring due to the research protocol, but I at least know that if anything goes awry it will be addressed in a timely manner!
Eileen L
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- June 17, 2012 at 10:15 pm
Hi, Michael. So glad you found this board although sorry you got to join our Stage IV club!
I am on a BRAF/MEK trial, been on the drugs for a little over four weeks. I had a period of about five days of awful side effects, including rash, mouth sores, fatigue, fever/chills, aching joints, etc. All went away except for the rash, which is much improved although I think I could win the contest for the ugliest looking legs in the universe! All blotchy and purple from the rash. Oh, also wicked sun sensitivity which persists so I am very careful about not going out doors without being covered up and slathered with sun screen.
The side effects of Zelboraf seem to wax and wane, and as you can see from the posts that others have written sometime get serious enough to warrant medical attention. So it is important to keep in close contact with your doctor as new side effects emerge or old ones get worse. I would echo the sentiments about seeing a melanoma specialist and getting BRAF tested. My general oncologist was going to put me on Zelboraf without any baseline labs, total skin check, BRAF testing, etc. which is a bit scary! I am getting my treatment now through a clinical trial at UCSF which is of course going over board with the pre-treatment testing and now the monitoring due to the research protocol, but I at least know that if anything goes awry it will be addressed in a timely manner!
Eileen L
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- June 17, 2012 at 10:15 pm
Hi, Michael. So glad you found this board although sorry you got to join our Stage IV club!
I am on a BRAF/MEK trial, been on the drugs for a little over four weeks. I had a period of about five days of awful side effects, including rash, mouth sores, fatigue, fever/chills, aching joints, etc. All went away except for the rash, which is much improved although I think I could win the contest for the ugliest looking legs in the universe! All blotchy and purple from the rash. Oh, also wicked sun sensitivity which persists so I am very careful about not going out doors without being covered up and slathered with sun screen.
The side effects of Zelboraf seem to wax and wane, and as you can see from the posts that others have written sometime get serious enough to warrant medical attention. So it is important to keep in close contact with your doctor as new side effects emerge or old ones get worse. I would echo the sentiments about seeing a melanoma specialist and getting BRAF tested. My general oncologist was going to put me on Zelboraf without any baseline labs, total skin check, BRAF testing, etc. which is a bit scary! I am getting my treatment now through a clinical trial at UCSF which is of course going over board with the pre-treatment testing and now the monitoring due to the research protocol, but I at least know that if anything goes awry it will be addressed in a timely manner!
Eileen L
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