› Forums › General Melanoma Community › My current thinking…
- This topic has 21 replies, 7 voices, and was last updated 9 years, 2 months ago by
Mat.
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- February 3, 2017 at 7:45 pm
Good morning Friends!!
It's been awhile since I've posted. It's been a long couple of months.
I have just finished the Hep C meds and after blood tests, should be considered "cured" of Hep C (isn't that amazing!?!). While on the Hep C meds though, my joints and bones increasingly ached and became swollen. The Liver Doc I was seeing for the Hep C had never seen anything like this. But we (me, liver doc and Rock Star Mel Doc) figure somehow the Hep C treatment triggered an inflammatory arthritis. The plan was to continue the Hep C meds and the treat the inflammatory arthritis with NSAIDs and pain killers. Unfortunately, I'm now essentially handicapped as I can barely walk or sit or stand without a great deal of pain. If one joint doesn't hurt another does. I am the tin woman in the morning.
So on Monday, I'll make a pilgrimage up to Santa Monica see the Rock Star to talk about what's next. I still have a stable and small lung met, and another intransit has popped up, so Mel is still alive and well (albeit small and slow).
My original plan was to join a clinical trial for folks who have progressed while on Ipi / Pembro. I figured that this was my best shot of kicking Mel completely to the curb. But with being handicapped by the inflammatory arthritis, I'm not feeling like I have the margin anymore. So I'm thinking VATS to remove the stable lung met and WLE to remove the intransit. This will render me NED (and therefore ineligible for a clinical trial) but should give me more options to address my knees, hips, back and shoulders with steroids or ???
I've never been wild about getting into a knife fight with Mel, but… What do you think?
Grateful for this community!
Shalom!
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- February 3, 2017 at 8:53 pm
Glad you are rid of Hep C, Julie! But very sorry that it came with such a price. I certainly have never had a problem cutting melanoma out!!! Once it's gone….I figure that's good!!! Of course with NED status…treatment choices are diminished…but… If you are NED, you will have some time to get your joint pain under control….knowing that if you must….the same treatment options you have to consider now…would still be available for later use. Just my thoughts. I'm sure you and the Rock Star will create a good plan for you. Hang in there! Celeste
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- February 3, 2017 at 8:53 pm
Glad you are rid of Hep C, Julie! But very sorry that it came with such a price. I certainly have never had a problem cutting melanoma out!!! Once it's gone….I figure that's good!!! Of course with NED status…treatment choices are diminished…but… If you are NED, you will have some time to get your joint pain under control….knowing that if you must….the same treatment options you have to consider now…would still be available for later use. Just my thoughts. I'm sure you and the Rock Star will create a good plan for you. Hang in there! Celeste
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- February 3, 2017 at 8:53 pm
Glad you are rid of Hep C, Julie! But very sorry that it came with such a price. I certainly have never had a problem cutting melanoma out!!! Once it's gone….I figure that's good!!! Of course with NED status…treatment choices are diminished…but… If you are NED, you will have some time to get your joint pain under control….knowing that if you must….the same treatment options you have to consider now…would still be available for later use. Just my thoughts. I'm sure you and the Rock Star will create a good plan for you. Hang in there! Celeste
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- February 3, 2017 at 8:56 pm
Shalom Julie !
Nice to see you back posting. Did come across a nice review on inflammatory type arthritis triggered by immunotherapy.
http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys
The references are pretty up to date and include some case studies. Would you still want to go via the trial if joint probs under control ?
This might also be of interest https://rheumatologywinterclinicalsymposium.com/2017/wp-content/uploads/2016/02/RWCS-ANTIPD1-IL6arthritis-1.pdf
Can see why you would wish to minimise steroid treatment for the arthritis whilst still fighting melanoma. Maybe a rheumy might be an idea to add to your current medical line up..although getting them to talk to one another can be difficult.
Like the sound of small and slow for melanoma but shrinking would be even better…
Best of luck and sorry you had to deal with Hep C along with everything else.
Deb
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- February 3, 2017 at 8:56 pm
Shalom Julie !
Nice to see you back posting. Did come across a nice review on inflammatory type arthritis triggered by immunotherapy.
http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys
The references are pretty up to date and include some case studies. Would you still want to go via the trial if joint probs under control ?
This might also be of interest https://rheumatologywinterclinicalsymposium.com/2017/wp-content/uploads/2016/02/RWCS-ANTIPD1-IL6arthritis-1.pdf
Can see why you would wish to minimise steroid treatment for the arthritis whilst still fighting melanoma. Maybe a rheumy might be an idea to add to your current medical line up..although getting them to talk to one another can be difficult.
Like the sound of small and slow for melanoma but shrinking would be even better…
Best of luck and sorry you had to deal with Hep C along with everything else.
Deb
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- February 3, 2017 at 8:56 pm
Shalom Julie !
Nice to see you back posting. Did come across a nice review on inflammatory type arthritis triggered by immunotherapy.
http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys
The references are pretty up to date and include some case studies. Would you still want to go via the trial if joint probs under control ?
This might also be of interest https://rheumatologywinterclinicalsymposium.com/2017/wp-content/uploads/2016/02/RWCS-ANTIPD1-IL6arthritis-1.pdf
Can see why you would wish to minimise steroid treatment for the arthritis whilst still fighting melanoma. Maybe a rheumy might be an idea to add to your current medical line up..although getting them to talk to one another can be difficult.
Like the sound of small and slow for melanoma but shrinking would be even better…
Best of luck and sorry you had to deal with Hep C along with everything else.
Deb
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- February 3, 2017 at 9:06 pm
Julie,
I share your hesitation about "knife fighting" melanoma but in your situation I think I'd be having the same thoughts. I'm actually considering the same option right now in my own case. In our situations with what appears to be slow moving mel we might get a pretty significant NED period with surgery. I'm anxious to hear what your Rock Star Doc has to say.
Congrats with the Hep C status.
Brian
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- February 3, 2017 at 9:06 pm
Julie,
I share your hesitation about "knife fighting" melanoma but in your situation I think I'd be having the same thoughts. I'm actually considering the same option right now in my own case. In our situations with what appears to be slow moving mel we might get a pretty significant NED period with surgery. I'm anxious to hear what your Rock Star Doc has to say.
Congrats with the Hep C status.
Brian
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- February 3, 2017 at 9:06 pm
Julie,
I share your hesitation about "knife fighting" melanoma but in your situation I think I'd be having the same thoughts. I'm actually considering the same option right now in my own case. In our situations with what appears to be slow moving mel we might get a pretty significant NED period with surgery. I'm anxious to hear what your Rock Star Doc has to say.
Congrats with the Hep C status.
Brian
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- February 3, 2017 at 11:40 pm
When in doubt cut it out! I agree with Celeste :). Is Rock Star doc Hamid?
Jen
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- February 3, 2017 at 11:40 pm
When in doubt cut it out! I agree with Celeste :). Is Rock Star doc Hamid?
Jen
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- February 3, 2017 at 11:40 pm
When in doubt cut it out! I agree with Celeste :). Is Rock Star doc Hamid?
Jen
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- February 4, 2017 at 12:19 am
Hi julie
My main side effect from pembro was this paralysing joint /sinovitis. I had to stop pembro as I couldn't even turn my head with it let alone get out of bed ( took on average 2 hours). Did steroids for a year which helped but I had side effects from them as well. Went to rheumatologist and did mixture of ketoprofen,(antiinflammatory) plaquenil (immune suppressant malaria drug) which worked for about 3 months and gradually I got stiffer and stiffer again. Eventually I went on infusions of remicade (infliximab) which worked wonderfully but after 6 months my tumour in my lung started to progress for the first time since stopping pembro a year before. We quickly cut that out by vats as there were no other new mets. Now to be cautious and not scientifically evidence based, we stopped the remicade. I am still hurting but managing the pain with firstly the ketoprofen which does help. If it's really bad I add the plaquenil. And if it's even worse I still have the sulfasalazine to resort to which is also a low level immuno suppressant. I got that tip from Niki and my doctors were on board as soon as I mentioned it. But I have not neede it yet. I am able to work ( quite physical job) but not up to golf yet! Also I could still add some prednisone
in summary do the vats. Best thing I've done yet!
Anne-Louise
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- February 4, 2017 at 12:19 am
Hi julie
My main side effect from pembro was this paralysing joint /sinovitis. I had to stop pembro as I couldn't even turn my head with it let alone get out of bed ( took on average 2 hours). Did steroids for a year which helped but I had side effects from them as well. Went to rheumatologist and did mixture of ketoprofen,(antiinflammatory) plaquenil (immune suppressant malaria drug) which worked for about 3 months and gradually I got stiffer and stiffer again. Eventually I went on infusions of remicade (infliximab) which worked wonderfully but after 6 months my tumour in my lung started to progress for the first time since stopping pembro a year before. We quickly cut that out by vats as there were no other new mets. Now to be cautious and not scientifically evidence based, we stopped the remicade. I am still hurting but managing the pain with firstly the ketoprofen which does help. If it's really bad I add the plaquenil. And if it's even worse I still have the sulfasalazine to resort to which is also a low level immuno suppressant. I got that tip from Niki and my doctors were on board as soon as I mentioned it. But I have not neede it yet. I am able to work ( quite physical job) but not up to golf yet! Also I could still add some prednisone
in summary do the vats. Best thing I've done yet!
Anne-Louise
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- February 4, 2017 at 12:19 am
Hi julie
My main side effect from pembro was this paralysing joint /sinovitis. I had to stop pembro as I couldn't even turn my head with it let alone get out of bed ( took on average 2 hours). Did steroids for a year which helped but I had side effects from them as well. Went to rheumatologist and did mixture of ketoprofen,(antiinflammatory) plaquenil (immune suppressant malaria drug) which worked for about 3 months and gradually I got stiffer and stiffer again. Eventually I went on infusions of remicade (infliximab) which worked wonderfully but after 6 months my tumour in my lung started to progress for the first time since stopping pembro a year before. We quickly cut that out by vats as there were no other new mets. Now to be cautious and not scientifically evidence based, we stopped the remicade. I am still hurting but managing the pain with firstly the ketoprofen which does help. If it's really bad I add the plaquenil. And if it's even worse I still have the sulfasalazine to resort to which is also a low level immuno suppressant. I got that tip from Niki and my doctors were on board as soon as I mentioned it. But I have not neede it yet. I am able to work ( quite physical job) but not up to golf yet! Also I could still add some prednisone
in summary do the vats. Best thing I've done yet!
Anne-Louise
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- February 4, 2017 at 1:55 am
Hi Julie, I have been off Pembro for 5 months now and have had immune arthritis as a side effect for 11 months now. It got worse and worse until last week I could not walk… Rock Star referred me to great rheumatologist and between them decided a single dose Remicade. Boy what a relief! Off crutches and back to work. Dr. Troum (Rhuem) drained both knees and a shot of cortisone in ankle. Weened off steroids and am good to go. I’ve had a lot of Mel cut of my face and would definitely do some more in future for NED. Best of luck, Paul -
- February 4, 2017 at 1:55 am
Hi Julie, I have been off Pembro for 5 months now and have had immune arthritis as a side effect for 11 months now. It got worse and worse until last week I could not walk… Rock Star referred me to great rheumatologist and between them decided a single dose Remicade. Boy what a relief! Off crutches and back to work. Dr. Troum (Rhuem) drained both knees and a shot of cortisone in ankle. Weened off steroids and am good to go. I’ve had a lot of Mel cut of my face and would definitely do some more in future for NED. Best of luck, Paul -
- February 4, 2017 at 1:55 am
Hi Julie, I have been off Pembro for 5 months now and have had immune arthritis as a side effect for 11 months now. It got worse and worse until last week I could not walk… Rock Star referred me to great rheumatologist and between them decided a single dose Remicade. Boy what a relief! Off crutches and back to work. Dr. Troum (Rhuem) drained both knees and a shot of cortisone in ankle. Weened off steroids and am good to go. I’ve had a lot of Mel cut of my face and would definitely do some more in future for NED. Best of luck, Paul -
- February 5, 2017 at 10:49 am
Julie, sorry to hear about the arthritis. I have also developed synvonitis in my lower right leg and am seeing a rheumatologist this week. The reply posts from debwray and Jubes have provided me with some good discussion points. Will report back. Thanks.
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- February 5, 2017 at 10:49 am
Julie, sorry to hear about the arthritis. I have also developed synvonitis in my lower right leg and am seeing a rheumatologist this week. The reply posts from debwray and Jubes have provided me with some good discussion points. Will report back. Thanks.
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- February 5, 2017 at 10:49 am
Julie, sorry to hear about the arthritis. I have also developed synvonitis in my lower right leg and am seeing a rheumatologist this week. The reply posts from debwray and Jubes have provided me with some good discussion points. Will report back. Thanks.
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