› Forums › General Melanoma Community › not sure how much more I can take…
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ecc26.
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- July 26, 2016 at 8:04 pm
Due for a 3rd round of Ipi/PD-1 on Monday with a pre-infusion appointment on Frday. Since the last infusion I've had multiple problems (gastric pain, back pain, constipation, etc). Some I can guess where they're coming from (opioids and constipation for example), but every time I seem to solve one problem, seems like I just cycle back to the beginning and start over. Like this morning, pretty confident I got the constipation taken care of (and haven't had any opioids for a few days), but my back still hurts, and while I was able to eat a light breakfast and lunch (cereal, 2 small cucumbers, and a handful of fresh berries) the gastric pain has started in again, which is part of what lead to my spending so much time in the hospital last week. I just don't know how much longer I can do this combo with everything I've got going on. I'm looking into a medical leave from work, but even that gets tricky considering I teach at a University and classes will start before too much longer. I'm the only one in the department who teaches my fall (or spring) courses- there isn't anyone to step in for me and I don't want to let the students down.
I've already failed both Ipi and PD-1, so I was never all that hopeful for the combo, but it seemed like my only option if the trial failed (which it did). I've felt so poorly that I haven't been able to research other options and I'm looking for some help.
As of now, I've been through every FDA approved option for stage 4. Does anyone out there have some suggestions for a next step? I've already looked into TIL and was declined.
-Eva
- Replies
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- July 26, 2016 at 9:03 pm
Hi Eva – I'm not a mel target, only a family member, so I can't comment on what is possible for your next treatment. But I would urge you to take the medical leave from work if you think you need it. Take the time to pamper yourself, have a bit of fun when you're feeling good, rest, recuperate, research, etc. and make yourself the most important person in your universe for a while. Your students will get by (their problems are not yours) and you will most definitely not be letting anyone down!
My heart and best thoughts always go out to you!
Barb
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- July 26, 2016 at 9:03 pm
Hi Eva – I'm not a mel target, only a family member, so I can't comment on what is possible for your next treatment. But I would urge you to take the medical leave from work if you think you need it. Take the time to pamper yourself, have a bit of fun when you're feeling good, rest, recuperate, research, etc. and make yourself the most important person in your universe for a while. Your students will get by (their problems are not yours) and you will most definitely not be letting anyone down!
My heart and best thoughts always go out to you!
Barb
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- July 26, 2016 at 9:03 pm
Hi Eva – I'm not a mel target, only a family member, so I can't comment on what is possible for your next treatment. But I would urge you to take the medical leave from work if you think you need it. Take the time to pamper yourself, have a bit of fun when you're feeling good, rest, recuperate, research, etc. and make yourself the most important person in your universe for a while. Your students will get by (their problems are not yours) and you will most definitely not be letting anyone down!
My heart and best thoughts always go out to you!
Barb
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- July 26, 2016 at 9:34 pm
Hi Eva,
I too would recommend just taking care of you right now, and not worrying about your student load. I've worked at universities too (both teaching and staff) and last–minute course cancellations are common. People deal. The Big Question is, does it stress you out more to cancel fall semester or to teach it? High stress/anxiety could be playing a bigger factor than you realize in your response to the combo infusions, and that's got to be your highest priority right now. Just getting through your 4 infusions so you know you did what you could…
The good news is that you sound really in tune to your body and its needs, and I am finding for myself that it's a day-to-day call what's best for smoothing out my system, etc. Natural if at all possible is the way to go rather than medication that leads to side effects that lead to more side effects, etc. I try to drink plenty of water, been advised to eat prunes and the like, throw a tablespoon of fiber powder in at least one glass of water or smoothie a day, and try, try, try to sleep and have quiet time as much as possible.
Also, try to hold onto hope for the combo as it does sound like a significant boost in possibility than any one immuno alone…we're all just trying to buy time while "they" figure out the best mix & match combo's. In the meantime, be easy on yourself today.
Glad you reached out 🙂
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- July 26, 2016 at 9:34 pm
Hi Eva,
I too would recommend just taking care of you right now, and not worrying about your student load. I've worked at universities too (both teaching and staff) and last–minute course cancellations are common. People deal. The Big Question is, does it stress you out more to cancel fall semester or to teach it? High stress/anxiety could be playing a bigger factor than you realize in your response to the combo infusions, and that's got to be your highest priority right now. Just getting through your 4 infusions so you know you did what you could…
The good news is that you sound really in tune to your body and its needs, and I am finding for myself that it's a day-to-day call what's best for smoothing out my system, etc. Natural if at all possible is the way to go rather than medication that leads to side effects that lead to more side effects, etc. I try to drink plenty of water, been advised to eat prunes and the like, throw a tablespoon of fiber powder in at least one glass of water or smoothie a day, and try, try, try to sleep and have quiet time as much as possible.
Also, try to hold onto hope for the combo as it does sound like a significant boost in possibility than any one immuno alone…we're all just trying to buy time while "they" figure out the best mix & match combo's. In the meantime, be easy on yourself today.
Glad you reached out 🙂
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- July 26, 2016 at 9:34 pm
Hi Eva,
I too would recommend just taking care of you right now, and not worrying about your student load. I've worked at universities too (both teaching and staff) and last–minute course cancellations are common. People deal. The Big Question is, does it stress you out more to cancel fall semester or to teach it? High stress/anxiety could be playing a bigger factor than you realize in your response to the combo infusions, and that's got to be your highest priority right now. Just getting through your 4 infusions so you know you did what you could…
The good news is that you sound really in tune to your body and its needs, and I am finding for myself that it's a day-to-day call what's best for smoothing out my system, etc. Natural if at all possible is the way to go rather than medication that leads to side effects that lead to more side effects, etc. I try to drink plenty of water, been advised to eat prunes and the like, throw a tablespoon of fiber powder in at least one glass of water or smoothie a day, and try, try, try to sleep and have quiet time as much as possible.
Also, try to hold onto hope for the combo as it does sound like a significant boost in possibility than any one immuno alone…we're all just trying to buy time while "they" figure out the best mix & match combo's. In the meantime, be easy on yourself today.
Glad you reached out 🙂
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- July 26, 2016 at 10:34 pm
Thank you both for your responses. I tried today to contact the person I need to for a medical leave, but got no answer and no call back- guessing they may be on vacation like so many.
As far as the class goes- I don't know what to do- as I said, there really isn't anyone else that can take over. I inderstand that it's not the end of the world to cancel the course, and they can re-assign my advisees, but I just hate to do it if I don't have to. I just also don't think I can continue the way I have been- not sleeping or eating due to stomach pain, back pain, etc.
I had problems with Ipi before and it did nothing, PD-1 failed technically last fall, though I stayed on it for a few more months before I had anything else lined up.
I haven't had much faith in this combo from the beginning as there is no data on people like me.
I was willing to try, but I really am about at my whit's end.
-Eva
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- July 26, 2016 at 10:34 pm
Thank you both for your responses. I tried today to contact the person I need to for a medical leave, but got no answer and no call back- guessing they may be on vacation like so many.
As far as the class goes- I don't know what to do- as I said, there really isn't anyone else that can take over. I inderstand that it's not the end of the world to cancel the course, and they can re-assign my advisees, but I just hate to do it if I don't have to. I just also don't think I can continue the way I have been- not sleeping or eating due to stomach pain, back pain, etc.
I had problems with Ipi before and it did nothing, PD-1 failed technically last fall, though I stayed on it for a few more months before I had anything else lined up.
I haven't had much faith in this combo from the beginning as there is no data on people like me.
I was willing to try, but I really am about at my whit's end.
-Eva
-
- July 26, 2016 at 10:34 pm
Thank you both for your responses. I tried today to contact the person I need to for a medical leave, but got no answer and no call back- guessing they may be on vacation like so many.
As far as the class goes- I don't know what to do- as I said, there really isn't anyone else that can take over. I inderstand that it's not the end of the world to cancel the course, and they can re-assign my advisees, but I just hate to do it if I don't have to. I just also don't think I can continue the way I have been- not sleeping or eating due to stomach pain, back pain, etc.
I had problems with Ipi before and it did nothing, PD-1 failed technically last fall, though I stayed on it for a few more months before I had anything else lined up.
I haven't had much faith in this combo from the beginning as there is no data on people like me.
I was willing to try, but I really am about at my whit's end.
-Eva
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- July 26, 2016 at 10:46 pm
Hi Eva,
I know, it's miserable being miserable and you have expressed a lot of misery lately. The thing is, the alternative is worse, and why most all of put up with a certain amount suffering at various times in our treatments. I failed ipi & pembro as single agents, but have had a partial response to the combo along with adding radiation. Others have responded to the combo where single agents have failed. Since you are more than halfway through the dual agent part, I would hang in there. Once you go on nivo only, you may see many of the side-effects diminish. Also, I'm on opioids too for various trouble spots including back. My doctors all agree a mild addiction that really improves quality of life is a small price to pay. I have found a mild natural herbal tea from Celestial called "Smooth Move" a perfect cure for that constipation and its surprising how many other gastric related issues are simply tied to the constipation. The decision to go back to school is a personal one, I admire your dedication to your students, but also agree stress helps nothing, but if you really enjoy teaching, getting your mind off this awful disease could actually help.
Gary
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- July 27, 2016 at 1:32 am
thank you for your response. I know well the misery that various treatments can cause. I just can't work and do this at the same time, hence the possible leave of absence. My hope is to get through this and still be able to do my class, but I'm still skeptical about the combo and always like to have a back-up plan. There's no way I could do my course with the side effects I'm having right now. I'll talk to my Dr. on Friday, and hopefully by then will have some idea of the possibility of a medical leave. Good tip about the "smooth move" tea. I'll look for it- I've been avoiding the opioids for a couple of days to try and ward off the constipation (and they make me nauseated, wwhich means I can't function well) but my back has definitely been suffering as a result.
I know I've been complaining a lot lately, and thank everyone for their support. I've been lucky for over 5 years, and this is like being sent back to the beginning. At diagnosis in 2011 (3B) I was given a 50% chance of still being alive in 10 years. Just feels like I'm not going to make it that far sometimes.
-Eva
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- July 27, 2016 at 1:32 am
thank you for your response. I know well the misery that various treatments can cause. I just can't work and do this at the same time, hence the possible leave of absence. My hope is to get through this and still be able to do my class, but I'm still skeptical about the combo and always like to have a back-up plan. There's no way I could do my course with the side effects I'm having right now. I'll talk to my Dr. on Friday, and hopefully by then will have some idea of the possibility of a medical leave. Good tip about the "smooth move" tea. I'll look for it- I've been avoiding the opioids for a couple of days to try and ward off the constipation (and they make me nauseated, wwhich means I can't function well) but my back has definitely been suffering as a result.
I know I've been complaining a lot lately, and thank everyone for their support. I've been lucky for over 5 years, and this is like being sent back to the beginning. At diagnosis in 2011 (3B) I was given a 50% chance of still being alive in 10 years. Just feels like I'm not going to make it that far sometimes.
-Eva
-
- July 27, 2016 at 1:32 am
thank you for your response. I know well the misery that various treatments can cause. I just can't work and do this at the same time, hence the possible leave of absence. My hope is to get through this and still be able to do my class, but I'm still skeptical about the combo and always like to have a back-up plan. There's no way I could do my course with the side effects I'm having right now. I'll talk to my Dr. on Friday, and hopefully by then will have some idea of the possibility of a medical leave. Good tip about the "smooth move" tea. I'll look for it- I've been avoiding the opioids for a couple of days to try and ward off the constipation (and they make me nauseated, wwhich means I can't function well) but my back has definitely been suffering as a result.
I know I've been complaining a lot lately, and thank everyone for their support. I've been lucky for over 5 years, and this is like being sent back to the beginning. At diagnosis in 2011 (3B) I was given a 50% chance of still being alive in 10 years. Just feels like I'm not going to make it that far sometimes.
-Eva
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- July 27, 2016 at 4:55 pm
I looked both in the grocery store and on line for the "Smooth Move" tea and couldn't find it. I'm guessing you were talking about Celestial Seasonings (at least that's what comes up in a google search)? If there's a different company, let me know.
-Eva
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- July 27, 2016 at 4:55 pm
I looked both in the grocery store and on line for the "Smooth Move" tea and couldn't find it. I'm guessing you were talking about Celestial Seasonings (at least that's what comes up in a google search)? If there's a different company, let me know.
-Eva
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- July 27, 2016 at 4:55 pm
I looked both in the grocery store and on line for the "Smooth Move" tea and couldn't find it. I'm guessing you were talking about Celestial Seasonings (at least that's what comes up in a google search)? If there's a different company, let me know.
-Eva
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- July 28, 2016 at 12:10 am
Yes Traditional Medicinals Smooth Move, usually white and purple box. If your store doesn't have that then see if they have Yogi tea Get Regular, same stuff, both work really well.
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- July 28, 2016 at 12:10 am
Yes Traditional Medicinals Smooth Move, usually white and purple box. If your store doesn't have that then see if they have Yogi tea Get Regular, same stuff, both work really well.
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- July 28, 2016 at 12:10 am
Yes Traditional Medicinals Smooth Move, usually white and purple box. If your store doesn't have that then see if they have Yogi tea Get Regular, same stuff, both work really well.
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- July 26, 2016 at 10:46 pm
Hi Eva,
I know, it's miserable being miserable and you have expressed a lot of misery lately. The thing is, the alternative is worse, and why most all of put up with a certain amount suffering at various times in our treatments. I failed ipi & pembro as single agents, but have had a partial response to the combo along with adding radiation. Others have responded to the combo where single agents have failed. Since you are more than halfway through the dual agent part, I would hang in there. Once you go on nivo only, you may see many of the side-effects diminish. Also, I'm on opioids too for various trouble spots including back. My doctors all agree a mild addiction that really improves quality of life is a small price to pay. I have found a mild natural herbal tea from Celestial called "Smooth Move" a perfect cure for that constipation and its surprising how many other gastric related issues are simply tied to the constipation. The decision to go back to school is a personal one, I admire your dedication to your students, but also agree stress helps nothing, but if you really enjoy teaching, getting your mind off this awful disease could actually help.
Gary
-
- July 26, 2016 at 10:46 pm
Hi Eva,
I know, it's miserable being miserable and you have expressed a lot of misery lately. The thing is, the alternative is worse, and why most all of put up with a certain amount suffering at various times in our treatments. I failed ipi & pembro as single agents, but have had a partial response to the combo along with adding radiation. Others have responded to the combo where single agents have failed. Since you are more than halfway through the dual agent part, I would hang in there. Once you go on nivo only, you may see many of the side-effects diminish. Also, I'm on opioids too for various trouble spots including back. My doctors all agree a mild addiction that really improves quality of life is a small price to pay. I have found a mild natural herbal tea from Celestial called "Smooth Move" a perfect cure for that constipation and its surprising how many other gastric related issues are simply tied to the constipation. The decision to go back to school is a personal one, I admire your dedication to your students, but also agree stress helps nothing, but if you really enjoy teaching, getting your mind off this awful disease could actually help.
Gary
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- July 27, 2016 at 1:23 am
Hi again – forgot but wanted to mention that Celeste gave a link in a post just yesterday that covers Dr. Weber talking about what's new for 2016. It sure gave me some encouragement!! – especially after hearing my sister's oncologist responded "there's nothing else we can do" to the question of "what comes next if this fails?" Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.ca/2016/03/immunology-updatewebinar-for-melanoma.html
Best,
Barb
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- July 27, 2016 at 1:23 am
Hi again – forgot but wanted to mention that Celeste gave a link in a post just yesterday that covers Dr. Weber talking about what's new for 2016. It sure gave me some encouragement!! – especially after hearing my sister's oncologist responded "there's nothing else we can do" to the question of "what comes next if this fails?" Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.ca/2016/03/immunology-updatewebinar-for-melanoma.html
Best,
Barb
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- July 27, 2016 at 1:23 am
Hi again – forgot but wanted to mention that Celeste gave a link in a post just yesterday that covers Dr. Weber talking about what's new for 2016. It sure gave me some encouragement!! – especially after hearing my sister's oncologist responded "there's nothing else we can do" to the question of "what comes next if this fails?" Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.ca/2016/03/immunology-updatewebinar-for-melanoma.html
Best,
Barb
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- July 27, 2016 at 2:44 am
Eva-
I'm sorry you're still going through all this. I did want to tell you not to give upon combo…I know Mat progressed on ipi and then I believe Nivo as well but has responded to the combo. It may be what your immune system needs to kick it into overdrive. Also that link from Celeste's blog is great, her blog in general is good to keep up on what's going on out there. I'm going to look for you too….wishing you the best!!!
Josh
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- July 28, 2016 at 8:23 pm
Eva-
I did go back and look at Celeste's blog. I think someone else here pasted the link. There are options. I did see OX-40, LAG-3, PD-1 & MGA271 all being used in combo. I know the one thing that aggravates me as that previous treatment excludes but there are some where that is not the case. I'd be happy to dig into more details for you…not sure how much of an issue travel is for you. Hope you're getting rest and feeling better!!!
Josh
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- July 28, 2016 at 8:23 pm
Eva-
I did go back and look at Celeste's blog. I think someone else here pasted the link. There are options. I did see OX-40, LAG-3, PD-1 & MGA271 all being used in combo. I know the one thing that aggravates me as that previous treatment excludes but there are some where that is not the case. I'd be happy to dig into more details for you…not sure how much of an issue travel is for you. Hope you're getting rest and feeling better!!!
Josh
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- July 28, 2016 at 8:23 pm
Eva-
I did go back and look at Celeste's blog. I think someone else here pasted the link. There are options. I did see OX-40, LAG-3, PD-1 & MGA271 all being used in combo. I know the one thing that aggravates me as that previous treatment excludes but there are some where that is not the case. I'd be happy to dig into more details for you…not sure how much of an issue travel is for you. Hope you're getting rest and feeling better!!!
Josh
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- July 27, 2016 at 2:44 am
Eva-
I'm sorry you're still going through all this. I did want to tell you not to give upon combo…I know Mat progressed on ipi and then I believe Nivo as well but has responded to the combo. It may be what your immune system needs to kick it into overdrive. Also that link from Celeste's blog is great, her blog in general is good to keep up on what's going on out there. I'm going to look for you too….wishing you the best!!!
Josh
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- July 27, 2016 at 2:44 am
Eva-
I'm sorry you're still going through all this. I did want to tell you not to give upon combo…I know Mat progressed on ipi and then I believe Nivo as well but has responded to the combo. It may be what your immune system needs to kick it into overdrive. Also that link from Celeste's blog is great, her blog in general is good to keep up on what's going on out there. I'm going to look for you too….wishing you the best!!!
Josh
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