› Forums › General Melanoma Community › Considering taking a break from Keytruda
- This topic has 21 replies, 5 voices, and was last updated 7 years, 6 months ago by
JuTMSY4.
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- September 29, 2016 at 3:33 am
Hello all. It’s been quite some time since I have been on here. I have been taking Keytruda for 16 months and while it’s obviously helping it has not getting rid of the “spot” that I have been battleing for almost 6 yrs. I have immense ongoing pain in my shoulder for a solud 9 months. Pain meds really don’t touch it. After many conversations I am meeting with radiation oncologist to discuss the possibility of going at it from that direction. I am stable and I forget the term they used but Drs. feel comfortable with me coming off the drug and watching. I don’t know how comfortable I am without sone sort if “defense”. Anyone have any thoughts on this.
- Replies
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- September 29, 2016 at 6:18 am
Hi,
Might be worth doing radiation and keytruda to see if radiation helps keytruda to target the tumour.
It seems like sometimes together treatments are more powerful than you would expect looking at the results for agents on their own.
After that maybe review the decision on keytruda ?
Have heard people say many good things about radiation being helpful with pain.
Good luck
Deb
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- September 29, 2016 at 6:18 am
Hi,
Might be worth doing radiation and keytruda to see if radiation helps keytruda to target the tumour.
It seems like sometimes together treatments are more powerful than you would expect looking at the results for agents on their own.
After that maybe review the decision on keytruda ?
Have heard people say many good things about radiation being helpful with pain.
Good luck
Deb
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- September 29, 2016 at 6:18 am
Hi,
Might be worth doing radiation and keytruda to see if radiation helps keytruda to target the tumour.
It seems like sometimes together treatments are more powerful than you would expect looking at the results for agents on their own.
After that maybe review the decision on keytruda ?
Have heard people say many good things about radiation being helpful with pain.
Good luck
Deb
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- September 29, 2016 at 7:39 am
Sorry for what you are going through, Dawn. But I agree with Deb. Do both! Radiation and immunotherapy TOGETHER have been shown academically as well as by individuals on this board to provide much greater benefit when administered together, than either treatment alone. There are many such research reports on my blog….just put 'radiation and immunotherapy' in the search bubble at top left if you are interested. You can always stop Keytruda just a bit later if it doesn't help or especially…if it does! Celeste
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- September 29, 2016 at 9:38 am
Thank you ladies. That was something I have considered. Guess I’ll have to wait and see what the radiation oncologist says. It is extremely clise to my aorta so up till this point it has been treatment only because of the risks. I have been taking tramadol and aleve for pain. Any suggestions on pain relievers? Had some oxy and that didn’t touch it either so I don’t know what else to do with it. I am going to push for radiation because while I know it doesn’t guarantee it won’t come back, up until this point it’s pretty much been just that one spot. -
- September 29, 2016 at 9:38 am
Thank you ladies. That was something I have considered. Guess I’ll have to wait and see what the radiation oncologist says. It is extremely clise to my aorta so up till this point it has been treatment only because of the risks. I have been taking tramadol and aleve for pain. Any suggestions on pain relievers? Had some oxy and that didn’t touch it either so I don’t know what else to do with it. I am going to push for radiation because while I know it doesn’t guarantee it won’t come back, up until this point it’s pretty much been just that one spot. -
- September 29, 2016 at 9:38 am
Thank you ladies. That was something I have considered. Guess I’ll have to wait and see what the radiation oncologist says. It is extremely clise to my aorta so up till this point it has been treatment only because of the risks. I have been taking tramadol and aleve for pain. Any suggestions on pain relievers? Had some oxy and that didn’t touch it either so I don’t know what else to do with it. I am going to push for radiation because while I know it doesn’t guarantee it won’t come back, up until this point it’s pretty much been just that one spot.
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- September 29, 2016 at 7:39 am
Sorry for what you are going through, Dawn. But I agree with Deb. Do both! Radiation and immunotherapy TOGETHER have been shown academically as well as by individuals on this board to provide much greater benefit when administered together, than either treatment alone. There are many such research reports on my blog….just put 'radiation and immunotherapy' in the search bubble at top left if you are interested. You can always stop Keytruda just a bit later if it doesn't help or especially…if it does! Celeste
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- September 29, 2016 at 7:39 am
Sorry for what you are going through, Dawn. But I agree with Deb. Do both! Radiation and immunotherapy TOGETHER have been shown academically as well as by individuals on this board to provide much greater benefit when administered together, than either treatment alone. There are many such research reports on my blog….just put 'radiation and immunotherapy' in the search bubble at top left if you are interested. You can always stop Keytruda just a bit later if it doesn't help or especially…if it does! Celeste
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- September 29, 2016 at 8:16 pm
Hi Dawn,
Sorry to hear you are suffering. I'm chiming in because of some similarities, although cases are no doubt very different. I too have a tumor described as "encasing" an artery. This tumor has been shrinking though as one of the responders to ipi/nivo/radiation combo. My shoulder also is painful, and I take pain meds for it but this was FROM radiation damage, as two nearby tumors were blasted by high-dose radiation. What's unclear is the source of your shoulder pain. Is it tumor related? Based on my experience, adding the radiation has enhanced the response to immunotherapy, so I would stay on and see if you can benefit by the combo, if radiation is the choice. Just beware that for every action there is a reaction and collateral damage from radiation can significantly impact you and often, permanently.
Gary
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- September 29, 2016 at 8:16 pm
Hi Dawn,
Sorry to hear you are suffering. I'm chiming in because of some similarities, although cases are no doubt very different. I too have a tumor described as "encasing" an artery. This tumor has been shrinking though as one of the responders to ipi/nivo/radiation combo. My shoulder also is painful, and I take pain meds for it but this was FROM radiation damage, as two nearby tumors were blasted by high-dose radiation. What's unclear is the source of your shoulder pain. Is it tumor related? Based on my experience, adding the radiation has enhanced the response to immunotherapy, so I would stay on and see if you can benefit by the combo, if radiation is the choice. Just beware that for every action there is a reaction and collateral damage from radiation can significantly impact you and often, permanently.
Gary
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- September 29, 2016 at 8:16 pm
Hi Dawn,
Sorry to hear you are suffering. I'm chiming in because of some similarities, although cases are no doubt very different. I too have a tumor described as "encasing" an artery. This tumor has been shrinking though as one of the responders to ipi/nivo/radiation combo. My shoulder also is painful, and I take pain meds for it but this was FROM radiation damage, as two nearby tumors were blasted by high-dose radiation. What's unclear is the source of your shoulder pain. Is it tumor related? Based on my experience, adding the radiation has enhanced the response to immunotherapy, so I would stay on and see if you can benefit by the combo, if radiation is the choice. Just beware that for every action there is a reaction and collateral damage from radiation can significantly impact you and often, permanently.
Gary
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- September 30, 2016 at 1:15 am
Yes Gary you are correct there certainly is. My shoulder pain is caused from the inflammation side effect of the drug. The spot sits next to my aorta and for the last 9 months the entire left side of my chest, back, neck and arm has been in some level of pain. It seems to concentrate mostly in my shoulder and I have been unable to get any relief from it for at least the last 3 – 4 months. Which can cause other problems such as permanent damage to that area i.e. never being out of pain so at this point my thinking is that if I am gonna be in pain I want the spot gone. At least then I feel like the pain is worth it and hoping it will be gone also. Any suggestions on pain meds? Because what I taking now sure isn’t doing the trick. -
- September 30, 2016 at 1:15 am
Yes Gary you are correct there certainly is. My shoulder pain is caused from the inflammation side effect of the drug. The spot sits next to my aorta and for the last 9 months the entire left side of my chest, back, neck and arm has been in some level of pain. It seems to concentrate mostly in my shoulder and I have been unable to get any relief from it for at least the last 3 – 4 months. Which can cause other problems such as permanent damage to that area i.e. never being out of pain so at this point my thinking is that if I am gonna be in pain I want the spot gone. At least then I feel like the pain is worth it and hoping it will be gone also. Any suggestions on pain meds? Because what I taking now sure isn’t doing the trick. -
- September 30, 2016 at 1:54 am
Hi Dawn,
Originally, I went on pain meds because of two tumors, side by side, just below clavicle with one of them very near the junction of shoulder. My tumors are all large. Both were in the 8+cm range and were causing severe chronic pain, but especially in bed, and laying on that side was out of the question. So at that time I was on twice daily generic Norco (hydrocodone/acetaminophen) and when the pain got really bad my doc added fentanyl patches. Even with that I was still in pain and did not want to become dependant so I opted for radiation to destroy the two tumors. Now I have what is likely permanent tissue damage in shoulder joints because of radiation collateral damage but the pain levels are way down from before. I'm not sure what to suggest for you, except destroying your tumor that is causing pain, and hopefully you won't get the additional damage. Also, as for pain meds, the fentanyl comes in various doses and is potentially a powerful full-time pain-killer.
Gary
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- September 30, 2016 at 1:54 am
Hi Dawn,
Originally, I went on pain meds because of two tumors, side by side, just below clavicle with one of them very near the junction of shoulder. My tumors are all large. Both were in the 8+cm range and were causing severe chronic pain, but especially in bed, and laying on that side was out of the question. So at that time I was on twice daily generic Norco (hydrocodone/acetaminophen) and when the pain got really bad my doc added fentanyl patches. Even with that I was still in pain and did not want to become dependant so I opted for radiation to destroy the two tumors. Now I have what is likely permanent tissue damage in shoulder joints because of radiation collateral damage but the pain levels are way down from before. I'm not sure what to suggest for you, except destroying your tumor that is causing pain, and hopefully you won't get the additional damage. Also, as for pain meds, the fentanyl comes in various doses and is potentially a powerful full-time pain-killer.
Gary
-
- September 30, 2016 at 1:54 am
Hi Dawn,
Originally, I went on pain meds because of two tumors, side by side, just below clavicle with one of them very near the junction of shoulder. My tumors are all large. Both were in the 8+cm range and were causing severe chronic pain, but especially in bed, and laying on that side was out of the question. So at that time I was on twice daily generic Norco (hydrocodone/acetaminophen) and when the pain got really bad my doc added fentanyl patches. Even with that I was still in pain and did not want to become dependant so I opted for radiation to destroy the two tumors. Now I have what is likely permanent tissue damage in shoulder joints because of radiation collateral damage but the pain levels are way down from before. I'm not sure what to suggest for you, except destroying your tumor that is causing pain, and hopefully you won't get the additional damage. Also, as for pain meds, the fentanyl comes in various doses and is potentially a powerful full-time pain-killer.
Gary
-
- September 30, 2016 at 1:15 am
Yes Gary you are correct there certainly is. My shoulder pain is caused from the inflammation side effect of the drug. The spot sits next to my aorta and for the last 9 months the entire left side of my chest, back, neck and arm has been in some level of pain. It seems to concentrate mostly in my shoulder and I have been unable to get any relief from it for at least the last 3 – 4 months. Which can cause other problems such as permanent damage to that area i.e. never being out of pain so at this point my thinking is that if I am gonna be in pain I want the spot gone. At least then I feel like the pain is worth it and hoping it will be gone also. Any suggestions on pain meds? Because what I taking now sure isn’t doing the trick.
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- September 30, 2016 at 3:04 pm
First, I agree with others that radiation and immunotherapies can work in concert. Sometimes the radiation causes the release of the right antigens to get the keytruda induced cells moving. Similar experiences on Yervoy as well. However, there is no concrete study, so YMMV. It is worth considering, if for no other reason than pain reduction.
As to stopping Keytruda – I think there is at least a school of thought that keytruda causes a permanent change in your body so there is no longer a need for infusions. This, however, is not totally known, so it's hard to be sure.
I'd also note that there are some docs who think you can go back on it and have the same effect as if continuing. That is also worth discussing w/ your doc.
Good luck!
-
- September 30, 2016 at 3:04 pm
First, I agree with others that radiation and immunotherapies can work in concert. Sometimes the radiation causes the release of the right antigens to get the keytruda induced cells moving. Similar experiences on Yervoy as well. However, there is no concrete study, so YMMV. It is worth considering, if for no other reason than pain reduction.
As to stopping Keytruda – I think there is at least a school of thought that keytruda causes a permanent change in your body so there is no longer a need for infusions. This, however, is not totally known, so it's hard to be sure.
I'd also note that there are some docs who think you can go back on it and have the same effect as if continuing. That is also worth discussing w/ your doc.
Good luck!
-
- September 30, 2016 at 3:04 pm
First, I agree with others that radiation and immunotherapies can work in concert. Sometimes the radiation causes the release of the right antigens to get the keytruda induced cells moving. Similar experiences on Yervoy as well. However, there is no concrete study, so YMMV. It is worth considering, if for no other reason than pain reduction.
As to stopping Keytruda – I think there is at least a school of thought that keytruda causes a permanent change in your body so there is no longer a need for infusions. This, however, is not totally known, so it's hard to be sure.
I'd also note that there are some docs who think you can go back on it and have the same effect as if continuing. That is also worth discussing w/ your doc.
Good luck!
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