› Forums › Cutaneous Melanoma Community › Ipi response causing swelling and pain?
- This topic has 15 replies, 3 voices, and was last updated 10 years, 6 months ago by
ecc26.
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- October 7, 2013 at 3:28 pm
The last time I posted here, we had been informed by our oncologist that Don was having a positive response to Ipi. YAY! We had also just hosted a magical, romantic wedding for our daughter, Georgi, and had quite a celebration! And our oldest daughter, Tori, is expecting our first grandchild (a girl) at the end of this year.
The euphoria didn't last too long, as Don has swelling and lot of pain in his groin area. PCP said he didn't think it was a hernia. Oncologist said he didn't think it was the cancer. Oncology surgeon said he's 50/50 as to whether it's hernia or cancer. We do know that Don has mets in this area.
He started taking 300 mg of extended-release Tramadol, an anti-inflammatory/NSAID. I'm wondering if anyone else has had similar experience and whether NSAID has been helpful. So far, after 4 -5 days on the Tramadol, there is very little improvement. I know there are a lot of different anti-inflammatories out there. Maybe he needs more than one pill a day? I plan on asking the doctor these questions, but thought I'd see what the "real experts" have experienced.
Thanks to you all, as always, for the help and support.
Janet
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- October 7, 2013 at 5:23 pm
Could Don's abdominal pain be caused by ipi-induced colitis? Has anyone done a colonoscopy on him?
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- October 8, 2013 at 2:04 am
I can't quite tell from your profile how many doses of Ipi he got or when they ended, but it looks like he is still on Z? I haven't taken any of the BRAF inhibitors yet but I do know that for many they lose their affect around an average of 6 months down the line. You also said he appeared to have a good response from Ipi- was this based on scans? When was his last scan?
If it's been a while since the last scan (or even it hasn't been that long) maybe it's time for another one to try and see what's going on. Do you know if there were any tumors in the groin area before (or on his last scan)? Might be worth a call to check if you aren't sure.
Lymph nodes can get very large and be very painful and not necessarily be due to cancer, but a biopsy would probably be necessary to determine that.
Having said that, I finished Ipi in August, had a "new baseline" scan in early September, and also at the moment am "appearing" to have a positive response. I haven't had a repeat scan, but some of the palpable subQ tumors have been shrinking, so we hope the trend continues but aren't trusting it yet. Many of the shrinkages have been preceeded by very intense pain (often involving the muscles underneath the subQ tumor) and swelling. Sometimes it has been so bad that it has litterally made me bed ridden (in the case of tumors on my back with the pain creating the most incredible back spasms- also happened with my pectoral muscle, and abdominal muscles where there were subQ tumors overlying). I even had one at the top of my hip where the waistband of pants hits- I felt like I couldn't wear pants for a week that one hurt so much.
Most recently I had 2 areas swell incredibly and get painful where I didn't realize I had any tumors. I got very nervous that they were new tumors but when I asked about my previous scans (and asked to see them) there were visible (but not palpable) tumors in those exact locations, so in my case they were "old" tumors swelling and becoming painful. One has now gone back to being non-palpable and the other is on it's way- we'll see how they compare at my next scan.
So short answer- yes, I have had intense pain and swelling preceed tumor shrinkage. My pain/swelling seems to last about a week, then the shrinking happens over a week to 2 weeks. I have taken advil and it does help some, but generally does not eliminate the pain. I hope that this is old mets you/your doctors forgot about, but perhaps a scan possibly followed by biopsy is in order? That should at the very least determine if it's a hernia or something else.
sorry for the long response, best of luck
-eva
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- October 10, 2013 at 6:54 am
Hi Eva,
Thanks for your response. We do know that there is one tumor in Don's inguinal canal, and since the general oncology surgeon does not think it's a hernia, the oncologist is encouraged that it probably is that met, responding to the Ipi.
To clarify, Zelboraf worked for Don for only 2 months. He finished Ipi at the end of July. First scans were on September 3, and there was evidence of shrinkage and no new mets seen.
What concerns me most is that the pain is pretty debilitating, keeping him resting most of the time, as any activity (walking, bending) aggravates it. And it's been three weeks now with little relief. Oncologist says if NSAID don't work, he should use narcotics for the pain. The swelling is gone but the pain persists.
Llike you, we aren't quite "trusting" the seemingly positive results yet. What I'd give for him to have a few "good days" of feeling "normal!"
Janet
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- October 10, 2013 at 4:03 pm
My pain at times has been pretty deblitating as well, but it hasn't lasted as long as what it sounds like you're dealing with. You said the swelling has reduced, but not the pain? Is the pain the same or worse than it was when the swelling was there? If so, it may be worth having another conversation with your doctor. If the swelling is reducing, but there's no change or a worsening of pain I think an ultrasound or something might be in order to try and figure out why the pain isn't going away. You said the met was in the inguinal canal- I wonder if the swelling from the met pushed the canal open eoungh to alllow for a hernia and now that the swelling is subsiding there really is something else causing the pain?
I wish you both the best of luck and hope the pain either begins to subside or you find the reason behind it soon
-eva
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- October 10, 2013 at 4:03 pm
My pain at times has been pretty deblitating as well, but it hasn't lasted as long as what it sounds like you're dealing with. You said the swelling has reduced, but not the pain? Is the pain the same or worse than it was when the swelling was there? If so, it may be worth having another conversation with your doctor. If the swelling is reducing, but there's no change or a worsening of pain I think an ultrasound or something might be in order to try and figure out why the pain isn't going away. You said the met was in the inguinal canal- I wonder if the swelling from the met pushed the canal open eoungh to alllow for a hernia and now that the swelling is subsiding there really is something else causing the pain?
I wish you both the best of luck and hope the pain either begins to subside or you find the reason behind it soon
-eva
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- October 10, 2013 at 4:03 pm
My pain at times has been pretty deblitating as well, but it hasn't lasted as long as what it sounds like you're dealing with. You said the swelling has reduced, but not the pain? Is the pain the same or worse than it was when the swelling was there? If so, it may be worth having another conversation with your doctor. If the swelling is reducing, but there's no change or a worsening of pain I think an ultrasound or something might be in order to try and figure out why the pain isn't going away. You said the met was in the inguinal canal- I wonder if the swelling from the met pushed the canal open eoungh to alllow for a hernia and now that the swelling is subsiding there really is something else causing the pain?
I wish you both the best of luck and hope the pain either begins to subside or you find the reason behind it soon
-eva
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- October 10, 2013 at 6:54 am
Hi Eva,
Thanks for your response. We do know that there is one tumor in Don's inguinal canal, and since the general oncology surgeon does not think it's a hernia, the oncologist is encouraged that it probably is that met, responding to the Ipi.
To clarify, Zelboraf worked for Don for only 2 months. He finished Ipi at the end of July. First scans were on September 3, and there was evidence of shrinkage and no new mets seen.
What concerns me most is that the pain is pretty debilitating, keeping him resting most of the time, as any activity (walking, bending) aggravates it. And it's been three weeks now with little relief. Oncologist says if NSAID don't work, he should use narcotics for the pain. The swelling is gone but the pain persists.
Llike you, we aren't quite "trusting" the seemingly positive results yet. What I'd give for him to have a few "good days" of feeling "normal!"
Janet
-
- October 10, 2013 at 6:54 am
Hi Eva,
Thanks for your response. We do know that there is one tumor in Don's inguinal canal, and since the general oncology surgeon does not think it's a hernia, the oncologist is encouraged that it probably is that met, responding to the Ipi.
To clarify, Zelboraf worked for Don for only 2 months. He finished Ipi at the end of July. First scans were on September 3, and there was evidence of shrinkage and no new mets seen.
What concerns me most is that the pain is pretty debilitating, keeping him resting most of the time, as any activity (walking, bending) aggravates it. And it's been three weeks now with little relief. Oncologist says if NSAID don't work, he should use narcotics for the pain. The swelling is gone but the pain persists.
Llike you, we aren't quite "trusting" the seemingly positive results yet. What I'd give for him to have a few "good days" of feeling "normal!"
Janet
-
- October 8, 2013 at 2:04 am
I can't quite tell from your profile how many doses of Ipi he got or when they ended, but it looks like he is still on Z? I haven't taken any of the BRAF inhibitors yet but I do know that for many they lose their affect around an average of 6 months down the line. You also said he appeared to have a good response from Ipi- was this based on scans? When was his last scan?
If it's been a while since the last scan (or even it hasn't been that long) maybe it's time for another one to try and see what's going on. Do you know if there were any tumors in the groin area before (or on his last scan)? Might be worth a call to check if you aren't sure.
Lymph nodes can get very large and be very painful and not necessarily be due to cancer, but a biopsy would probably be necessary to determine that.
Having said that, I finished Ipi in August, had a "new baseline" scan in early September, and also at the moment am "appearing" to have a positive response. I haven't had a repeat scan, but some of the palpable subQ tumors have been shrinking, so we hope the trend continues but aren't trusting it yet. Many of the shrinkages have been preceeded by very intense pain (often involving the muscles underneath the subQ tumor) and swelling. Sometimes it has been so bad that it has litterally made me bed ridden (in the case of tumors on my back with the pain creating the most incredible back spasms- also happened with my pectoral muscle, and abdominal muscles where there were subQ tumors overlying). I even had one at the top of my hip where the waistband of pants hits- I felt like I couldn't wear pants for a week that one hurt so much.
Most recently I had 2 areas swell incredibly and get painful where I didn't realize I had any tumors. I got very nervous that they were new tumors but when I asked about my previous scans (and asked to see them) there were visible (but not palpable) tumors in those exact locations, so in my case they were "old" tumors swelling and becoming painful. One has now gone back to being non-palpable and the other is on it's way- we'll see how they compare at my next scan.
So short answer- yes, I have had intense pain and swelling preceed tumor shrinkage. My pain/swelling seems to last about a week, then the shrinking happens over a week to 2 weeks. I have taken advil and it does help some, but generally does not eliminate the pain. I hope that this is old mets you/your doctors forgot about, but perhaps a scan possibly followed by biopsy is in order? That should at the very least determine if it's a hernia or something else.
sorry for the long response, best of luck
-eva
-
- October 8, 2013 at 2:04 am
I can't quite tell from your profile how many doses of Ipi he got or when they ended, but it looks like he is still on Z? I haven't taken any of the BRAF inhibitors yet but I do know that for many they lose their affect around an average of 6 months down the line. You also said he appeared to have a good response from Ipi- was this based on scans? When was his last scan?
If it's been a while since the last scan (or even it hasn't been that long) maybe it's time for another one to try and see what's going on. Do you know if there were any tumors in the groin area before (or on his last scan)? Might be worth a call to check if you aren't sure.
Lymph nodes can get very large and be very painful and not necessarily be due to cancer, but a biopsy would probably be necessary to determine that.
Having said that, I finished Ipi in August, had a "new baseline" scan in early September, and also at the moment am "appearing" to have a positive response. I haven't had a repeat scan, but some of the palpable subQ tumors have been shrinking, so we hope the trend continues but aren't trusting it yet. Many of the shrinkages have been preceeded by very intense pain (often involving the muscles underneath the subQ tumor) and swelling. Sometimes it has been so bad that it has litterally made me bed ridden (in the case of tumors on my back with the pain creating the most incredible back spasms- also happened with my pectoral muscle, and abdominal muscles where there were subQ tumors overlying). I even had one at the top of my hip where the waistband of pants hits- I felt like I couldn't wear pants for a week that one hurt so much.
Most recently I had 2 areas swell incredibly and get painful where I didn't realize I had any tumors. I got very nervous that they were new tumors but when I asked about my previous scans (and asked to see them) there were visible (but not palpable) tumors in those exact locations, so in my case they were "old" tumors swelling and becoming painful. One has now gone back to being non-palpable and the other is on it's way- we'll see how they compare at my next scan.
So short answer- yes, I have had intense pain and swelling preceed tumor shrinkage. My pain/swelling seems to last about a week, then the shrinking happens over a week to 2 weeks. I have taken advil and it does help some, but generally does not eliminate the pain. I hope that this is old mets you/your doctors forgot about, but perhaps a scan possibly followed by biopsy is in order? That should at the very least determine if it's a hernia or something else.
sorry for the long response, best of luck
-eva
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Tagged: cutaneous melanoma
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