› Forums › Caregiver Community › Caregiver of Stage IV
- This topic has 24 replies, 4 voices, and was last updated 9 years, 2 months ago by
marta010.
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- June 13, 2016 at 8:11 pm
Hello all,
This is my first ever post, I've been reading the posts for months now, finallly "brave" enough to post. My sister in law ( SIL) 59 year old was diagnosed 3 years ago stage 3,, bottom of foot ulcerated tumor ( she thought it was a blister that wouldn't heal) It was removed and lymph nodes in left side of groin removed, "microscopic" traces in nodes, all this done at Mayo Clinic, no post treatment, just scans and check ups. August of 2015 she felt a lump in her thigh, Sept 2015 she began the Yervoy/Opdivo. She is Braf NEGATIVE. Jan 2016 those treatments were stopped. Jan 2016 3 tumors removed from her thigh. Now there is 5 tumors in the same thigh, spot on lung, one on her back, and in her pelvic bone, stage 4. In May she began IL 2 at University Of Minnesota Medical Center. We live in a VERY rural area, UM is 5 hours away. Thank GOD for the Hope Lodge, allowing me ot be there with her. First round of IL2 she did 7 bags, Capillary leak, rigors, minor vomiting. Her chest became so heavy with all the fluid and leak, O2 and BP were slow rebounding. Second round, side effects much milder, she ended at 5 bags, I think fear of the last time prevented her from pushing for more. They are delaying round 3 for 2 weeks to give her more time to recover. Through all of this she is not in any pain or discomfort from the cancer itself, thank GOD! Her oncologist told her after the bone discovery "statistically she has 2 years". Now while awaiting for round 3, scheduled for next week, a brand new ulcerated tumor on her other foot, which they didn't seem concerned about when she initially told them, now that it's ulcerated they will do a biopsy. WIll this affect her further treatments? She has never lost any weight during all of this, and last week she lost 4lbs and her appetite is disappearing. Has anyone expericend anything like this? Or is this the beginning of the end? Depression has taken hold of her, she is isolating, they gave her somethign for depression. Does this mean the IL2 is not working? Is it worth going for another round of it? Any advice or help would be much appreciated. It's heartbreaking. I hope this all made sense, and look foward to suggestions or advice. Thank you all for being so brave sharing your stories, good and bad. Melanoma SUCKS!
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- June 14, 2016 at 8:23 am
I only know what I have read about IL-2, which is very basic:
I hope someone comes on who has more up-to-date or practical experience.
I decided to reply because no one else had and you sound so much in need of contact.
I am going to start with a practical question. You say your sister-in-law has been having a rest before going back to UM for her third treatment. Who has been montoring her during this rest? Do you have regular contact with a specialist nurse or similar? Is it possible that some of her current symptoms are physical, for example deficient in something?
Secondly, you sound conflicted about the worth of the treatment. I do not know if you are conflicted, or she is, or you both are. I believe that it is important that at least the patient believes that the treatment is worthwhile, especially when it has so many side effects.
It is very hard to find the words to make my third point, so I will refer to myself. I am 56. For me, it is about quality of life. That is easy for me to say now, when Ipi has shrunk my tumours, but it was also true at the worst point, when I had been misdiagnosed as stage 4.
It is OK to battle on, fighting the disease. It is also OK to decide to concentrate on the quality of each day.
You say she has been given something for the depression. Depression meds also often have side effects.
I am thinking about the two of you.
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- June 15, 2016 at 5:02 am
Hi Moira, thank you for your reply, I was beginning to wonder if anyone would respond 🙂 I'll answer in the order your asked, When you have the IL2 treatment, you are in the hospital for 5 or 6 days, you get one bag every 8 hours, max is 14, only a handful can tolerate that many. She had 7 first round and 5 in the last round.So after the hospital stay you go home and recover for 9 days, then you go back and do it all over again. This time they gave her 16 days to regroup, I think it was more for her to mentally work up to it, the first round was horrific and she became very ill with capillary leak syndrome, common side effect of this sadly, and her oxygn levels and blood pressure wouldn't come back to normal so they had to stop treatment. This second round she did great, side effets were very mild, but the fear of getting that sick again prevented her from going on after 5 bags, not knowing of course which bag could be the amount to make her so sick again. So fear got the better of her. We saw her oncologist today, he is local. The new ulcerated spot on her foot, he looked at, but isn't wanting to even do a biopsy, due to the fact of her having an open wound while doing the treatment, too big a risk of infection. Basically, she's not in any pain, the tumors near her knee they feel like they are merging into one big tumor, and they've seem to have grown since the treatment started. But due to the fact of it being in her pelvic bone, both oncologists agree, best not to operate on any of them. He upped her dose for Depression meds today, she really has been down, understandably so. I said to her today that at some point she is going to need to decide does she want quality or quantity, her reply was " I am not near having to make that decision" Thanks for taking the time Moira, i so appreciate it.
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- June 15, 2016 at 5:02 am
Hi Moira, thank you for your reply, I was beginning to wonder if anyone would respond 🙂 I'll answer in the order your asked, When you have the IL2 treatment, you are in the hospital for 5 or 6 days, you get one bag every 8 hours, max is 14, only a handful can tolerate that many. She had 7 first round and 5 in the last round.So after the hospital stay you go home and recover for 9 days, then you go back and do it all over again. This time they gave her 16 days to regroup, I think it was more for her to mentally work up to it, the first round was horrific and she became very ill with capillary leak syndrome, common side effect of this sadly, and her oxygn levels and blood pressure wouldn't come back to normal so they had to stop treatment. This second round she did great, side effets were very mild, but the fear of getting that sick again prevented her from going on after 5 bags, not knowing of course which bag could be the amount to make her so sick again. So fear got the better of her. We saw her oncologist today, he is local. The new ulcerated spot on her foot, he looked at, but isn't wanting to even do a biopsy, due to the fact of her having an open wound while doing the treatment, too big a risk of infection. Basically, she's not in any pain, the tumors near her knee they feel like they are merging into one big tumor, and they've seem to have grown since the treatment started. But due to the fact of it being in her pelvic bone, both oncologists agree, best not to operate on any of them. He upped her dose for Depression meds today, she really has been down, understandably so. I said to her today that at some point she is going to need to decide does she want quality or quantity, her reply was " I am not near having to make that decision" Thanks for taking the time Moira, i so appreciate it.
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- June 15, 2016 at 5:02 am
Hi Moira, thank you for your reply, I was beginning to wonder if anyone would respond 🙂 I'll answer in the order your asked, When you have the IL2 treatment, you are in the hospital for 5 or 6 days, you get one bag every 8 hours, max is 14, only a handful can tolerate that many. She had 7 first round and 5 in the last round.So after the hospital stay you go home and recover for 9 days, then you go back and do it all over again. This time they gave her 16 days to regroup, I think it was more for her to mentally work up to it, the first round was horrific and she became very ill with capillary leak syndrome, common side effect of this sadly, and her oxygn levels and blood pressure wouldn't come back to normal so they had to stop treatment. This second round she did great, side effets were very mild, but the fear of getting that sick again prevented her from going on after 5 bags, not knowing of course which bag could be the amount to make her so sick again. So fear got the better of her. We saw her oncologist today, he is local. The new ulcerated spot on her foot, he looked at, but isn't wanting to even do a biopsy, due to the fact of her having an open wound while doing the treatment, too big a risk of infection. Basically, she's not in any pain, the tumors near her knee they feel like they are merging into one big tumor, and they've seem to have grown since the treatment started. But due to the fact of it being in her pelvic bone, both oncologists agree, best not to operate on any of them. He upped her dose for Depression meds today, she really has been down, understandably so. I said to her today that at some point she is going to need to decide does she want quality or quantity, her reply was " I am not near having to make that decision" Thanks for taking the time Moira, i so appreciate it.
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- June 14, 2016 at 8:23 am
I only know what I have read about IL-2, which is very basic:
I hope someone comes on who has more up-to-date or practical experience.
I decided to reply because no one else had and you sound so much in need of contact.
I am going to start with a practical question. You say your sister-in-law has been having a rest before going back to UM for her third treatment. Who has been montoring her during this rest? Do you have regular contact with a specialist nurse or similar? Is it possible that some of her current symptoms are physical, for example deficient in something?
Secondly, you sound conflicted about the worth of the treatment. I do not know if you are conflicted, or she is, or you both are. I believe that it is important that at least the patient believes that the treatment is worthwhile, especially when it has so many side effects.
It is very hard to find the words to make my third point, so I will refer to myself. I am 56. For me, it is about quality of life. That is easy for me to say now, when Ipi has shrunk my tumours, but it was also true at the worst point, when I had been misdiagnosed as stage 4.
It is OK to battle on, fighting the disease. It is also OK to decide to concentrate on the quality of each day.
You say she has been given something for the depression. Depression meds also often have side effects.
I am thinking about the two of you.
-
- June 14, 2016 at 8:23 am
I only know what I have read about IL-2, which is very basic:
I hope someone comes on who has more up-to-date or practical experience.
I decided to reply because no one else had and you sound so much in need of contact.
I am going to start with a practical question. You say your sister-in-law has been having a rest before going back to UM for her third treatment. Who has been montoring her during this rest? Do you have regular contact with a specialist nurse or similar? Is it possible that some of her current symptoms are physical, for example deficient in something?
Secondly, you sound conflicted about the worth of the treatment. I do not know if you are conflicted, or she is, or you both are. I believe that it is important that at least the patient believes that the treatment is worthwhile, especially when it has so many side effects.
It is very hard to find the words to make my third point, so I will refer to myself. I am 56. For me, it is about quality of life. That is easy for me to say now, when Ipi has shrunk my tumours, but it was also true at the worst point, when I had been misdiagnosed as stage 4.
It is OK to battle on, fighting the disease. It is also OK to decide to concentrate on the quality of each day.
You say she has been given something for the depression. Depression meds also often have side effects.
I am thinking about the two of you.
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- June 14, 2016 at 12:00 pm
The MRF website has lots of resources in addition to this wonderful discussion group. I looked at the map of treatment centers (http://mrf.findmytreatmentcenter.com/) and it doesn't look like UM is a melanoma treatment center. Melanoma is a different cancer so a general oncologist won't do. IL-2 is a difficult treatment and is usually suggested after other treatments have been tried. Any chance you can get back to Mayo? Is your current oncologist working in conjunction with a specialist there.
and you're right, melanoma really sucks
fen
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- June 14, 2016 at 12:00 pm
The MRF website has lots of resources in addition to this wonderful discussion group. I looked at the map of treatment centers (http://mrf.findmytreatmentcenter.com/) and it doesn't look like UM is a melanoma treatment center. Melanoma is a different cancer so a general oncologist won't do. IL-2 is a difficult treatment and is usually suggested after other treatments have been tried. Any chance you can get back to Mayo? Is your current oncologist working in conjunction with a specialist there.
and you're right, melanoma really sucks
fen
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- June 14, 2016 at 7:56 pm
Hi – I don't have anything to add about IL2 treatments and side effects. That's about the only treatment my husband – also Stage IV – hasn't experienced. We live in the Minneapolis area and treat with the U of MN providers in consultation with Mayo Clinic. Both teams work very well together, consult regularly and share knowledge. Let me know if you need any assistance when you are in town – message me privately or at my e-mail: [email protected]. Take care.
Ann
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- June 14, 2016 at 7:56 pm
Hi – I don't have anything to add about IL2 treatments and side effects. That's about the only treatment my husband – also Stage IV – hasn't experienced. We live in the Minneapolis area and treat with the U of MN providers in consultation with Mayo Clinic. Both teams work very well together, consult regularly and share knowledge. Let me know if you need any assistance when you are in town – message me privately or at my e-mail: [email protected]. Take care.
Ann
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- June 14, 2016 at 7:56 pm
Hi – I don't have anything to add about IL2 treatments and side effects. That's about the only treatment my husband – also Stage IV – hasn't experienced. We live in the Minneapolis area and treat with the U of MN providers in consultation with Mayo Clinic. Both teams work very well together, consult regularly and share knowledge. Let me know if you need any assistance when you are in town – message me privately or at my e-mail: [email protected]. Take care.
Ann
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- June 15, 2016 at 4:49 am
Yes I know on the website it doesn't say so, but the University of Minnesota is doign the IL2, we've been twice alreday. The Dr's do a lot of research,ad their team is wonderful. Her insurance wouldn't allow Mayo, and her local oncologist is the one that referred her to the U of M. He stays in touch with the Dr's at the U, they are working together. Thank you for your reply, it's appreciated . Here is the link to U of M, it has to be a specialized place that does the IL2 treatment. https://www.mhealth.org/care/conditions/skin-cancer-adult
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- June 15, 2016 at 4:49 am
Yes I know on the website it doesn't say so, but the University of Minnesota is doign the IL2, we've been twice alreday. The Dr's do a lot of research,ad their team is wonderful. Her insurance wouldn't allow Mayo, and her local oncologist is the one that referred her to the U of M. He stays in touch with the Dr's at the U, they are working together. Thank you for your reply, it's appreciated . Here is the link to U of M, it has to be a specialized place that does the IL2 treatment. https://www.mhealth.org/care/conditions/skin-cancer-adult
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- June 15, 2016 at 4:49 am
Yes I know on the website it doesn't say so, but the University of Minnesota is doign the IL2, we've been twice alreday. The Dr's do a lot of research,ad their team is wonderful. Her insurance wouldn't allow Mayo, and her local oncologist is the one that referred her to the U of M. He stays in touch with the Dr's at the U, they are working together. Thank you for your reply, it's appreciated . Here is the link to U of M, it has to be a specialized place that does the IL2 treatment. https://www.mhealth.org/care/conditions/skin-cancer-adult
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- June 14, 2016 at 12:00 pm
The MRF website has lots of resources in addition to this wonderful discussion group. I looked at the map of treatment centers (http://mrf.findmytreatmentcenter.com/) and it doesn't look like UM is a melanoma treatment center. Melanoma is a different cancer so a general oncologist won't do. IL-2 is a difficult treatment and is usually suggested after other treatments have been tried. Any chance you can get back to Mayo? Is your current oncologist working in conjunction with a specialist there.
and you're right, melanoma really sucks
fen
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- June 14, 2016 at 7:57 pm
Hi – I don't have anything to add about IL2 treatments and side effects. That's about the only treatment my husband – also Stage IV – hasn't experienced. We live in the Minneapolis area and treat with the U of MN providers in consultation with Mayo Clinic. Both teams work very well together, consult regularly and share knowledge. Let me know if you need any assistance when you are in town – message me privately or at my e-mail: [email protected]. Take care.
Ann
-
- June 14, 2016 at 7:57 pm
Hi – I don't have anything to add about IL2 treatments and side effects. That's about the only treatment my husband – also Stage IV – hasn't experienced. We live in the Minneapolis area and treat with the U of MN providers in consultation with Mayo Clinic. Both teams work very well together, consult regularly and share knowledge. Let me know if you need any assistance when you are in town – message me privately or at my e-mail: [email protected]. Take care.
Ann
-
- June 14, 2016 at 7:57 pm
Hi – I don't have anything to add about IL2 treatments and side effects. That's about the only treatment my husband – also Stage IV – hasn't experienced. We live in the Minneapolis area and treat with the U of MN providers in consultation with Mayo Clinic. Both teams work very well together, consult regularly and share knowledge. Let me know if you need any assistance when you are in town – message me privately or at my e-mail: [email protected]. Take care.
Ann
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