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- This topic has 24 replies, 5 voices, and was last updated 11 years, 11 months ago by
tommonoli.
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- April 4, 2012 at 3:48 am
Hi Everyone,
About two weeks ago I felt like a switch had been turned on–I felt so very good. I still feel good. I haven't felt this good in years, mostly, I thought because of side effects of the many, many treatments I have had. But now I suddenly have more energy, do without naps, my brain seems to be functioning better, my appetite has returned and is even more ferocious than before, etc. .
Hi Everyone,
About two weeks ago I felt like a switch had been turned on–I felt so very good. I still feel good. I haven't felt this good in years, mostly, I thought because of side effects of the many, many treatments I have had. But now I suddenly have more energy, do without naps, my brain seems to be functioning better, my appetite has returned and is even more ferocious than before, etc. .
If you remember, my calcium several weeks ago went way up, and I ended up in the hospital. I was feeling pretty bad. Even after I got out of the hospital they could not seem to get the calcium down, and I was feeling worse and worse. I had Zometa, but two weeks after that calcium was still up. Then the "switch" went off, and I felt great. A couple of days ago I had labs again, and the calcium is now normal. Maybe it was a delayed reaction to Zometa.
One doc said that he thought my feeling good has everything to do with the calcium coming down. I don't know the cause for sure, but I'm thrilled about the "new" me.
They have no idea what caused the rise in calcium in the first place, but a special blood test was done to see if it was caused by the cancer metastases. I found out that it is not coming from the cancer! Hooray, but no one knows what caused the rise in calcium, or if it will return.
Just thought I'd share about this calcium business–I don't think I've heard about anyone else who had calcium problems.
Esther
- Replies
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- April 4, 2012 at 6:09 am
Dear Esther,
Thank you for posting and sharing your recent experiences… I am so glad to hear that you are feeling so much better– that is wonderful news!
I hope this trend continues for a very, very long time… I so admire your perseverence and strength.
Will you continue getting zometa?
Thinking of you,
Sara – CURE OM
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- April 4, 2012 at 6:09 am
Dear Esther,
Thank you for posting and sharing your recent experiences… I am so glad to hear that you are feeling so much better– that is wonderful news!
I hope this trend continues for a very, very long time… I so admire your perseverence and strength.
Will you continue getting zometa?
Thinking of you,
Sara – CURE OM
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- April 4, 2012 at 6:09 am
Dear Esther,
Thank you for posting and sharing your recent experiences… I am so glad to hear that you are feeling so much better– that is wonderful news!
I hope this trend continues for a very, very long time… I so admire your perseverence and strength.
Will you continue getting zometa?
Thinking of you,
Sara – CURE OM
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- April 4, 2012 at 7:27 am
Esther
I am so pleased for you. I know exactly how you feel . A month ago I was tired all the time used to set the alarm clock to make sure I awoke from my afternoon nap otherwise it was 8am next day! I still pushed myself but was only walk running- then I suddenly woke up.
I started to feel good after running my pace improved and I stopped sleeping in the day. I have a late complication from December s ablation – the dead liver is trying to get out of my abdo wall! Hubby is strategically aspirating the sterile pus intermittently . But I feel well its great. It makes me so appreciative of what Terry has done for me whilst I was tired for months. He worked cooked woke me fed me and cleared up. Now I can repay and enjoy doing it for him.
Enjoy it Esther and keep it coming.
Carpe diem
Lesley
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- April 4, 2012 at 7:31 am
PS They are not going to stop the Zometa are they? How often are they giving it to you. I get it when my bone markers rise (seems to be about every 4 ths) they then reinfues me to suppress all acitivity in the bones. I know they have said in papers that was not enough but I feel for my level of disease (not measurable ) one has to be a bit diplomatic!
The only OM patient I know who had a response to DTIC also started 6 weekly Zometa infusions at the same time. Maybe the response was the Zometa.
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- April 4, 2012 at 7:31 am
PS They are not going to stop the Zometa are they? How often are they giving it to you. I get it when my bone markers rise (seems to be about every 4 ths) they then reinfues me to suppress all acitivity in the bones. I know they have said in papers that was not enough but I feel for my level of disease (not measurable ) one has to be a bit diplomatic!
The only OM patient I know who had a response to DTIC also started 6 weekly Zometa infusions at the same time. Maybe the response was the Zometa.
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- April 4, 2012 at 4:39 pm
Hi Sara & Lesley & all,
I will get more Zometa, but I'm not sure whether it will be contingent upon labs showing rising calcium, or whether it will be on a time schedule regardless of what labs show.
It's really hard for me to believe that this change for the better is entirely due to high calcium coming back to normal. I haven't felt well for years–of course I've been on treatments for years; but there have been times that I have taken breaks from treatments, not sure if I felt this good during those breaks. No one mentioned calcium problems before, so I must assume that my calcium was normal during those times, but I don't think I felt this good during those times of breaks from treatments.
I just returned from a 2 1/2 mile walk, something I haven't done in a few years.
Lesley, I never heard of what you are experiencing re the liver needing to be drained. Is this common? What usually happens to necrotic tissue anyway? Especially what usually happens in the liver?
Lesley, you are a wonder in so many ways, keep it up.
Sara, your indefatigable enthusiasm is both amazing and infectious.
Esther
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- April 4, 2012 at 4:39 pm
Hi Sara & Lesley & all,
I will get more Zometa, but I'm not sure whether it will be contingent upon labs showing rising calcium, or whether it will be on a time schedule regardless of what labs show.
It's really hard for me to believe that this change for the better is entirely due to high calcium coming back to normal. I haven't felt well for years–of course I've been on treatments for years; but there have been times that I have taken breaks from treatments, not sure if I felt this good during those breaks. No one mentioned calcium problems before, so I must assume that my calcium was normal during those times, but I don't think I felt this good during those times of breaks from treatments.
I just returned from a 2 1/2 mile walk, something I haven't done in a few years.
Lesley, I never heard of what you are experiencing re the liver needing to be drained. Is this common? What usually happens to necrotic tissue anyway? Especially what usually happens in the liver?
Lesley, you are a wonder in so many ways, keep it up.
Sara, your indefatigable enthusiasm is both amazing and infectious.
Esther
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- April 4, 2012 at 6:03 pm
Esther I am a product of yours Kim's and Christine's teaching!
The necrotic tissue is usually absorbed by the body. About 2% get late complications so of course I obliged. Could have been worse it could have been bile which would have been a major problem.
I think maybe because my lesion was close to the liver capsule it was just easier for it to track out along the ablation scar.
Keep enjoying life
Lesley
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- April 4, 2012 at 6:03 pm
Esther I am a product of yours Kim's and Christine's teaching!
The necrotic tissue is usually absorbed by the body. About 2% get late complications so of course I obliged. Could have been worse it could have been bile which would have been a major problem.
I think maybe because my lesion was close to the liver capsule it was just easier for it to track out along the ablation scar.
Keep enjoying life
Lesley
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- April 4, 2012 at 6:03 pm
Esther I am a product of yours Kim's and Christine's teaching!
The necrotic tissue is usually absorbed by the body. About 2% get late complications so of course I obliged. Could have been worse it could have been bile which would have been a major problem.
I think maybe because my lesion was close to the liver capsule it was just easier for it to track out along the ablation scar.
Keep enjoying life
Lesley
-
- April 4, 2012 at 4:39 pm
Hi Sara & Lesley & all,
I will get more Zometa, but I'm not sure whether it will be contingent upon labs showing rising calcium, or whether it will be on a time schedule regardless of what labs show.
It's really hard for me to believe that this change for the better is entirely due to high calcium coming back to normal. I haven't felt well for years–of course I've been on treatments for years; but there have been times that I have taken breaks from treatments, not sure if I felt this good during those breaks. No one mentioned calcium problems before, so I must assume that my calcium was normal during those times, but I don't think I felt this good during those times of breaks from treatments.
I just returned from a 2 1/2 mile walk, something I haven't done in a few years.
Lesley, I never heard of what you are experiencing re the liver needing to be drained. Is this common? What usually happens to necrotic tissue anyway? Especially what usually happens in the liver?
Lesley, you are a wonder in so many ways, keep it up.
Sara, your indefatigable enthusiasm is both amazing and infectious.
Esther
-
- April 4, 2012 at 7:31 am
PS They are not going to stop the Zometa are they? How often are they giving it to you. I get it when my bone markers rise (seems to be about every 4 ths) they then reinfues me to suppress all acitivity in the bones. I know they have said in papers that was not enough but I feel for my level of disease (not measurable ) one has to be a bit diplomatic!
The only OM patient I know who had a response to DTIC also started 6 weekly Zometa infusions at the same time. Maybe the response was the Zometa.
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- April 4, 2012 at 7:27 am
Esther
I am so pleased for you. I know exactly how you feel . A month ago I was tired all the time used to set the alarm clock to make sure I awoke from my afternoon nap otherwise it was 8am next day! I still pushed myself but was only walk running- then I suddenly woke up.
I started to feel good after running my pace improved and I stopped sleeping in the day. I have a late complication from December s ablation – the dead liver is trying to get out of my abdo wall! Hubby is strategically aspirating the sterile pus intermittently . But I feel well its great. It makes me so appreciative of what Terry has done for me whilst I was tired for months. He worked cooked woke me fed me and cleared up. Now I can repay and enjoy doing it for him.
Enjoy it Esther and keep it coming.
Carpe diem
Lesley
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- April 4, 2012 at 7:27 am
Esther
I am so pleased for you. I know exactly how you feel . A month ago I was tired all the time used to set the alarm clock to make sure I awoke from my afternoon nap otherwise it was 8am next day! I still pushed myself but was only walk running- then I suddenly woke up.
I started to feel good after running my pace improved and I stopped sleeping in the day. I have a late complication from December s ablation – the dead liver is trying to get out of my abdo wall! Hubby is strategically aspirating the sterile pus intermittently . But I feel well its great. It makes me so appreciative of what Terry has done for me whilst I was tired for months. He worked cooked woke me fed me and cleared up. Now I can repay and enjoy doing it for him.
Enjoy it Esther and keep it coming.
Carpe diem
Lesley
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- April 6, 2012 at 1:25 am
Hi Esther,
I'm so glad you are feeling so well. Could it be the Yervoy at work? I forgot when your last infusion was.
Best wishes,
Nan
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- April 6, 2012 at 1:25 am
Hi Esther,
I'm so glad you are feeling so well. Could it be the Yervoy at work? I forgot when your last infusion was.
Best wishes,
Nan
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- April 6, 2012 at 1:25 am
Hi Esther,
I'm so glad you are feeling so well. Could it be the Yervoy at work? I forgot when your last infusion was.
Best wishes,
Nan
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- April 6, 2012 at 1:51 am
Hi Nan,
That is my fantasy, that I'm feeling good because the Yervoy is working…I almost hate to verbalize it, I might be jinxing it.
I had the last infusion of Yervoy on Jan. 13th, so it was two months before the feel-good time. But my body does everything slowly (hey, I do everything slowly), remember that it took me 22 years to metastasize from my eye. They call my cancer "indolent," and that's a pretty good description of me. So maybe it is Yervoy…
We'll find out something when I get scanned in mid-May.
Esther
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- April 6, 2012 at 1:51 am
Hi Nan,
That is my fantasy, that I'm feeling good because the Yervoy is working…I almost hate to verbalize it, I might be jinxing it.
I had the last infusion of Yervoy on Jan. 13th, so it was two months before the feel-good time. But my body does everything slowly (hey, I do everything slowly), remember that it took me 22 years to metastasize from my eye. They call my cancer "indolent," and that's a pretty good description of me. So maybe it is Yervoy…
We'll find out something when I get scanned in mid-May.
Esther
-
- April 6, 2012 at 1:51 am
Hi Nan,
That is my fantasy, that I'm feeling good because the Yervoy is working…I almost hate to verbalize it, I might be jinxing it.
I had the last infusion of Yervoy on Jan. 13th, so it was two months before the feel-good time. But my body does everything slowly (hey, I do everything slowly), remember that it took me 22 years to metastasize from my eye. They call my cancer "indolent," and that's a pretty good description of me. So maybe it is Yervoy…
We'll find out something when I get scanned in mid-May.
Esther
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