› Forums › General Melanoma Community › Feeling Down
- This topic has 21 replies, 6 voices, and was last updated 8 years, 4 months ago by
dfeng.
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- December 24, 2015 at 8:28 am
Hi everyone first I would like to wish all of you a Merry Christmas. Hoping we can forget this horrible disease for a few days.
After the sadly pass of Artie I seem to have felt so down and then another one of our family friends young lady with children has too passed away with cancer. She battled ten years god bless her. I just feel so sad and cannot stop thinking of what next.
my tumours are in my liver, lungs 3 in liver 1 in each lung and I believe in lymph nodes , been on ippi with good results had scan results still no change stable no activity in brain. Was going today Christmas Eve to get results but my consultant kindly called me yesterday with results. I am so pleased for that but feel sad. I am braf negative so not got much choice in treatments so glad ipi worked. I do not understand that they will not give me maintance dose of ipi if it worked well . I was told PD1 next but due to me not having much choice why not give me top up of ippi . People who did well on trials on ippi got top up of treatment and did very well. Feel like it is all to do with cost of treatment here in Uk not that am young and healthy at moment to take more treatment so why not give it. I had not much side effects apart from itchy and bowle movements but not too bad.
well sorry for the moan but just feeling like this at present, am still working and doing things as normal
Love too you all and God Bless us xx
scooby❤️❤️
- Replies
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- December 24, 2015 at 12:43 pm
Hey Scooby,
don't feel bad for feeling sad. I too feel down. I don't feel the excitement anymore around the holidays as this disease is always on my mind. Last thing I think about before going to bed and the first thing on my mind as I wake up. I'm already stressing out over the scans coming up next month. I want to stay positive thou, because my mom keeps telling me that negative thoughts are self destructing. Sure, this disease has taken a lot from all of us, like joy, inner peace and so much more, but we need to be positive and don't let it take over our lives. Let's take it one day at a time and don't think about the "negative" future.
I wish you a very merry Christmas and may God bless us all.
Rosa
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- December 24, 2015 at 12:43 pm
Hey Scooby,
don't feel bad for feeling sad. I too feel down. I don't feel the excitement anymore around the holidays as this disease is always on my mind. Last thing I think about before going to bed and the first thing on my mind as I wake up. I'm already stressing out over the scans coming up next month. I want to stay positive thou, because my mom keeps telling me that negative thoughts are self destructing. Sure, this disease has taken a lot from all of us, like joy, inner peace and so much more, but we need to be positive and don't let it take over our lives. Let's take it one day at a time and don't think about the "negative" future.
I wish you a very merry Christmas and may God bless us all.
Rosa
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- December 24, 2015 at 12:43 pm
Hey Scooby,
don't feel bad for feeling sad. I too feel down. I don't feel the excitement anymore around the holidays as this disease is always on my mind. Last thing I think about before going to bed and the first thing on my mind as I wake up. I'm already stressing out over the scans coming up next month. I want to stay positive thou, because my mom keeps telling me that negative thoughts are self destructing. Sure, this disease has taken a lot from all of us, like joy, inner peace and so much more, but we need to be positive and don't let it take over our lives. Let's take it one day at a time and don't think about the "negative" future.
I wish you a very merry Christmas and may God bless us all.
Rosa
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- December 24, 2015 at 4:42 pm
Yea I get down cause of my Mel and I'm only 3b. I found the best way to feel better is to exercise-take a walk/ run. It makes your brain concentrate on the moving and not ruminating. I also go out and try to serve others-soup kitchen, helping neighbors move snow, childcare at church. It helps me concentrate on others opposed to concentrating on myself. Hope this helps.
Toby
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- December 24, 2015 at 6:05 pm
Hi guys thank you for your support I think we all need it at times . My family are great but really do not understand deep down what you actually feel like inside. Doing activities is good , I have a dog so do walk a lot. I understand awaiting scans again when you have a 3 month gap it's nice for the first 2 but then the last month seems to drag and after my scans still have to wait 3 weeks for results. So do understand how you feel.
scooby
Take care all ❤️❤️
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- December 24, 2015 at 6:05 pm
Hi guys thank you for your support I think we all need it at times . My family are great but really do not understand deep down what you actually feel like inside. Doing activities is good , I have a dog so do walk a lot. I understand awaiting scans again when you have a 3 month gap it's nice for the first 2 but then the last month seems to drag and after my scans still have to wait 3 weeks for results. So do understand how you feel.
scooby
Take care all ❤️❤️
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- December 24, 2015 at 6:05 pm
Hi guys thank you for your support I think we all need it at times . My family are great but really do not understand deep down what you actually feel like inside. Doing activities is good , I have a dog so do walk a lot. I understand awaiting scans again when you have a 3 month gap it's nice for the first 2 but then the last month seems to drag and after my scans still have to wait 3 weeks for results. So do understand how you feel.
scooby
Take care all ❤️❤️
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- December 24, 2015 at 4:42 pm
Yea I get down cause of my Mel and I'm only 3b. I found the best way to feel better is to exercise-take a walk/ run. It makes your brain concentrate on the moving and not ruminating. I also go out and try to serve others-soup kitchen, helping neighbors move snow, childcare at church. It helps me concentrate on others opposed to concentrating on myself. Hope this helps.
Toby
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- December 24, 2015 at 4:42 pm
Yea I get down cause of my Mel and I'm only 3b. I found the best way to feel better is to exercise-take a walk/ run. It makes your brain concentrate on the moving and not ruminating. I also go out and try to serve others-soup kitchen, helping neighbors move snow, childcare at church. It helps me concentrate on others opposed to concentrating on myself. Hope this helps.
Toby
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- December 24, 2015 at 9:22 pm
Hey scoobie
hope by now you are feeling a bit better. Happy Xmas to you and your family. I think it is amazing that ipi worked for you. It only works on about 15% of ppl. I don't know why they wouldn't give you the full 4 doses. But great that you will get opdivo or keytruda as well. I am in Australia so very lucky to have good Medicare that pays for a lot of things. I think the UK also has a health care system to be proud of. Maybe it's the side effects of ipi they are worried about? I had two doses of it then 17 keytruda but I had really bad side effects and I had to stop. My lung tumour has reduced heaps and no new Mets and I hope for you that you have at least as good results. It's ok to be down, just try to take it one step at a time, as hard as that seems.
Everyone on this site understands about being down and that each of us finds their own way to deal with it. If it helps to talk about it here go right ahead. That's what we're here for.
best wishes
anne-Louise
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- December 24, 2015 at 9:22 pm
Hey scoobie
hope by now you are feeling a bit better. Happy Xmas to you and your family. I think it is amazing that ipi worked for you. It only works on about 15% of ppl. I don't know why they wouldn't give you the full 4 doses. But great that you will get opdivo or keytruda as well. I am in Australia so very lucky to have good Medicare that pays for a lot of things. I think the UK also has a health care system to be proud of. Maybe it's the side effects of ipi they are worried about? I had two doses of it then 17 keytruda but I had really bad side effects and I had to stop. My lung tumour has reduced heaps and no new Mets and I hope for you that you have at least as good results. It's ok to be down, just try to take it one step at a time, as hard as that seems.
Everyone on this site understands about being down and that each of us finds their own way to deal with it. If it helps to talk about it here go right ahead. That's what we're here for.
best wishes
anne-Louise
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- December 24, 2015 at 9:22 pm
Hey scoobie
hope by now you are feeling a bit better. Happy Xmas to you and your family. I think it is amazing that ipi worked for you. It only works on about 15% of ppl. I don't know why they wouldn't give you the full 4 doses. But great that you will get opdivo or keytruda as well. I am in Australia so very lucky to have good Medicare that pays for a lot of things. I think the UK also has a health care system to be proud of. Maybe it's the side effects of ipi they are worried about? I had two doses of it then 17 keytruda but I had really bad side effects and I had to stop. My lung tumour has reduced heaps and no new Mets and I hope for you that you have at least as good results. It's ok to be down, just try to take it one step at a time, as hard as that seems.
Everyone on this site understands about being down and that each of us finds their own way to deal with it. If it helps to talk about it here go right ahead. That's what we're here for.
best wishes
anne-Louise
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- December 25, 2015 at 11:19 pm
Hi Anne- Louise happy Xmas to you too, thanks for message it does get too you now and then. I think due to a bad month things have got on top of me..
I did have all 4 doses of ippi, that's why I cannot understand why not give me top ups if it worked well rather than just not be on any treatment at all and waiting to see what happens. There is no good trials for me either here too. My scans are stable which am praying it stays that way for a long time.
good that your tumours have responded to treatment how much have they shrunk on keytruda.
thank you for message it means a lot. I did send another but did not go on so if it appears am sorry
scooby
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- December 25, 2015 at 11:19 pm
Hi Anne- Louise happy Xmas to you too, thanks for message it does get too you now and then. I think due to a bad month things have got on top of me..
I did have all 4 doses of ippi, that's why I cannot understand why not give me top ups if it worked well rather than just not be on any treatment at all and waiting to see what happens. There is no good trials for me either here too. My scans are stable which am praying it stays that way for a long time.
good that your tumours have responded to treatment how much have they shrunk on keytruda.
thank you for message it means a lot. I did send another but did not go on so if it appears am sorry
scooby
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- December 25, 2015 at 11:19 pm
Hi Anne- Louise happy Xmas to you too, thanks for message it does get too you now and then. I think due to a bad month things have got on top of me..
I did have all 4 doses of ippi, that's why I cannot understand why not give me top ups if it worked well rather than just not be on any treatment at all and waiting to see what happens. There is no good trials for me either here too. My scans are stable which am praying it stays that way for a long time.
good that your tumours have responded to treatment how much have they shrunk on keytruda.
thank you for message it means a lot. I did send another but did not go on so if it appears am sorry
scooby
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- December 29, 2015 at 2:35 am
Hey Scooby,
It's understandable that you might feel a little down at this time of the year. Let me give you a little positivity. 🙂
I got the 4 treatments of ipi last winter. It stabilized things for a while, especially a small met in my lung. But when some new small spots appeared on my skin, and a CT revealed several more small spots in the lung, my doctor decided it was time for Keytruda. I started in July.
I had another scan in September, and when I went to see my new oncologist (my old one had moved from the area), she pulled up the radiologist's report and started to go over it with me. I tried, but couldn't hold back the tears. Everything in the lung had decreased in size. We had already seen the skin spots getting lighter in color, softer and smaller. We noticed that after one dose of Keytruda.
I go back for another scan this Thursday, and I'm hoping that things are moving in the right direction. So if your doctor wants you to do a PD-1, don't cling to ipi, go for the PD-1. The side effects aren't as bad, either. I've had a mild rash that comes and goes, and has never been bad enough for steroids (I was on steroids for something like 3-4 months with ipi). Some mornings when I get up, my feet and ankles hurt, and sometimes my knees, but it mostly goes away once I'm up and moving. And I get tired a little easier now.
Have a Happy New Year! I'll be back next week to give a report on my scan. I'm positive it's going to be good.
-Bill
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- December 29, 2015 at 2:35 am
Hey Scooby,
It's understandable that you might feel a little down at this time of the year. Let me give you a little positivity. 🙂
I got the 4 treatments of ipi last winter. It stabilized things for a while, especially a small met in my lung. But when some new small spots appeared on my skin, and a CT revealed several more small spots in the lung, my doctor decided it was time for Keytruda. I started in July.
I had another scan in September, and when I went to see my new oncologist (my old one had moved from the area), she pulled up the radiologist's report and started to go over it with me. I tried, but couldn't hold back the tears. Everything in the lung had decreased in size. We had already seen the skin spots getting lighter in color, softer and smaller. We noticed that after one dose of Keytruda.
I go back for another scan this Thursday, and I'm hoping that things are moving in the right direction. So if your doctor wants you to do a PD-1, don't cling to ipi, go for the PD-1. The side effects aren't as bad, either. I've had a mild rash that comes and goes, and has never been bad enough for steroids (I was on steroids for something like 3-4 months with ipi). Some mornings when I get up, my feet and ankles hurt, and sometimes my knees, but it mostly goes away once I'm up and moving. And I get tired a little easier now.
Have a Happy New Year! I'll be back next week to give a report on my scan. I'm positive it's going to be good.
-Bill
-
- December 29, 2015 at 2:35 am
Hey Scooby,
It's understandable that you might feel a little down at this time of the year. Let me give you a little positivity. 🙂
I got the 4 treatments of ipi last winter. It stabilized things for a while, especially a small met in my lung. But when some new small spots appeared on my skin, and a CT revealed several more small spots in the lung, my doctor decided it was time for Keytruda. I started in July.
I had another scan in September, and when I went to see my new oncologist (my old one had moved from the area), she pulled up the radiologist's report and started to go over it with me. I tried, but couldn't hold back the tears. Everything in the lung had decreased in size. We had already seen the skin spots getting lighter in color, softer and smaller. We noticed that after one dose of Keytruda.
I go back for another scan this Thursday, and I'm hoping that things are moving in the right direction. So if your doctor wants you to do a PD-1, don't cling to ipi, go for the PD-1. The side effects aren't as bad, either. I've had a mild rash that comes and goes, and has never been bad enough for steroids (I was on steroids for something like 3-4 months with ipi). Some mornings when I get up, my feet and ankles hurt, and sometimes my knees, but it mostly goes away once I'm up and moving. And I get tired a little easier now.
Have a Happy New Year! I'll be back next week to give a report on my scan. I'm positive it's going to be good.
-Bill
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- December 29, 2015 at 4:12 pm
hang in there, there will be more medcine and treatment avaiable.
I was not in good shape either. Today I will be admitted and start the second trail treatment.
The trail I am in almost killed two patients in a row. So it takes me a lot more time to be enrolled.
Just hope it kills the tumor too. I can bear the side effect.
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- December 29, 2015 at 4:12 pm
hang in there, there will be more medcine and treatment avaiable.
I was not in good shape either. Today I will be admitted and start the second trail treatment.
The trail I am in almost killed two patients in a row. So it takes me a lot more time to be enrolled.
Just hope it kills the tumor too. I can bear the side effect.
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- December 29, 2015 at 4:12 pm
hang in there, there will be more medcine and treatment avaiable.
I was not in good shape either. Today I will be admitted and start the second trail treatment.
The trail I am in almost killed two patients in a row. So it takes me a lot more time to be enrolled.
Just hope it kills the tumor too. I can bear the side effect.
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