Carmon in NM

I haven't tried ipi but I did a trial combining carbo taxol and temodar over the winter. After one infusion the right adrenal lesion had shrunk by 53%. At the end of the six week trial the lesion was gone and so far no recurrance.

These were six 28 day cycles.

I haven't tried ipi but I did a trial combining carbo taxol and temodar over the winter. After one infusion the right adrenal lesion had shrunk by 53%. At the end of the six week trial the lesion was gone and so far no recurrance.

These were six 28 day cycles.

I haven't tried ipi but I did a trial combining carbo taxol and temodar over the winter. After one infusion the right adrenal lesion had shrunk by 53%. At the end of the six week trial the lesion was gone and so far no recurrance.

These were six 28 day cycles.

A breast cancer survivor friend of mine had no trouble with lymphedema for five years until her first plane flight after surgery. So it can come on suddenly and a change in altitude can definitely cause problems.

Just for your own peace of mind, why don't you call both of them? Best wishes to you and please post again as to how you are doing.

A breast cancer survivor friend of mine had no trouble with lymphedema for five years until her first plane flight after surgery. So it can come on suddenly and a change in altitude can definitely cause problems.

Just for your own peace of mind, why don't you call both of them? Best wishes to you and please post again as to how you are doing.

That is so wonderful! I did six infusions of carbo/taxol plus temodar and after the first infusion the lesion on my adrenal gland had shrunk more than 50% and after each additional infusion it shrank more until it was gone after the sixth. I hope so much that it goes the same way with Don for as long as he is on it!

That is so wonderful! I did six infusions of carbo/taxol plus temodar and after the first infusion the lesion on my adrenal gland had shrunk more than 50% and after each additional infusion it shrank more until it was gone after the sixth. I hope so much that it goes the same way with Don for as long as he is on it!

Thank you…I love that! I have a huge craniotomy scar and a scar on my upper left arm that looks like one of my horses took a great big bite out of me. In fact, I confess that I've told a few people that is what happened. 😉

The first couple of years I hid my scars but now I wear them proudly and tell people that melanoma is NOT 'just skin cancer'. My husband has done a lot in helping me to feel I am beautiful, scars and all.

If I could give you back the innocence of being 24 again, I would in a heartbeat Yet at the same time, here I am at 58 and I wish so much that I could have learned what this disease has taught me when I was younger.

You strike me as someone who will take this experience and turn it into something that is full of beauty, love and truth. Bless you!

Thank you…I love that! I have a huge craniotomy scar and a scar on my upper left arm that looks like one of my horses took a great big bite out of me. In fact, I confess that I've told a few people that is what happened. 😉

The first couple of years I hid my scars but now I wear them proudly and tell people that melanoma is NOT 'just skin cancer'. My husband has done a lot in helping me to feel I am beautiful, scars and all.

If I could give you back the innocence of being 24 again, I would in a heartbeat Yet at the same time, here I am at 58 and I wish so much that I could have learned what this disease has taught me when I was younger.

You strike me as someone who will take this experience and turn it into something that is full of beauty, love and truth. Bless you!

I was on a six month course of temodar in combo with carboplatin and taxol so it's hard to know what side effects came from what. I took temodar orally for five days starting the second day after infusion. To reduce the impact on me, I took it in the evening before bed and about a half hour after I took the anti-nausea and steroid meds. That way I slept through the worst of the effects.

The main thing I can tell you for sure is that it affected my desire to eat. I kept  a lot of small nourishing snack type things around that I could talk myself into eating through the day. Comfort foods were great then – like mac and cheese, pudding, ice cream and so on. It really affected my taste and I was oddly drawn to spicy foods. My husband made me a pot of TexMex chilli and corn bread during one course and that was a great treat!

During the whole treatment I craved salty and fat heavy foods and my nutritionist said that was most likely due to my body's efforts to rebuild bone marrow and blood.  I figured eating 'healthy' wasn't nearly as important as getting some kind of nourishment in me and she agreed with that totally and told me to eat whatever my body wanted.

Two days after the last pill I would wake up with a craving for a cheeseburger and fries and I would know I was on the way back! I don't know if it actually affected my appetite or that it made things taste weird. Just in case, be prepared with your wife's favorite treats and comfort foods so that you can keep her eating.

My motto throughout was 'Eat as much as you can whenever you can!' It worked really well and I actually gained a pound or two between each treatment right up to the last two when I lost weight but not enough to cause any problems.

Like I said, I can't sort out what caused what for the most part but my most common side effects during and after the temodar was fatigue, a feeling of weakness in my joints (knees and hips mostly) and neuropathy, especially in my feet at night. I found that taking a xanax when I went to bed greatly reduced the pain and discomfort of the neuropathy in my feet.

Please continue to let us know how she is doing.

I was on a six month course of temodar in combo with carboplatin and taxol so it's hard to know what side effects came from what. I took temodar orally for five days starting the second day after infusion. To reduce the impact on me, I took it in the evening before bed and about a half hour after I took the anti-nausea and steroid meds. That way I slept through the worst of the effects.

The main thing I can tell you for sure is that it affected my desire to eat. I kept  a lot of small nourishing snack type things around that I could talk myself into eating through the day. Comfort foods were great then – like mac and cheese, pudding, ice cream and so on. It really affected my taste and I was oddly drawn to spicy foods. My husband made me a pot of TexMex chilli and corn bread during one course and that was a great treat!

During the whole treatment I craved salty and fat heavy foods and my nutritionist said that was most likely due to my body's efforts to rebuild bone marrow and blood.  I figured eating 'healthy' wasn't nearly as important as getting some kind of nourishment in me and she agreed with that totally and told me to eat whatever my body wanted.

Two days after the last pill I would wake up with a craving for a cheeseburger and fries and I would know I was on the way back! I don't know if it actually affected my appetite or that it made things taste weird. Just in case, be prepared with your wife's favorite treats and comfort foods so that you can keep her eating.

My motto throughout was 'Eat as much as you can whenever you can!' It worked really well and I actually gained a pound or two between each treatment right up to the last two when I lost weight but not enough to cause any problems.

Like I said, I can't sort out what caused what for the most part but my most common side effects during and after the temodar was fatigue, a feeling of weakness in my joints (knees and hips mostly) and neuropathy, especially in my feet at night. I found that taking a xanax when I went to bed greatly reduced the pain and discomfort of the neuropathy in my feet.

Please continue to let us know how she is doing.

Hi TracyLee – I think one of the hardest things is to give yourself permission to be in a funk! I know I am always trying to be positive and optomistic for my husband and friends' sake and it gets exhausting. I even found myself thanking my husband for taking a day off recently because it meant I didn't feel guilty for not doing anything that day too!

Your body is going through a lot and I think those mood swings have a lot to do with that. Plus our brains go into survival mode and in my case, I just want to focus on that so I can imagine having a 14 year old daughter added to the mix would be really rough. When I look back and remember how awful I was at that age, I don't envy anyone dealing with that while fighting cancer too.

I've been having truly terrible post chemo neuropathic pain and I found myself thinking last night how glad I am that my husband is back working in ND because it means I don't have to try to hide how bad it hurts.

So hang in there and give yourself permission to have a bad day or two, or twenty!

Hi TracyLee – I think one of the hardest things is to give yourself permission to be in a funk! I know I am always trying to be positive and optomistic for my husband and friends' sake and it gets exhausting. I even found myself thanking my husband for taking a day off recently because it meant I didn't feel guilty for not doing anything that day too!

Your body is going through a lot and I think those mood swings have a lot to do with that. Plus our brains go into survival mode and in my case, I just want to focus on that so I can imagine having a 14 year old daughter added to the mix would be really rough. When I look back and remember how awful I was at that age, I don't envy anyone dealing with that while fighting cancer too.

I've been having truly terrible post chemo neuropathic pain and I found myself thinking last night how glad I am that my husband is back working in ND because it means I don't have to try to hide how bad it hurts.

So hang in there and give yourself permission to have a bad day or two, or twenty!

I've been gone close to a month and was shocked that my first post to read coming back included this annomyous reply. Melanoma is ugly. That is the reality of it and I have so often admired the clear love Eric & Jill hold for each other that is so strong that mel can't even cast a shadow on it!

My current reality is that after six months of a drug trial and being a complete responder, 2 lumbar and 1 thoracic lesion left me mostly paralyzed from the waist down and in intense upper body nerve pain in 72 hours.

Melanoma is ugly and I have to wonder if my 'clean but paralyzed' version would be more acceptable to anon? I know it's scary – we've all been terrified at some point or other by diagnosis and most of us have found a way to move on and be joyful – something I always feel from Jill & Eric – JOY!

So what's up for me now? I'm a resident at UNM Cancer Center and just had my 7th round of External Beam Radiation. Mostly I'm in awe of technology that allows them to map a beam to target only 3 lesions that undoubtedly came from last year's brain met, while doing minimal damage to spine and nerve tissue.

After more than a year I still have nonew  brain recurrance and 4 months out from completing chemo, no distant recurrance other than spinal fluid. In my book that's not a bad deal!

Today I am rejoicing at having enough strength in my left hand to activate my keyboard keys.

So Eric & Jill, please keep the love coming…I for one can take it and need it!

I've been gone close to a month and was shocked that my first post to read coming back included this annomyous reply. Melanoma is ugly. That is the reality of it and I have so often admired the clear love Eric & Jill hold for each other that is so strong that mel can't even cast a shadow on it!

My current reality is that after six months of a drug trial and being a complete responder, 2 lumbar and 1 thoracic lesion left me mostly paralyzed from the waist down and in intense upper body nerve pain in 72 hours.

Melanoma is ugly and I have to wonder if my 'clean but paralyzed' version would be more acceptable to anon? I know it's scary – we've all been terrified at some point or other by diagnosis and most of us have found a way to move on and be joyful – something I always feel from Jill & Eric – JOY!

So what's up for me now? I'm a resident at UNM Cancer Center and just had my 7th round of External Beam Radiation. Mostly I'm in awe of technology that allows them to map a beam to target only 3 lesions that undoubtedly came from last year's brain met, while doing minimal damage to spine and nerve tissue.

After more than a year I still have nonew  brain recurrance and 4 months out from completing chemo, no distant recurrance other than spinal fluid. In my book that's not a bad deal!

Today I am rejoicing at having enough strength in my left hand to activate my keyboard keys.

So Eric & Jill, please keep the love coming…I for one can take it and need it!