Bennickliz

Diagnosed 3 years ago stage 4, unknown primary.

2 rounds of ippi. Very mild side effects. Continued working.

Met to femur, radiated. Went on disability. Worked in large teaching hospital as respiratory therapist. Job was physically demanding and stressful. I miss my job, but I can concentrate on my health and family. My blood pressure has never been lower.

2 rounds of IL2.  This treatments by far was the worst. 

Radiation to adrenal gland.

Started ippi/nivo combo August 2015.

Port installed. Best thing ever. Highly recommend it.

I've been on nivo every 2 weeks.

I'm a partial responder at this point. 

No real side effects, but mild fatigue.

I always try to stay one step ahead of things. If this treatment doesn't work, then what will be next. I like being proactive. My onc has suggested at times to do the wait and see approach, but that makes me anxious. I want to make sure I try everything I can to beat this. You never know what might work. I haven't had the side effects that you've described Charles as having, so I know you are in a more difficult place. I'm just happy I've made it 3 years and if I can keep this disease as chronic and continue to see my children grow as adults, I'll be satisfied. 

Prayers to both of you!

Becky

Diagnosed 3 years ago stage 4, unknown primary.

2 rounds of ippi. Very mild side effects. Continued working.

Met to femur, radiated. Went on disability. Worked in large teaching hospital as respiratory therapist. Job was physically demanding and stressful. I miss my job, but I can concentrate on my health and family. My blood pressure has never been lower.

2 rounds of IL2.  This treatments by far was the worst. 

Radiation to adrenal gland.

Started ippi/nivo combo August 2015.

Port installed. Best thing ever. Highly recommend it.

I've been on nivo every 2 weeks.

I'm a partial responder at this point. 

No real side effects, but mild fatigue.

I always try to stay one step ahead of things. If this treatment doesn't work, then what will be next. I like being proactive. My onc has suggested at times to do the wait and see approach, but that makes me anxious. I want to make sure I try everything I can to beat this. You never know what might work. I haven't had the side effects that you've described Charles as having, so I know you are in a more difficult place. I'm just happy I've made it 3 years and if I can keep this disease as chronic and continue to see my children grow as adults, I'll be satisfied. 

Prayers to both of you!

Becky

Diagnosed 3 years ago stage 4, unknown primary.

2 rounds of ippi. Very mild side effects. Continued working.

Met to femur, radiated. Went on disability. Worked in large teaching hospital as respiratory therapist. Job was physically demanding and stressful. I miss my job, but I can concentrate on my health and family. My blood pressure has never been lower.

2 rounds of IL2.  This treatments by far was the worst. 

Radiation to adrenal gland.

Started ippi/nivo combo August 2015.

Port installed. Best thing ever. Highly recommend it.

I've been on nivo every 2 weeks.

I'm a partial responder at this point. 

No real side effects, but mild fatigue.

I always try to stay one step ahead of things. If this treatment doesn't work, then what will be next. I like being proactive. My onc has suggested at times to do the wait and see approach, but that makes me anxious. I want to make sure I try everything I can to beat this. You never know what might work. I haven't had the side effects that you've described Charles as having, so I know you are in a more difficult place. I'm just happy I've made it 3 years and if I can keep this disease as chronic and continue to see my children grow as adults, I'll be satisfied. 

Prayers to both of you!

Becky

I started the ipi/nivo combo in August. Prior treatments were 2 rounds of ipi, IL2, radiation to adrenal and femur).  If anything the 2 rounds of ipi maybe slowed the growth down. I found a new met last July and the started the combo. I was scanned in November and all my mets shrank. Minimal side effects. Had another scan 2 weeks ago and continued shrinkage and the new met was gone. I'm getting the nivo every 2 weeks. My doctor and I discussed even getting a fourth round of ipi if I start to progress. It has been 3 years since diagnosis (stage 4 right off the bat), and I've learned that you just never know what will work.  Everyone is different and you just have to keep fighting and try to keep one step ahead. Take care! Becky

I started the ipi/nivo combo in August. Prior treatments were 2 rounds of ipi, IL2, radiation to adrenal and femur).  If anything the 2 rounds of ipi maybe slowed the growth down. I found a new met last July and the started the combo. I was scanned in November and all my mets shrank. Minimal side effects. Had another scan 2 weeks ago and continued shrinkage and the new met was gone. I'm getting the nivo every 2 weeks. My doctor and I discussed even getting a fourth round of ipi if I start to progress. It has been 3 years since diagnosis (stage 4 right off the bat), and I've learned that you just never know what will work.  Everyone is different and you just have to keep fighting and try to keep one step ahead. Take care! Becky

I started the ipi/nivo combo in August. Prior treatments were 2 rounds of ipi, IL2, radiation to adrenal and femur).  If anything the 2 rounds of ipi maybe slowed the growth down. I found a new met last July and the started the combo. I was scanned in November and all my mets shrank. Minimal side effects. Had another scan 2 weeks ago and continued shrinkage and the new met was gone. I'm getting the nivo every 2 weeks. My doctor and I discussed even getting a fourth round of ipi if I start to progress. It has been 3 years since diagnosis (stage 4 right off the bat), and I've learned that you just never know what will work.  Everyone is different and you just have to keep fighting and try to keep one step ahead. Take care! Becky

I had bone met in femur that started off as a bit of pain and progressed to extreme pain when walking(within a month). Did not hurt at rest. X-ray didn't show anything, had bone scan which showed spot and then MRI confirmed met. I thought it was muscular at first too. I would say if X-ray is clear and pain doesn't resolve to ask for bone scan. 

I had radiation and it took a few months to get better.  Good Luck!

I had bone met in femur that started off as a bit of pain and progressed to extreme pain when walking(within a month). Did not hurt at rest. X-ray didn't show anything, had bone scan which showed spot and then MRI confirmed met. I thought it was muscular at first too. I would say if X-ray is clear and pain doesn't resolve to ask for bone scan. 

I had radiation and it took a few months to get better.  Good Luck!

I had bone met in femur that started off as a bit of pain and progressed to extreme pain when walking(within a month). Did not hurt at rest. X-ray didn't show anything, had bone scan which showed spot and then MRI confirmed met. I thought it was muscular at first too. I would say if X-ray is clear and pain doesn't resolve to ask for bone scan. 

I had radiation and it took a few months to get better.  Good Luck!