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- July 30, 2011 at 6:08 pm
Thanks to all for the information. To answer a couple questions, yes we have contacted two of her doctors to let them know about the confusion. Hospice originally thought it was liver failure and we ordered the blood work and they said her numbers were only "slightly off". We are waiting for the CT scan results to come back. She was scanned on Wednesday and no results were delivered to the oncol. by yesterday afternoon. My fear is also of brain mets because of the swollen lymph nodes in the neck. Also, she has been having lots of sinus drainage into her nose and throat for the last 3 weeks.
Other family members are convinced the Yervoy is causing her symptoms. I have read the symptoms and it does say that in some cases patients have reported confusion and memory loss. We've been reporting her symptoms frequently to her doctor, just waiting for results which is torture!
Stephanie
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- July 30, 2011 at 6:08 pm
Thanks to all for the information. To answer a couple questions, yes we have contacted two of her doctors to let them know about the confusion. Hospice originally thought it was liver failure and we ordered the blood work and they said her numbers were only "slightly off". We are waiting for the CT scan results to come back. She was scanned on Wednesday and no results were delivered to the oncol. by yesterday afternoon. My fear is also of brain mets because of the swollen lymph nodes in the neck. Also, she has been having lots of sinus drainage into her nose and throat for the last 3 weeks.
Other family members are convinced the Yervoy is causing her symptoms. I have read the symptoms and it does say that in some cases patients have reported confusion and memory loss. We've been reporting her symptoms frequently to her doctor, just waiting for results which is torture!
Stephanie
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- March 2, 2011 at 2:20 am
Jan,
So sorry to hear about your husbands brain mets. I know how hard it is to sit and wait around for the drs. to call and schedule for things to be done. I know once we were told by a nurse that the dr. would be calling soon at about 3:00 p.m. and he didn't call back until the next day when my mom was already in the hospital. Thank God we took her on, because she had a blood clot, now she takes shots twice daily for blood thinner. Yes, melanoma sucks. The whole thing sucks and sometimes it's good to just be able to say that to someone who understands. My parents are divorced so my mom is living with my grandparents and my aunt. They are a tremendous support to her, but my grandmother is now wearing quite thin. My sister and I are having to step up the support, which we are so happy to do, but both have young children so it's difficult.
Anyway, I hope your husband gets his radiation soon and that the ipi is working. We are probably going to be on ipi within the next few weeks because mom can't get on much of anything becuase of her eyes and asthma. I looked into adoptive cell and they said no b/c of asthma meds.
How is your husband handling the side effects of ipi? I hope they aren't too greivous. We are heading back up to TN to see the dr. on Tues. I know it is one day at a time with melanoma, so I hope today was a good day for you both.
Stephanie in Mobile, AL (daughter to Jennifer; stage IV mets in liver, spleen, kidneys, lungs, bones, muscles; failed braf and e7080)
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- March 2, 2011 at 2:20 am
Jan,
So sorry to hear about your husbands brain mets. I know how hard it is to sit and wait around for the drs. to call and schedule for things to be done. I know once we were told by a nurse that the dr. would be calling soon at about 3:00 p.m. and he didn't call back until the next day when my mom was already in the hospital. Thank God we took her on, because she had a blood clot, now she takes shots twice daily for blood thinner. Yes, melanoma sucks. The whole thing sucks and sometimes it's good to just be able to say that to someone who understands. My parents are divorced so my mom is living with my grandparents and my aunt. They are a tremendous support to her, but my grandmother is now wearing quite thin. My sister and I are having to step up the support, which we are so happy to do, but both have young children so it's difficult.
Anyway, I hope your husband gets his radiation soon and that the ipi is working. We are probably going to be on ipi within the next few weeks because mom can't get on much of anything becuase of her eyes and asthma. I looked into adoptive cell and they said no b/c of asthma meds.
How is your husband handling the side effects of ipi? I hope they aren't too greivous. We are heading back up to TN to see the dr. on Tues. I know it is one day at a time with melanoma, so I hope today was a good day for you both.
Stephanie in Mobile, AL (daughter to Jennifer; stage IV mets in liver, spleen, kidneys, lungs, bones, muscles; failed braf and e7080)
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- February 27, 2011 at 1:48 am
Hi Jan,
My mother is also stage IV with many of the mets that your husband has. She failed the BRAF with MEK (only patient out of 30 with continued growth) and has been taken off of the E7080 after 6 weeks on because of ocular swelling. We were really upset to hear that her eye condition would disqualify her from this and many other trials. The dr. says she will be blind if she continues these meds. Now we are in the God-awful Limbo waiting for 28 days and trying to decide what to do next. She is also considering ipi. but I am remembering some fo the early research I did on adoptive cell. She has severe asthma and is also on oral steroids so I don't know if this would also disqualify her from adopt. cell. The dr. seemed, for the first time, not to know what to do for her and she is pretty discouraged. We're trying to stay positive since there are no brain mets, and we're thankful for that. Has anyone else done recent research on adoptive cell?
Thanks! I'm new to this forum and have already benefitted from reading previous posts.
Stephanie in Alabama (daughter to Jennifer 44yrs old: stage IV mets in liver, kidneys, lungs, spleen, breasts, bones and muscles).
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- February 27, 2011 at 1:48 am
Hi Jan,
My mother is also stage IV with many of the mets that your husband has. She failed the BRAF with MEK (only patient out of 30 with continued growth) and has been taken off of the E7080 after 6 weeks on because of ocular swelling. We were really upset to hear that her eye condition would disqualify her from this and many other trials. The dr. says she will be blind if she continues these meds. Now we are in the God-awful Limbo waiting for 28 days and trying to decide what to do next. She is also considering ipi. but I am remembering some fo the early research I did on adoptive cell. She has severe asthma and is also on oral steroids so I don't know if this would also disqualify her from adopt. cell. The dr. seemed, for the first time, not to know what to do for her and she is pretty discouraged. We're trying to stay positive since there are no brain mets, and we're thankful for that. Has anyone else done recent research on adoptive cell?
Thanks! I'm new to this forum and have already benefitted from reading previous posts.
Stephanie in Alabama (daughter to Jennifer 44yrs old: stage IV mets in liver, kidneys, lungs, spleen, breasts, bones and muscles).
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