I am trying to locate some folks for my mom to talk to. She has been really discouraged with 4 mos of chemo with no positive results. She is in her early 70s. She doesn't know I am asking about this. Just wondering if knowing there was someone she could call when she feels all alone and scared...who really understands...might help her.
HI,
May I ask where your mother is being treated? If after 4 months there has been no improvement, her doctors may need to look at switching her to a different chemo regimen. There are several different treatment options that are available now, but if she does not have a doctor that is familiar with them, she could continue to see no results. Does your mother have internet access or are you looking for someone that could speak with her on the phone? I would be happy to talk with both of you sometime. I facilitate support group meetings in several locations along the east coast and if you tell me where she is, I can possibly connect her to another patient that is close to her. Just let me know what you would like to do.
Paula Schmitt
She is being treated at a hospital in Concord CA. Her Dr is a hematologist, but mostly has cancer patients I think. Next week she has a second opinion w/ a Dr. at UCSF Med Ctr. I got the idea that he sees more Amy patients.
She does have internet, but doesn't like looking at stuff online about it because she sees all the negative stuff too,and it gets her down. She lives in the Concord area.
ga_peach said:
HI,
May I ask where your mother is being treated? If after 4 months there has been no improvement, her doctors may need to look at switching her to a different chemo regimen. There are several different treatment options that are available now, but if she does not have a doctor that is familiar with them, she could continue to see no results. Does your mother have internet access or are you looking for someone that could speak with her on the phone? I would be happy to talk with both of you sometime. I facilitate support group meetings in several locations along the east coast and if you tell me where she is, I can possibly connect her to another patient that is close to her. Just let me know what you would like to do.
Paula Schmitt
The doctors to see at UCSF are Dr.Lloyd Damon http://www.ucsfhealth.org/cgi-bin/expertDetail.cgi?doctorid=1478 and
Dr. Jeff Wolf http://www.ucsfhealth.org/jeffrey.wolf
I know some patients that have been treated at UCSF but I think the majority in northern california are going to the program at Stanford. The contact info for them is:
Stanford coordinator
Terra R. Coakley ■■■■■■■■■■■■■■■■■■■■■■■■■■■
Patient Coordinator Amyloid Center
Cardiovascular Medicine
Stanford University
p: (650) ■■■■■■■■
f: (650) ■■■■■■■■
Thanks for the info. My mom is seeing Dr. Thomas Martin. I think her current Dr knows him. I am a little afraid to give her the info before the appointment we have because I don't want her to think she doing something wrong by seeing this guy. I think I will let her know after. She gets anxious easily. Thoughts?
Good morning.
I have amyloid in my kidneys & heart. I was on heavy chemo ( once a week for a year) then every other week for five months. Right now my numbers are steady so I’m off chemo. I have a great team @ Stanford .i also need to add that I had terrible itching of my skin this whole time & saw 5 derms until finally dr Kwong @ stanfordtold me I had Prurigo nodgules . I’m much better now with treatment.i also went to the Mayo clinic . They were good however Stanford is much closer . I found anxiety is part of this journey. Good luck
Extrasallee said:
Thanks for the info. My mom is seeing Dr. Thomas Martin. I think her current Dr knows him. I am a little afraid to give her the info before the appointment we have because I don’t want her to think she doing something wrong by seeing this guy. I think I will let her know after. She gets anxious easily. Thoughts?
Thanks for info and for replying, I will relay to my mom the info.
Kay heaton said:
Good morning.
I have amyloid in my kidneys & heart. I was on heavy chemo ( once a week for a year) then every other week for five months. Right now my numbers are steady so I'm off chemo. I have a great team @ Stanford .i also need to add that I had terrible itching of my skin this whole time & saw 5 derms until finally dr Kwong @ stanfordtold me I had Prurigo nodgules . I'm much better now with treatment.i also went to the Mayo clinic . They were good however Stanford is much closer . I found anxiety is part of this journey. Good luck
Extrasallee said:Thanks for the info. My mom is seeing Dr. Thomas Martin. I think her current Dr knows him. I am a little afraid to give her the info before the appointment we have because I don't want her to think she doing something wrong by seeing this guy. I think I will let her know after. She gets anxious easily. Thoughts?
Good evening: thank you for responding. When does your mom see the doctor? Has she been diag
Extrasallee said:
Thanks for info and for replying, I will relay to my mom the info.
Kay heaton said:Good morning.
I have amyloid in my kidneys & heart. I was on heavy chemo ( once a week for a year) then every other week for five months. Right now my numbers are steady so I’m off chemo. I have a great team @ Stanford .i also need to add that I had terrible itching of my skin this whole time & saw 5 derms until finally dr Kwong @ stanfordtold me I had Prurigo nodgules . I’m much better now with treatment.i also went to the Mayo clinic . They were good however Stanford is much closer . I found anxiety is part of this journey. Good luck
Extrasallee said:Thanks for the info. My mom is seeing Dr. Thomas Martin. I think her current Dr knows him. I am a little afraid to give her the info before the appointment we have because I don’t want her to think she doing something wrong by seeing this guy. I think I will let her know after. She gets anxious easily. Thoughts?
Has your mom been told where her Amy is? If you need any information I would be glad to help. Good luck. Kay
Extrasallee said:
Thanks for info and for replying, I will relay to my mom the info.
Kay heaton said:Good morning.
I have amyloid in my kidneys & heart. I was on heavy chemo ( once a week for a year) then every other week for five months. Right now my numbers are steady so I’m off chemo. I have a great team @ Stanford .i also need to add that I had terrible itching of my skin this whole time & saw 5 derms until finally dr Kwong @ stanfordtold me I had Prurigo nodgules . I’m much better now with treatment.i also went to the Mayo clinic . They were good however Stanford is much closer . I found anxiety is part of this journey. Good luck
Extrasallee said:Thanks for the info. My mom is seeing Dr. Thomas Martin. I think her current Dr knows him. I am a little afraid to give her the info before the appointment we have because I don’t want her to think she doing something wrong by seeing this guy. I think I will let her know after. She gets anxious easily. Thoughts?
Thanks. Her disease is affecting her kidneys. She is in her 5th cycle now of chemo. Her Light Chains are normal now, but her kidneys still not having normal readings. She has an apt w/ her hematologist and her nephrologist today for more info.
Kay heaton said:
Good evening: thank you for responding. When does your mom see the doctor? Has she been diag
Extrasallee said:Thanks for info and for replying, I will relay to my mom the info.
Kay heaton said:Good morning.
I have amyloid in my kidneys & heart. I was on heavy chemo ( once a week for a year) then every other week for five months. Right now my numbers are steady so I'm off chemo. I have a great team @ Stanford .i also need to add that I had terrible itching of my skin this whole time & saw 5 derms until finally dr Kwong @ stanfordtold me I had Prurigo nodgules . I'm much better now with treatment.i also went to the Mayo clinic . They were good however Stanford is much closer . I found anxiety is part of this journey. Good luck
Extrasallee said:Thanks for the info. My mom is seeing Dr. Thomas Martin. I think her current Dr knows him. I am a little afraid to give her the info before the appointment we have because I don't want her to think she doing something wrong by seeing this guy. I think I will let her know after. She gets anxious easily. Thoughts?
Extrasallee,
The fact that your mothers free light chains are now normal is a very good sign! Please don't worry too much right now about how much protein she is spilling. It will most likely take over a year before her kidneys will show any improvement. Patience is what you and your mother need now. Because she has some kidney damage, she may always have elevated protein levels in her urine. If she achieves a complete response to the chemo you can expect for her numbers to improve over time. Her kidneys will begin to improve once the production of amyloid has been shut down completely. So as hard as it is, have patience. I am attaching a copy of the bio-marker spreadsheet that was developed by the Amyloidosis Support Groups with the input and oversight of our medical board of advisors. The numbers on the sheet are the ones that the doctors should use to follow her progress. We have been told that some fluctuation in these numbers is normal so don't freak out if they go up every now and then. The overall trends are what the doctors look at. Also be sure to note the unit of measure on your mother's blood work results. Some labs us mg/L while others use mg/dL. The difference in these measurements is 10 fold so be sure to look closely.
An example of the difference in Reference Ranges:
Lambda Free Light Chains 0.57 - 2.63 mg/dL * versus
Lambda Free Light Chains 57 - 263 mg/L
While these numbers are different, they actually are the same because of the mg/DL vs. mg/L
I hope this helps!
Paula Schmitt
5-BiomarkerTrackingSpreadsheetrev2.25.14.pdf (186 KB)This is great! THanks so much.
ga_peach said:
Extrasallee,
The fact that your mothers free light chains are now normal is a very good sign! Please don't worry too much right now about how much protein she is spilling. It will most likely take over a year before her kidneys will show any improvement. Patience is what you and your mother need now. Because she has some kidney damage, she may always have elevated protein levels in her urine. If she achieves a complete response to the chemo you can expect for her numbers to improve over time. Her kidneys will begin to improve once the production of amyloid has been shut down completely. So as hard as it is, have patience. I am attaching a copy of the bio-marker spreadsheet that was developed by the Amyloidosis Support Groups with the input and oversight of our medical board of advisors. The numbers on the sheet are the ones that the doctors should use to follow her progress. We have been told that some fluctuation in these numbers is normal so don't freak out if they go up every now and then. The overall trends are what the doctors look at. Also be sure to note the unit of measure on your mother's blood work results. Some labs us mg/L while others use mg/dL. The difference in these measurements is 10 fold so be sure to look closely.
An example of the difference in Reference Ranges:
Lambda Free Light Chains 0.57 - 2.63 mg/dL * versus
Lambda Free Light Chains 57 - 263 mg/L
While these numbers are different, they actually are the same because of the mg/DL vs. mg/L
I hope this helps!
Paula Schmitt
I am in the SF north bay, but I don't think I'm counselor capable. I just want to say that it has been 9 years since my diagnosis, and though I can't over exert myself, I lead a pretty normal life now. What I want your mom to know is that I took oral chemo drugs for 6 years before my blood labs normalized. So it is not a quick fix. There were some unpleasant times with the chemo side effects, but I got through them. I just kept doing what I had to do. FYI I am a 62 year old female.
Thanks for your feedback SheSurvives. My mom's most serious symptoms is leg/foot edema. She just had a bone marrow biopsy to see if she is in remission yet. Results won't be in for a bit. Hope you continue to be well. Did you have any relapses in those 9 years?