Thank you for the replies.
Here are my full results. My kappa / lambda ratio has been high too since my stem cell transplant.
Serum Free Light Chain Test Results
Kappa free light chain: 111.5 mg/L (3.3-19.4) High
Lambda free light chain: 1.9 mg/L (5.7-26.3) Low
Kappa / lambda FLC ratio: 58.68 (0.26-1.65) High
Forums
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC,
I am still betting that these free light chain numbers come down to normal or nearly normal levels at Day 100. Your body has been through a lot. And, most notably, you have no monoclonal protein in your electrophoresis, which I think is even more important. When I was going through induction, my free light chain levels had pretty much normalized by the 4th or 5th cycle. However, I continued to have monoclonal protein showing up in my electrophoresis prior to transplant, even though those light chains were pretty much normal. Are you having a bone marrow biopsy at Day 100? Did you have one before the transplant? What did that show?
How are your kidneys? If your creatinine is even a little high, that can affect your serum free light chain results. Keep in mind that your bone marrow has been damaged by the transplant, even though your blood counts look good. You also had a rash, and inflammation of any type can mess with the free light chain results. Have you had any infections or a cold? That can affect the free light chain results as well.
Hang in there AC, I think this is going to turn out all right!
Ellen Harris
I am still betting that these free light chain numbers come down to normal or nearly normal levels at Day 100. Your body has been through a lot. And, most notably, you have no monoclonal protein in your electrophoresis, which I think is even more important. When I was going through induction, my free light chain levels had pretty much normalized by the 4th or 5th cycle. However, I continued to have monoclonal protein showing up in my electrophoresis prior to transplant, even though those light chains were pretty much normal. Are you having a bone marrow biopsy at Day 100? Did you have one before the transplant? What did that show?
How are your kidneys? If your creatinine is even a little high, that can affect your serum free light chain results. Keep in mind that your bone marrow has been damaged by the transplant, even though your blood counts look good. You also had a rash, and inflammation of any type can mess with the free light chain results. Have you had any infections or a cold? That can affect the free light chain results as well.
Hang in there AC, I think this is going to turn out all right!
Ellen Harris
Re: AC's stem cell transplant in South Florida
Hi Ellen,
I had a bone marrow biopsy before the transplant and it showed a decrease in my plasma cell percentage to 20% from 70%. I do not know if they plan to do another after 100 days. I sure do not want one, but I know it will show how I am progressing.
My creatinine is 0.83 mg/dL and so far I have heard my kidneys are in good shape. When I finished my transplant, my ALT had increased to over 150, but it is now down to normal at 35.
I will keep positive as I move forward to Day 100 and I appreciate so much everyone's comments and information.
AC
I had a bone marrow biopsy before the transplant and it showed a decrease in my plasma cell percentage to 20% from 70%. I do not know if they plan to do another after 100 days. I sure do not want one, but I know it will show how I am progressing.
My creatinine is 0.83 mg/dL and so far I have heard my kidneys are in good shape. When I finished my transplant, my ALT had increased to over 150, but it is now down to normal at 35.
I will keep positive as I move forward to Day 100 and I appreciate so much everyone's comments and information.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Well today is Day +46 and I cannot believe I am almost half way to the magic 100-day mark. I still have my rash and my kappa free light chain numbers are still increased, BUT I am getting stronger and stronger everyday. I was able to spend time at the beach this weekend and actually was able to enjoy a little of summer.
As July approaches, I wish anybody that is about to start their stem cell journey in the month of July all the best. I have incorporated the line from the new "Finding Dory" movie I saw on Father's Day of "Just Keep Swimming." I think that this is perfect for everyone on our myeloma journey because it truly is one day at a time and "just keep swimming."
AC
As July approaches, I wish anybody that is about to start their stem cell journey in the month of July all the best. I have incorporated the line from the new "Finding Dory" movie I saw on Father's Day of "Just Keep Swimming." I think that this is perfect for everyone on our myeloma journey because it truly is one day at a time and "just keep swimming."
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC,
Love it. We will just keep swimming as well!
Love it. We will just keep swimming as well!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
AC,
You sound great! I think the fresh air is the best, but be careful and wear sunscreen, especially with that rash! How's your appetite? Are you eating everything yet?
Some people get a very mild type of GVHD (graft versus host disease) rash, even with the transplant being autologous. I was itchy for a few months after my transplant, but I had no rash. Mostly my back ... drove me nuts! With respect to allogeneic transplants, a little GVHD is actually considered a good thing, maybe it is a good omen for your transplant, as well!
Keep on enjoying yourself ...
Ellen Harris
You sound great! I think the fresh air is the best, but be careful and wear sunscreen, especially with that rash! How's your appetite? Are you eating everything yet?
Some people get a very mild type of GVHD (graft versus host disease) rash, even with the transplant being autologous. I was itchy for a few months after my transplant, but I had no rash. Mostly my back ... drove me nuts! With respect to allogeneic transplants, a little GVHD is actually considered a good thing, maybe it is a good omen for your transplant, as well!
Keep on enjoying yourself ...
Ellen Harris
Re: AC's stem cell transplant in South Florida
Great to hear you're feeling better and your spirits have improved. I'm wrapping up week two of all the pokes, prods, and scans of transplant evaluations. It is exhausting but I know necessary. Your strength and example helps keep me going.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: AC's stem cell transplant in South Florida
Mark, My prayers are with you as you are proceeding with your transplant.
Ellen, I am eating a low bacteria diet. I was wondering when I can start eating out at proper places. Do you know at what time that is allowed? I meant to ask my stem cell doctor before he went on vacation and he is now out until July 12th. I would like to slowly start my way back to eating normal with lots of fruits and veggies. I miss my blueberries and they are in season now in Florida.
My rash is still hanging on. It's little red bumps around my body, and sensitive. Old red bumps go away and new ones come up. Can't figure it out and the dermatologist in the stem cell transplant unit can't either. I have stopped all meds and am using only non-fragrance personal care items. I am starting to think I am allergic to something environmental or maybe it is like Ellen suggested: engraftment syndrome.
AC
Ellen, I am eating a low bacteria diet. I was wondering when I can start eating out at proper places. Do you know at what time that is allowed? I meant to ask my stem cell doctor before he went on vacation and he is now out until July 12th. I would like to slowly start my way back to eating normal with lots of fruits and veggies. I miss my blueberries and they are in season now in Florida.
My rash is still hanging on. It's little red bumps around my body, and sensitive. Old red bumps go away and new ones come up. Can't figure it out and the dermatologist in the stem cell transplant unit can't either. I have stopped all meds and am using only non-fragrance personal care items. I am starting to think I am allergic to something environmental or maybe it is like Ellen suggested: engraftment syndrome.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC,
I am not sure what to tell you in terms of your diet. There is variation on that score, as well, among "experts." My appetite and digestion was so poor for quite awhile after the transplant, that I really couldn't even think of having fresh fruit! So, that is a good quandry to be in. When you left the hospital, they must have given you instructions regarding what to do at home in terms of lifestyle, etc. Maybe take a look at that, if you have it.
I would say to err on the side of caution at this point, especially since you have a rash. Summer fruit can be allergy-inducing, and fresh fruit and veggies have bacteria on them. I know it's a drag, but I would wait to speak to my doctor first. Maybe you can still reach someone today at the hospital? Don't be shy, I always called when I had questions, even if it was at an "inconvenient time." It's the middle of the day, someone may get.back to you later.
Have a great weekend, and make sure if you go to a barbecue that the meat is well cooked! You don't want to pick up anything from undercooked meat. Also, I would be careful not to eat anything from a communal source, or anything with mayo that has been outside too long in the heat. Sorry to be such a bummer, but hot dogs are great – loaded with preservatives and pre-cooked!
Enjoy, but be careful!
Ellen
I am not sure what to tell you in terms of your diet. There is variation on that score, as well, among "experts." My appetite and digestion was so poor for quite awhile after the transplant, that I really couldn't even think of having fresh fruit! So, that is a good quandry to be in. When you left the hospital, they must have given you instructions regarding what to do at home in terms of lifestyle, etc. Maybe take a look at that, if you have it.
I would say to err on the side of caution at this point, especially since you have a rash. Summer fruit can be allergy-inducing, and fresh fruit and veggies have bacteria on them. I know it's a drag, but I would wait to speak to my doctor first. Maybe you can still reach someone today at the hospital? Don't be shy, I always called when I had questions, even if it was at an "inconvenient time." It's the middle of the day, someone may get.back to you later.
Have a great weekend, and make sure if you go to a barbecue that the meat is well cooked! You don't want to pick up anything from undercooked meat. Also, I would be careful not to eat anything from a communal source, or anything with mayo that has been outside too long in the heat. Sorry to be such a bummer, but hot dogs are great – loaded with preservatives and pre-cooked!
Enjoy, but be careful!
Ellen
Re: AC's stem cell transplant in South Florida
Still having my itch and rash. The dermatologist conducted an IgE test which came out high. Can anybody let me know what this means and what it could mean is the cause of my rash/itch?
Component Your Value Standard Range
IgE Level 183 kU/L ≤ 114 kU/L
Component Your Value Standard Range
IgE Level 183 kU/L ≤ 114 kU/L
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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