Add informations about my condition Amyloidosis (AL) with only one organ affected, the liver

DX in april 2011, I had my sct on february 2, 2012. Right now after 14 months, my health is better and continue to imporove without major problem. But week and fatigue continue to be my main problem and I must sleep about 2 to 3 hours during the day afther an 8 hours sleep during the night.Afther my SCT, I have received many vaccins and the last group (three vaccins), near 3 months ago. Those last vaccins does have an important effect on my fatigue. But since the last 15 days I feel stronger and able to resume my walk about 1 hour, 4 times a weak and doing works around my house.

I have a VGPR (very good partial remission) and there are 2 things that are not normal. First they are not able to give me a ratio for my free light chain because their number is too small. I would like to know if someone have this problem and I would be very happy to have more information about that. My hematologist told me that this had no impact on my health.

My other problem for not having a CR ist hat my Alkaline phosphatase (from my liver) is quite hight, about 325 down from 500 six months ago. I think the normal is around 125.

So my health is very good and I don't get chemo since my autolongus transplant. I am planning to have many activties outside, since the snow is completely melted now.

I am still in CR from my NHL (a stage 2 lymphoma) that I had in 1991.

Excuse my bad english.

gaetanche.

Do you know the unit of measure for your free light chain test? Is it mg/L or mg/dl? The normal ratio for either unit of measure is 0.26–1.65. Do you know if you are lambda dominate as are most patients that have AL Amyloidosis? A few years ago it was thought that the ratio being normal or close to normal was the most important thing. The doctors have changed their way of thinking and now they pay more attention to the dominant light chain and will track that number to see if it is rising or falling. Absolute values in the serum free light chain assay can vary from lab to lab due to the following:

–Different analytical instruments

–Different kits for different instruments

–Normal lab to lab variation

LAB VARIABILITY

If you change the laboratory where your serum free light chains are measured:

–If possible, obtain some of the last sample and run it along with the new sample or

–Establish a new baseline for your serum free light chain levels.

The change in your absolute sFLC level should not effect the clinical interpretation.

********************************************************************************************************

To understand more about the FLC test go to www.wikilite.com which is the web version of the Binding Site Book on the test. You will want to click on the link for Chapter 15 to read about how it is used in Amyloidosis. Please let me know if you have any other questions.

Gaetanche, it's good to hear from you. I am so glad that your health is getting better, and that you are resuming your normal activities. That's wonderful news!



gaetanche said: Thanks dancermon for your kind words. Yes it is great to resume near normal activities. I am retired, so I do not have the stress to going at work and have 8 hours of work per day. I was DX for my amyloidosis at 59 years, only 3 months after the beginning of my retirement in January 2011. .

Thank you very much ga_peach for the great information you gave me. www.wikilite.com It will help me to better understand FLC.
I do not know the unit of measure of my free light chain test. The only information I have is that my number of FLC is to low for knowing the ratio. I do not know the test they choose for seeing my FLC.

I can add that my FLC are the type 'Kappa' dominate, thus I am different from most patients that have AL Amyloidosis. From what I read, Kappa is better than lambda.


I have problem with replying to ga_peach

Only a fraction of my text is visible.

I continue...

I do not know the unit of measure for my free light chain tests.

Having a very low number of FLC without knowing the ratio is perhap not a bad thing, What do you think about that?



gaetanche said:

Saving…

The lower your FLC numbers are the better. However, I have never heard anyone say that their numbers are too low to determine a ratio. Where are you treated in Canada? Dr. Donna Reece is the amyloid specialist in Canada and she is at Princess Margaret Hospital in Toronto. If you have not seen her you may want to consult with her about your results. Her email address is ■■■■■■■■■■■■■■■■■■ and her phone numbers are:

416-■■■■■■■■ (Primary)
416-■■■■■■■■

(FAX)

Office Address:

Princess Margaret Hospital
5th Floor Rm 207
610 University Ave
Toronto, Ontario
Canada M5G 2M9



gaetanche said:

I have problem with replying to ga_peach

Only a fraction of my text is visible.

I continue...

I do not know the unit of measure for my free light chain tests.

Having a very low number of FLC without knowing the ratio is perhap not a bad thing, What do you think about that?

Thanks again ga_peach for great info. That is very important for me.

I am treated in Quebec city, province of Quebec by the same hematologist that treated me back in 1991 for a stade 2 NHL lymphoma that I am in CR since then! My very hard treatment received at that time in 1991 and 1992 was 12 chemo in 12 weaks and 18 seances of radiotherapy. For me it was tougher than my auto transplant of 2012.

This same excellent hematologist treated me for my amyloidosis AL and the decision making process for my case is made by the team of hematologist of the hospital, because of the complexity of this orphan disease. I receive excellent treatment, I got a VGPR.Only good news since my transplant. I will talk with my doctor for the ratio problem during my next visit and I will see after that if I need to get more info.



ga_peach said:

The lower your FLC numbers are the better. However, I have never heard anyone say that their numbers are too low to determine a ratio. Where are you treated in Canada? Dr. Donna Reece is the amyloid specialist in Canada and she is at Princess Margaret Hospital in Toronto. If you have not seen her you may want to consult with her about your results. Her email address is ■■■■■■■■■■■■■■■■■■ and her phone numbers are:

416-■■■■■■■■ (Primary)
416-■■■■■■■■

(FAX)

Office Address:

Princess Margaret Hospital
5th Floor Rm 207
610 University Ave
Toronto, Ontario
Canada M5G 2M9



gaetanche said:

I have problem with replying to ga_peach

Only a fraction of my text is visible.

I continue...

I do not know the unit of measure for my free light chain tests.

Having a very low number of FLC without knowing the ratio is perhap not a bad thing, What do you think about that?

Thanks for informing us of your great progress! You write good english, gaetanche! Keep Staying Strong and Positive!

I have also been told the numbers are too low to get results I just don’t understand any of this