Bloodwork Results and possible new added diagnosis....Amyloidosis

[loveRicky]

I got some bloodwork results back. The highs and lows were as follows: The lows: rbc 3.45, hemoglobin 10.9, platelets 129, Immunoglobulin A 58 and eGfr 48. The highs: MCV 99, creatinine 1.17, free kappa light chain 31.5. It stated the CBC had to be warmed to 37 degrees which may indicate cold agglutinins or the aggregation of platelets. The Cold Agglutinin test was negative.

I was diagnosed with Waldenstroms Macroglobulemia in 2012 and after experiencing extreme fatigue, terrible night sweats recently was diagnosed with CLL. I am on W & W.

I was informed I should have a fat pad biopsy done from the stomach or bone marrow to confirm amyloidosis.

Is anyone familiar with any of this? Could Amyloidosis be a part of CLL? I really do need to find a doctor who specializes in these diseases.

I am trying to be positive, but I must be honest....I am scared. IF ONLY my husband were here to go through this journey with me. I know he is with me, but I would feel so much "safer," IF I could put my hand in his.

Thank you so much for letting me vent and for your help and support.

Blessings!

[lankisterguy Volunteer]

Hi loveRicky,

While I don't know anything about it, here is a list of the 5 past postings that mention Amyloidosis

healthunlocked.com/cllsuppo...

And a support organization for it: amyloidosissupport.org/

TOLL FREE HELP/HOT LINE: 866-404-7539 EMAIL: [e-mail]

>

And 15 for Waldenstroms healthunlocked.com/cllsuppo...

There is also: iwmf.com/ International Waldenstrom's Macroglobulinemia Foundation that has support group iwmf.com/get-support/

>

And I am aware that my CLL expert doctor is also a well known expert in WM:

NY Presbyterian Weill Cornell, New York, NY Richard Furman [e-mail] nyp.org

>

Len

[loveRicky in reply to lankisterguy]

Thank you so much for your help. I will check each website. I am already registered with the Waldenström's Group. They were very helpful and supportive.

[ArtistBlacksmith]

Hi, The amyloidosis is unlikely to be related to the CLL. It can occur in conjunction with it but unlikely to be linked or caused by it. I hope your tests show you to be clear of it

[LeoPa]

Amyloidosis made me think of amyloid plaque buildup in the brain which is associated with Alzheimer's and Parkinson's. I don't think there is anybody your age who does not have this condition to at least some extent. Here's a video you might find of relevance. Don't just take the word of Nick Norwitz, MD, PhD for it (I do). Feel free to investigate the subject further.

[LeoPa in reply to LeoPa]

YT vid.

Screenshot

[NYCBill]

Ricky. My cardiologist recently tested to rule out amlyodosis when I complained of flagging energy, a few other things. He said amlyodosis does occur more frequently in patients with blood cancers. I read up on Mayo Clinic etc and it was noted as such, though no etiology/causality given. The good news is that they’re apparently making progress fighting it, and tests will tell you where you stand. … I had to drink a fluid with magnetic markers (I believe) that are picked up 3-4 hours later on a Geiger- counter like reading of the heart. Plus a stress test. I was fortunate I’m ok and very grateful. But the tests your doctor cites should tell you and they’re making progress on it. Best of luck. Bill

[loveRicky in reply to NYCBill]

Thank you so much, Bill. I have had lympedema for at least 2 years. It began in the left leg and now the right is getting discolored. The left has many sores on it and I must be careful to not get sepsis. I did read that amylodosis can cause lymphema because the plague prevents the lymphatic system from working the way it should. I am also getting many growths on my body...reddish in color and raised...some itch. The neuropathy is bad and my balance is terrible. NOT COMPLAINING.....I am thankful for each day I open my eyes.

sores on left leg....wanted to show to see if anyone has experienced the same thing.

[NYCBill]

Ricky. I understand. Keep up the good spirit, and good wishes. Bill

[JA2326]

Hi Ricky. Amyloydosis is often mentioned as a symptom of Waldenstrom’s. I was diagnosed with WM last year. Although I don’t have amyloydosis yet, my IgM numbers have been rising, and amyloidosis is a distinct risk for me down the road. By the way, what is your WBC count like? Mine has been rising as if I also have CLL. Does WBC count rise for “pure” WM patients as well?

[loveRicky in reply to JA2326]

I apologize...I had a family emergency and wasn't online for several days. It is very common for WM patients to have abnormally high wbc. I just checked the treatments I had for WM and will list them now. Sept. 2012, 4 rounds of rituxan, April 2013, 5 cycles of bendamustine and rituxan. July 2013, had plasma pheresis. Nov. 2013, 6 cycles of Rituxan, Cy and Prednisone. June 2014, trial with Ibrutinam, which I had to stop due to nodules appearing on my legs which could have been from drugs or from the disease. I then saw doctors at University of Penn for a stem cell transplant. After being told there would be a high risk of morbidity/mortality, I chose not to go ahead. Incidentally, my brother was the closest match. The AMAZING thing, I am still here to talk about all of this, which maybe wouldn't have been the case IF I had done the stem cell transplant. To all....have a blessed day....we opened our eyes to a new day! 😄

[loveRicky in reply to loveRicky]

I forgot to mention....it seems my skin was affected somewhat with the chemos. I literally had cold sores all over my face and had to take a drug called Valacylove. I must share this story. I went to the grocery store and put my food on the belt. I remember seeing a man behind me with a leather jacket on. After I had my food on the belt and turned my face, he said....Ewe! What is wrong with your face??? I looked directly at him and said....I just had chemo, do you have a problem with that? So not me....but how could anyone do what he did? The cashier looked at me and winked. It takes all kinds of people.

[GigHarbor]

my brother has it. There are meds to treat it. It can be genetic or wild type. Signs include carpal tunnel, spinal stenosis and cardiac issues as it collects in those places along with the brain. There are also studies of new meds out there. It is treatable.