CLL and Cold Blood

[nvparmelee]

Hoping someone can help.... my uncle has CLL but also a cold blood condition called Agglutinin... has anyone heard of it?!? He lives in central Florida. I am putting him in touch with a dr javier Pinilla for a 2nd opinion? He literally sits in his house with hats/socks/sweatshirt because his body temperature is so cold. Any input would be appreciated!

[WinJ3]

I never heard about it.

I am glad you are having a CLL specialist look into it. Dr. Javier Pinilla-Ibarz of Moffitt is an excellent CLL specialist. I see him to help manage my condition.

Hoping the best for your uncle.

Win

[cajunjeff]

I think what you are describing is a type of hemolytic anemia (AIHA) which is an autoimmune disease where our body attacks our own red blood cells. Hemolytic anemia can be triggered by cll and up to 10% or so if us will get it.

They are not really sure how cll causes AIHA. One theory is that our body generates antibodies to fight our cancer and those antibodies mistakenly attack our own red blood cells.

Agglutinin is a cold body version, a bit more rare from what I understand. But it is treatable and can be managed. With a cold body version, the antibodies are active at colder temperatures. So one treatment is to stay warm and not drink cold drinks.

The usual strategy with hemolytic anemia is to get it under control with steroids or a drug like rituxumab and then treat the underlying cll. If his cll gets under control, it can keep the agglutinin from recurring.

I dont know much about the cold body version of the AIHA you are describing, but I assume it is a type of autoimmune disease related to his cll.

It can be a serious complication, so its good your uncle is seeing a doctor soon, hopefully a specialist. There are treatment options. I had a different type of AIHA than your uncle has, mine is under control now.

[nvparmelee in reply to cajunjeff]

omg this is so helpful! where are you located? which doctor? cajunjeff sounds like maybe Louisiana

[cajunjeff in reply to nvparmelee]

Glad you found the info useful. Yes, I am in La, high and dry but still without power. Dr Pinilla is a cll expert and he should be very familiar with AIHA and all the treatment options. Autoimmune disorders can arise with cll and most all cll specialists are proficient in dealing with them. Good luck.

[GMa27]

Never heard of it. I saw Dr. Pinilla for second opinion. Also Mayo Clinic is supposed to be excellent in JAX. Is he closer to Tampa ?

Glad be will get second opinion. 🙏

[MsLockYourPosts Passed Volunteer in reply to GMa27]

Dr. Chanan-Khan is the big name at the Mayo - Jacksonville,

[GMa27 in reply to MsLockYourPosts]

Thanx yes that's him. I heard he has taken a leave of absence. No one knows how long or why.

[MsLockYourPosts Passed Volunteer in reply to GMa27]

I hadn’t heard that, but I’m sure he as associates in his group who have worked closely with him. I hope he’s OK.

[lankisterguy Volunteer]

Hi nvparmelee,

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We have had 6 previous postings that included the word Agglutinin- click this link:

healthunlocked.com/cllsuppo...

There may be some usefull information beyond the excellent reply from cajunjeff and others.

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Len

[Britam]

I have CLL and warm body AIHA and my specialist is Dr. Pinilla who is wonderful. I also have a local oncologist/hematologist as I live 4.5 hours away from Tampa but am willing to make the trip when necessary as Moffitt Cancer Center takes good care of its patients.