New to the group and would greatly appreciated advise. Husband recently diagnosed with SLL and cold agglutinin.

[Saratoga]

Need advise, doctors want to start treatment with chemo (BR) for six months the cold anggulition seems to more of he issue. Red blood count changes from 10.3 to 8.6 back and forth weekly. Would really like to speak to someone is there anyone that can shed some advice thru personal experience. I would be happy to call. Many tks cathy

[zevkalman]

Hi Cathy, sorry about the diagnosis. I am not a trained medical professional so I can't offer any help, but I do encourage you to get the advice of a real CLL/SLL specialist, or even more than one CLL/SLL specialist, before your husband starts chemotherapy. I don't know much about cold agglutinin except that it is an autoimmune disease and it is sometimes treated with Rituximab (the "R" in "BR"), and it is important to avoid cold climates (which, looking at your picture, you do). We don't know the particulars of your husband's CLL/SLL or biomarkers, so it is hard to know if he should be treated or not. Also, sometimes SLL is NOT treated the same way as CLL is (e.g., BR), so I encourage you to get an expert opinion.

[Cllcanada Top Poster CURE Hero]

Zevkalman..

I thought CLL and SLL were treated the same way... have you got a study that indicates the bendamustine/rituxan BR is inferior in SLL? Just wondering where your statement comes from...

[zevkalman in reply to Cllcanada]

Hi Chris, I was only thinking (and please correct me if I am wrong) that if Cathy's husband SLL was only stage 1 or 2 (using the Ann Arbor criteria) so the lymphoma would be localized to single group of lymph nodes then it may be curable by radiotherapy (you recently spoke about this, and I initially read about this in Chaya's site)

updates.clltopics.org/1993-...

In that case, maybe it would be better to have radiotherapy instead of BR, but again, I don't know the stage of the husband's disease, and I am not trained medically, so my opinion is pretty useless. I think that his best bet is to see at least one or two CLL/SLL experts.

[Quarry]

Cathy

I was diagnosed with CLL 18 months ago - actually I did not realise it till a few months later, the really immediate problem was Auto-immune Haemolytic Anaemia (AIHA) that was triggered/caused by the CLL.....and which has several types (apparently 1 in 10 CLLers get AIHA too, though I find that hard to believe as v little written about it)....I had a warm-type AIHA that did not get cured by steroids (predisone), so I had my spleen out (it was over 12 times normal size) in Jan. Now feeling good and bloods to date good.

I have never heard of agglutinin...but a quick look at wiki indicates it is another form of AIHA. I don't know if warm-type or cold-type (even rarer), so worth asking. the low red bloods could be explained by AIHA (basically your mutated white blood cells attack you red blood cells) - worth asking about reticulolcyte (baby red blood cells) levels - they should be higher to compensate for the destruction - they are produced in bone marrow and if high, whilst it shows red blood cells are being destroyed, it is a good sign bone marrow is healthy!

NHS treatment guidelines indicate AIHA should be treated before any SLL/CLL treatment - it will depend though upon age (he does not look old unless photo was many years ago!) and state of SSL/CLL. In my case, I have only been treated for AIHA and (touch wood) the CLL appears way way off treatment.

I do not know if treating agglutinin alone, what the treatment would be I am afraid....that is one path I have not been down! However, do ask about individual treatment (ie not SLL linked) - it took me too long to realise the 'separation' between CLL and AIHA and that my problem (at the moment) was not CLL, but AIHA alone

Do ask more questions - first lesson is each CLL+ path is unfortunately pretty unique.....

Andy

[Saratoga in reply to Quarry]

Thank you for your reply, sorry I have had a bad month with my husband. He is being treated via boston hospital for the cold aggulinitin because that is more of an issue like yourself with the aiha instead of the lymphoma. The lymphoma would not be an issue right now. He has had one month (a two day treatment) with rituxam and bensamustine via iv.. He went through that fine until 12 days later I found him on wed in the middle of the night at 3 a.m. flat on his back. Rbc was down to 7.2 in a sweat, fever 102.. Still in hospital much better today no fever all vitals good drs can't seem to get blood level high, he has hd 5 blood transfusions already. Very confused.. Any advise.

Cathy

[Hidden]

Hi Cathy,

I jjust discovered HU, and came across your posts while looking for others with this rare combination. FYI, there are two others in the UK on HU with older posts. Happily, I receive a reply from one of them who is struggling with the cold....not surprising, but managing to deal disease. Sounds familar.

I was also diagnosed with CLL/SLL and Cold Agglutinin (CAD) Autoimmune Hemolytic Anemia in 2015. You can read more about my story on my homepage. I am 64 and live in Southern California.

First of all, I hope this message finds your husband and yourself doing well. So far I have only been treated with two Rituxan sessions, and about a month ago, I had my first blood transfusion with an inline blood warmer because of the agglutinins.

I also see Dr. Davids at Dana Farber in Boston once a year to keep up with the latest research and CLL and CAD. In additon, I recently heard of a drug in phase III clinical trials specifically for CAD called Sutimlimab. My local hematologist/oncologist did not know about this so I will ask Dr. Davids if he has any information about it on my annual visit in August.

Best wishes!