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CLL Support Association
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Anyone?

Been under W&W until last month! Became very anemic! Just has bone marrow biopsy yesterday. Had blood transfusion tiday. My blood count got down to 6.8. Doc says my red blood cells are being destroyed! Stay anemic, immune system way down and staying dehydrated! He thinks I have secondary blood disorder! Acquired from my CLL which has become active. My white blood count has doubled in one week!

“ acquired autoimmune hemolytic anemia”

Anyone else????

Mimi in GA

My doc is very concerned; says he can’t figure out what’s going on! MEDICAL MYSTERY!!!

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AIHA is a cytopenia, not too uncommon in CLL. There are a number of CLL patients here with it...

Its sometimes treated as a separate issue from CLL.

~chris 🇨🇦

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Can this be fatal? Can it be treated successfully?

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Often they will treat with rituxan or they may decide to treat both AIHA and the CLL, with something like bendamustine/rituxan [BR]. Dexamethasone is used sometimes, its a corticosteroid.

Its a complication of CLL and also many treatments as well, I have no idea if it's fatal... it can be managed and treated, certainly.

~chris 🇨🇦

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Thank you so much.

Mimi in GA

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Hi Mimi! Sorry to read this.

Are you presently on any meds for CLL?

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No! Now on 60 mg steroids a day! Had bone marrow biopsy yesterday and blood transfusion today. You are right, you feel really bad!

Mimi in GA

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No, just steroids. White count is really climbing fast!

Mimi in GA

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Maybe u need treatment.

What did the hematologist say?

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Waiting on bone marrow biopsy to come in; red blood cells keep being destroyed and keeps me anemic! 😫

Where is my strength ? Really feel

Crappy!

Mimi

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How is your sleep?

I can send u some relaxing sleep music if u like. Works wonders

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My sleep has become NONE! Big bags under my eyes! 😩

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I will send u something

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Hi Mimi

What you are experiencing happened to me in April/May last year. I was on watch and wait then I became anemic. My Dr. said I needed to start treatment for SLL but then he had to delay treatment to give me blood transfusions to address my anemia. I then began treatment (BR) and for the first couple of treatments my hemoglobin kept falling bottoming at 5.3. By the third treatment my hemoglobin levels started to increase. I think I had 4-weeks of blood transfusions starting before treatment and interwoven between the first 2-3 BR treatments. I was lifeless for a while. The important thing for you to know is it is not uncommon, it can be treated and you will get better. Please stay positive.

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Mimi: Are you at a large hospital? One thing my doctor did, which I was unaware of at the time, was consult with a CLL specialist at the same hospital. I was being treated at a suburban oncology center and he was consulting with a CLL specialist in the hospital’s Boston headquarters. You should ask if he has access to a CLL specialist either at the same hospital or at another hospital. This is likely your best option given that you are anemic and need care now. Don’t be afraid to ask questions.

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I go to John B. Amos cancer center. My doctor is an oncologist and a hematologist. Waiting on bone marrow biopsy.

Mimi in GA

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Hi Mimi: It looks like Winship Cancer Center at Emory University in Atlanta has 4- CLL specialists. I don’t see any other CLL specialists in Georgia. Can you ask your doctor if he can consult with one of these doctors?

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That was just mentioned to me today about Emory. Yes I will, thanks!

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The one name I have seen before, of the 4 doctors listed at Emory is Dr. Christopher Flowers. Hopefully someone will know more about him or the other three.

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The advice of any of these 4-individuals will be good. When there are groups of CLL specialists like this it means they are likely doing research. Groups are usually collaborative, too. Four is a big group of CLL specialists and Atlanta is a big US city. I’m certain Winship is a good place to get CLL advice.

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Thank you so much for your insight. I am only less then 2 hours away from Atlanta. I will certainly speak with my doctor about it.

Mimi in GA

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If you haven't had a FISH test done, it can also be done as part of a BMB if you are going to have one done.

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Hi Mimi

Ask your doctor’ if he will be checking mutational status from the BMB results to help determine treatment. That is what they did with me at the time. Don’t be afraid to ask questions.

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TREATMENT! My biggest fear!!! I get the nausea and vomiting from The least meds; then my weight starts dropping, MY FEAR!!!

Mimi

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Mimi, your white count is rising because of the steroids and is nothing to worry about. It will come down again when the steroids are tapered off as your AIHA comes under control.

Your Dr should be familiar with AIHA as a complication of CLL. If he's not it might be a good idea to find another Dr who is more familiar with the complexities of CLL.

Jackie

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Interesting! This is such a complicated blood cancer to understand. My problem is not knowing what questions to ask! And his intellect is so above mine that I certainly become overwhelmed with his information! !

I do have a degree, just not in the medical field!

Mimi in GA

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I think he feeds me as little information as possible because when he starts talking, I start crying from anxiety!

Mimi in GA

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😓😓

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Mimi, here is a post of about a month ago that is about acquired autoimmune hemolytic anemia.

healthunlocked.com/cllsuppo...

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Mimi I had AIHA and it’s quite scary because you feel so bad it’s even hard to process information.

I worry if you have the right doctor if you doctor can’t figure out what’s going on. There are many different options to treat AIHA which would be well known to any Cll specialist.

It’s highly likely with proper treatment you can get your AIHA under control. Steroids, rituxin and ivig infusions are among your options.

There is a good chance your rising wbc triggered you AIHA. Once they get the AIHA under control they can treat your Cll which should keep your AIHA from coming back.

Ibrutinib is known to be effective treating Cll and controlling AIHA.

You need to be sure you are seeing a Cll specialist as he or see will certainly know your treatment options. I thought I might die too I felt so bad. But I am doing fine now and am confident you will be okay. Jeff.

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Hi Mimi I had AIHA just prior to treatment which started in March 2018, CLL related .

I was successfully treated with steroids and a drug named MMF (sorry I have forgotten the full name).

I am now on the Flair trial on on rituximab and Inrutinib arm. Only ibrutinib after 6 months and doing extremely well.

Try not to worry this can be treat successfully.

Ann

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Oh thanks so much for your reply! I lost my mother and two brothers to CLL; so all I can think is dume and glum!

Bless!

Mimi in GA

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Mimi: There have been many advances in the past 5-years. Still a tough disease but not as difficult as it once was. A positive attitude and a good relationship with a CLL specialist can take you a long way.

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Thank you so much!

Mimi

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🙏💕

Update when you can.

Record appt with permission. So much information so it's good to have to play back.

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Is there someone who can go with you to ask questions? Emory might have social workers who will do that, if not. In this age of technology, you could even have a friend on speaker phone to help you get your answers.

Steroids can really mess with your emotions. The doctors will be accustomed to teary patients - new ones who are still in shock, those being told that they need treatment, those on steroids. Write out your questions, have a copy for the doctor and one you or a friend can take notes on. And record the appointment. That way you can listen to things again at home.

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Good thoughts! Thank you!

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It could well be AIHA brought on by the CLL - this is rareish, but a good CLL specialist will know about it. If (first line of treatment) steroids don't halt it , there are many secondary lines of treatment. In my case, splenectomy (was 53, so took operation in my stride and surprisingly totally pain-free) and I have just passed 5 years since the op. Long may that last...

So there are treatments, rest assured. But you need specialist CLL doc (ie regional centre person)

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