What is happening?: Hello!! I had terrible... - CLL Support

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What is happening?

aylinozel profile image
21 Replies

Hello!!

I had terrible 2 days. Our doctor couldn't continue with RB theraphy because my husbands HGB counts only 5. They started to blood transfusion and made a Bone Marrow biopsy. The doctor said he has to find the reason of this low HGB, maybe the CLL has transformed to something else.

We have to wait for 2 days for the result. Anyone has an idea of what is happening?

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aylinozel
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21 Replies
Jacksc06 profile image
Jacksc06

Hi Aylin. I am sorry to hear about Your husband. I can't think what might be happening. Keep asking questions at the hospital until you get answers. Best wishes.

aylinozel profile image
aylinozel in reply toJacksc06

Thank you Jack

Bubnojay profile image
Bubnojay

Wish I had an answer for you, you must be so worried. I hope they will get to the bottom of this problem very soon.

Just wanted to let you know others care about this situation you find yourself in and wish you well.

Love hugs and best wishes

Bubnjay1

aylinozel profile image
aylinozel in reply toBubnojay

Thank you for your kind message:)

AussieNeil profile image
AussieNeilPartnerAdministrator

Most probably what has happened is that the BR has suppressed your husband's bone marrow function while there is still a lot of CLL infiltrating his bone marrow. His doctor will most likely delay starting your husband's second BR session for a few days to give some time for his bone marrow to recover. Other members have also gone through this experience - needing to delay treatment, sometimes with blood transfusions to boost blood counts until the bone marrow recovers. While this will be a worrying time for you both, your husband is receiving good care.

Neil

aylinozel profile image
aylinozel in reply toAussieNeil

Thank you Neil, his doctor said the same thing. The treatment will be delayed for 2 weeks. Meanwhile he will do some test so we can be sure that CLL hasn't transformed to a more aggressive lyphoma.

Thanks again for your caring response

Aylin

cllady01 profile image
cllady01Former Volunteer

Aylin, this is a information on the Red Blood cells from a very erudite lady who provided early internet information as she tended to her husband who had CLL. It is long and involved, but, hopefully, is information you can use.

updates.clltopics.org/1587-...

aylinozel profile image
aylinozel in reply tocllady01

Thank you cllady :)

I agree with Neil’s comment. I can sympathise with how he must be feeling as my HGB count was 52 when I was first diagnosed which pretty much leaves you bedridden, the most likely cause is his bone marrow is full of Cll making the job of producing red blood cells very difficult.

If this is the case he will more than likely require a few blood transfusions to bring his levels out of the danger zone and he can then commence therapy.

Good luck

Stuart

kaymack profile image
kaymack

It's possible the RB has caused the massive drop in haemoglobin. During the year after I finished FCR, I had two episodes of cytopenia (large drop in blood cell counts - Hgb, WCB and Platelets). This was eventually attributed to a delayed reaction to the FCR. My counts recovered within a few months and now it's three years later and the counts are still within normal levels and I remain in remission.

All the best,

Kay

aylinozel profile image
aylinozel in reply tokaymack

Thank you Kay :)

jaypax profile image
jaypax

The previous comments are right and your husband should soon receive a transfusion, could be a red cell only transfusion. I have been through BR therapy and it did involve quite a few transfusions. If you are concerned, ask to speak to the consultant haematologist who is responsible for his care. The nurses on the chemo unit are often very knowledgeable and experienced so maybe a chat with them may help you. Best wishes to you at this difficult time. Onwards and upwards!

aylinozel profile image
aylinozel in reply tojaypax

Thank you Jaypax it is such a relief to hear that someone has passed the same way. Best wishes!

Aylin

Wessex profile image
Wessex

Sorry for asking but what does RB or BR stand for?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toWessex

BR = Bendamustine/Rituximab

aylinozel profile image
aylinozel

Hello Wessex, these are the drugs (Bendamustine,Rituximab) used for the treatment

Winsey profile image
Winsey

Wishing you the best , my thoughts are with you.

Winsey profile image
Winsey in reply toWinsey

Thank you, I hope all does well.

aylinozel profile image
aylinozel

Thank you Winsey 😍

Fant1924 profile image
Fant1924

Transfusions should be blood that is irradiated and leuko-reduced blood.

Dennis, 70, Ibrutinib

casanova profile image
casanova

My hb count also dropped to 5 in treatment and I needed several transfusions as it kept dropping. However it finally stabilised and improved. I hope the delayed treatment will allow your husband's Hb to recover with or without blood transfusions.

Maureen UK

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