Severe anemia

[Elremsetay]

Since diagnosis at the beginning of May I have completed three rounds of FCR treatments. The first cycle went well and before second cycle my blood counts were close to normal (low lymphs). After second cycle everything started to go down and my third round was put off for two weeks while my counts improved. Many counts were low but not far out of the normal range. After my third cycle (July 12,13,14) my counts continued to decline and I picked up a bug. I never had more than 100F temperature but had a dry,dry cough that was exhausting. Finally dragged my self to my primary care physicians office and was given prescription for Ceftin. After a couple of days and feeling worse I went back and was sent for chest X-ray and give prescription for inhaler. The inhaler worked well. Got dreadful headaches that otc acetaminophen could not deal with. Called oncologist/hematologist to let them know what had been happening and was prescribed stronger pain meds for my headache. Only took one and had an ok nights sleep. X-ray showed small area of opacity (pneumonia) when I went for follow up with my primary care on Monday. Next day (Tuesday - yesterday) I had appointment with oncologist/hematologist - hemoglobin level had now dropped to 5.2, (it was 8.6 previous week) hematocrit:14.5, wbc:1.9, rbc:1.6, plt:143, abs.neuts:1.3, aly: 0.1. I was sent directly to hospital for transfusion - three units - I have been home now for about and hour and feel much better - my husband said I looked like a corpse yesterday - I have pinked up. My levels are all still low: hg:7.9, hematocrit:21.9, wbc:2.4, rbc: 2.5, plt:113, abs.neuts:2.2, aly:0 (2%).

My oncologist started to talk about dropping Fludara part of FCR and then talked about other things that I was not ready for and so could not ask any intelligent questions. I would appreciate any insight into why my blood counts are acting the way they have and what questions I should ask my hematologist/oncologist when I see him next week.

Thanking you all in advance! Liz.

[Cammie]

Liz

FCR affects all blood cells and anemia is not uncommon during treatment you have to remember chemotherapy is basically poisoning your system in order to kill of the cll cells. Unfortunately unlike the Rituximab which targets cd20 on the cll cells the other chemo drugs can not be targeted and therefore attack all that gets in their way!

You need to discuss your counts with your med team and ask why the cells have reacted in the way they have in your case.

We all react differently to this treatment depending upon our constitution and any comorbidities we suffer from.

Reaction to other medications we take are also important.

I can't offer advice from the medical point of view in your specific case but you should ensure you get the full story from your team.

Geoff

[Elremsetay in reply to Cammie]

Thanks Geoff,

I understand that anemia is not uncommon and we all progress differently through treatment.

My Doctor mentioned something about my the stem cells that make my red blood cells have been destroyed (by fludaribine) - it was not hemolytic. I feel so ignorant - it is so difficult to learn all the terminology, let alone how the disease manifests itself in blood tests, exactly how the treatment should work and why it doesn't always go as planned etc, etc. To be able to understand all this after just a few months - it took our doctors years of training - I find overwhelming and sometimes too scary.

I will certainly go armed with spreadsheets of my blood counts and graphs etc and ask when I meet with my Dr next week! He is usually a good explainer - but didn't really have time today as he was making his hospital rounds.

[Cammie in reply to Elremsetay]

Yes as I said the chemo drugs kill off cells in an untargeted way. It appears to me from what you have said that in your case the fluradarabine has actually done too good a job on your bone marrow and it has been affected in that the red cells are not forming in the bone marrow.

Just to say I actually stopped FCR after 3 sessions because my white cells and Nuets were not recovering quickly enough. The concern was that my bone marrow would not recover correctly if I continued with treatment . It took 8 weeks with booster injections to get back up to a decent level.

It appears you have the same problem with red cells.

Hope all goes well with your consult .

Geoff

[Elremsetay in reply to Cammie]

Have you been offered alternative treatment or was 3 cycles FCR enough?

[Cammie in reply to Elremsetay]

It's not uncommon for patients not to complete the advised six rounds of FCR.

I was not offered any other treatment as the cocktail had basically done its job and too well!

Been in remission for 15 months so far.

Fingers crossed for you!

Geoff

[Elremsetay in reply to Cammie]

That's great! I hope you continue to stay in remission for much longer. Thank you for your kind words and advice, you have given me a reason to be more hopeful🙂

[MsLockYourPosts Passed Volunteer]

Take a recording device to your appointment. It helps to be able to relisten to what was said when things get technical.

[Elremsetay in reply to MsLockYourPosts]

Good idea. I'll certainly do this next week!

[pdm777]

You might want to take a look at AIHA right away ! ! !

Fludarabine is the agent that can create AIHA.

FCR- fludarabine, cyclophosphamide and rituximab

My treatment was switched to BR, and that worked for me.

21 transfusions later, I survived!

[Cllcanada Top Poster CURE Hero in reply to pdm777]

Interesting... I was just reading a paper about Bendamustine/rituxan and AIHA...

Although the exact mechanism responsible for the development of AIHA in CLL is still unclear, it is well established that the risk is greater in patients with aggressive disease and with poor prognostic features, including unfavorable cytogenetic abnormal- ities and UM IGHV genes, as was also observed in our series. In conclusion, BR is a safe and effective regimen that does not increase the incidence of AIHA above what is observed in untreated CLL patients.[1]

The greater incidence of AIHA in patients receiving BR as second compared to those receiving BR as first-line treatment is most likely due to greater immune disturbances associated with more aggressive disease and repeated rounds of treatment.

Overall, these data suggest that the BR regimen does increase the risk for AIHA only in CLL patients previously pretreated with UM IGHV genes and/or unfavorable cytogenetic abnormalities as del11q22 and del17p23; it can be safely administered even to patients with a previous history of AIHA or a positive DAT.

Abstract

dx.doi.org/10.3109/10428194...

[pdm777]

CllCanada- to be clear,

AIHA in my case was a result of FCR, not BR.

I was quickly switched to BR when AIHA was diagnosed.

Red counts can fall dramatically with AIHA.

One day after doctors visit (noted low hemo count)

I was at home, passed out, and had a heart event due to low RBC.

Several transfusions later at the ER, I came out of my anemic fog.

nothing to fool around with! get checked out- find the cause of low RBC.