FCR and immunosuppression

[Jotame]

For those of us who have had FCR chemotherapy would we expect to be immunocompromised in the long-term? I think here lymphocyte and neutrophil levels are relevant.

[JigFettler Volunteer]

Yes!

Ive had FCR - 2018. 10 months on low Neuts, very low Lymphs and immunoglobulins are low... like 20% of normal. I can assume my other cells eg T Helper Cells etc are also in smaller numbers and probably not talking to each other properly. This can continue for 2+ years.

I have told authoritatively that ones infection vulnerability cannot be deduced from the numbers. I have no infection since diag 4 yrs ago and FCR last year.

In the UK assisted regimes, various stimulating factor injections are only considered for repeat infection. So I am maxing out on Infection Protection. Please my earlier post!

CLL in any case imparts a weakened immunity for life.

What is your situation?

Jig

[BellaBee10]

Immunoglobulin levels are declining. Not sure if that’s FCR related as I think they are supposed to recover after time. I’m a couple of months short of 3 years past my 6th round now.

[AussieNeil Partner Administrator]

To extend your question, it's not only the lymphocyte level, but also the make up. You want a return of healthy B-cells that will respond to infections and vaccines and mature into immunoglobulin producing plasma cells and hopefully no CLL cells. The T-cell population is also important, as is the CD4:CD8 (helper:cytotoxic T-cell ratio).

Neutrophil count recovery is very important as you note, but you also need to be aware that neutropenia can suddenly develop within the first year after treatment with no symptoms. It's most likely to occur within the first 6 months and more so if you have needed G-CSF (Filgrastim, Neupogen, Neulasta, etc) to boost your neutrophils enough to get through a treatment cycle. So it's good practice to remain vigilant against infection risk for at least a year after finishing your course. Hopefully you can begin to relax now, given youcompleted your FCR over a year ago, though for some, recovery takes longer.

Neil

[Jotame in reply to AussieNeil]

Thanks Aussie Blue Wren(male)

I completed FCR June 2018 and did get Neulasta. I've had a trouble-free year until now. (more about that later...) As for a friend who had FCR as part of trial in Melbourne more than 10 years, she has had 2-3 life-threatening infections some years ago and still struggles for weeks if she picks up a virus. Her case is really the source of my question as I wonder if it will be similar for me.

As for me, my bone marrow factory having a hissy-fit and has stopped producing red-cells. (for the last 5 weeks) Perhaps this is due to contracting Parvovirus (human form) but tests have been unable to confirm. I'm being supported by blood transfusions and if the factory doesnt kick back into action within another 3-4 weeks we'll need to look at treatment options. But this is a separate topic! However with the thought of perhaps contracting such a silly but, for me, destructive virus my next question would be....

WHAT ARE OTHERS DOING TO SUPPORT THEIR IMMUNE SYSTEMS?

[noeagaman in reply to Jotame]

I completed four rounds of FCR about a year and a half ago and my counts are still fairly low. I was getting monthly IVIG's which my doctor just switched to every six weeks saying that I am stable now. I got a few bad infections soon after FCR ended and that was why he put me on IVIG. FCR itself really kicked my butt. After the fourth round it put me in the hospital for a week with dangerously low counts. Then I had to go in every other day for two months and then once a week for another month for platelets and different shots. My doctor said that I turned out to be allergic to one of the FCR drugs. The four rounds did manage to get me into remission though so it was not all bad. My platelets are hovering around 100 now and the doctor said that I may be on IVIG for the rest of my life.

Chris

[Fiona2014 in reply to noeagaman]

Chris, I found your posting somewhat normalizing- as I am currently struggling with FCR treatment. First cycle- experienced profound nausea. Second cycle - skin infections/ rashes due to rituximab injection; impacted bone marrow- FCR postponed for 3 weeks. FCR initiated this past week- sitting here at home with full body "sun burn-like rash". Was seen by CLL specialist and skin specialist- Rituximab will no longer be considered as a treatment option. In terms of FC- Dr. suggests that these chemicals are undermining my bone marrow.

Big question- did 3 cycles of FCR afford me remission status; moreover, what next? I guess next my lab work will guide next treatment options.

Warmest regards!

[Jotame in reply to Fiona2014]

Fiona, Thinking of you! You've had a bad time. I hope things sort out and that you are in remission - you deserve it after that.

Jo

[Fiona2014 in reply to Jotame]

Thanks for your supportive message. I guess my biggest fear is that my body will reject all treatment options- as it appears that my body is rejecting this first intervention.

[Jotame in reply to Fiona2014]

It's certainly scary Fiona! But, look, there are quite few very different options these days. Hang in there, girl!!

Jo

[Fiona2014 in reply to Jotame]

Using mindfulness to push through! Thanks for you positive thoughts.

[noeagaman in reply to Fiona2014]

Hi Fiona, I guess that FCR is not for everyone. I had all the right makers for it, but it turned out to be very bad for me as well. I hope that your next treatment is much easier on you and works wonders for you. I pray that you made it into remission and can hold off on treatment for a while. Hang in there.

Chris

[Fiona2014 in reply to noeagaman]

Like you, I had all the right markers. As such, this course of treatment was reflected in my decision to follow through with FCR. I tend to "roll the dice" in favour of evidence based research (and adhering to the constraints of health agency protocols). Here's hoping that the newer modalities of intervention will be more promising!

Thanks for your support.

[GMa27]

So far doing fine post 1 year FCR.

[cllady01 Former Volunteer]

Jotame, here is the "earlier post on Infection Protection" JigFettler spoke of:

healthunlocked.com/cllsuppo....

[Marie-54]

I am 18 months post FCR. I needed Neupogen to get me through the 5th round and never had the 6th one. I became severely neutropenic about 6 months post FCR and was hospitalized with an infection for 4 days. (Note - I had no idea that the numbers were so low as they had been borderline a month earlier). Guard against any infection. Take your temp morning, noon, supper and night and watch for any rise in temps. If it goes above 38 then hie thee to a doctor ASAP.

Now at 18 months, my bloods have returned to normal and life goes on just fine.

[Jotame]

Thanks for all the helpful comment, everyone! Jo

[holly2]

A bit late joining in this conversation, sorry. I am 2 years, 1 month post FCR having had 5 cycles and one extra of Rituximab (so 6 cycles of that). My lymphocytes remain low and oscillate between 0.4 and 0.6. My neutrophils are not too bad at avg. of 1.6 (about what they were on watch and wait). My Hb is low at about 101. Platelets also low. But my immunoglobin status has been found to be OK and I have some anti body protection.

Responding to a comment made on here to me, I asked my consultant about my CD4 levels. She undertook to have these checked next blood test - November. I have been on Co-Trimoxazole and Aciclovir for 2 years and am keen to come off them!

I have had no bad infections since FCR because I pretty much hibernate during the cold and flu season. I have had a couple of colds but was lucky they have only lasted a couple of weeks each and I managed to get over a mild upper respiratory infection back in June without antibiotics. I really do avoid crowded places and if I think someone looks like they have a cold, I ask them if they have so I can move away!

Fatigue is a problem as they day wears on. Otherwise, I am more or less living a normal life, even though it does not sound much like it!

All the best. Holly.

[Jotame in reply to holly2]

Thanks Holly. Yes, fatigue is whole other topic - insidious, sneaky, tricksey.