Hare and Tortoise: AIHA and CLL

[Quarry]

Well, did not get the best news yesterday. Was feeling like someone had taken plug out of me, so got bloods taken on tues and somehow got into clinic yesterday. I have now been off steroids for AIHA for 4 weeks: they worked so well when I was on them and 66% of the time they work long term. Hb levels returned to normal and I was feeling great. CLL remains almost dormant, tortoise-like: lots of time to understand CLL!

No surprise, my Hb is around 10 (from 15 only 4 weeks ago). My reticulocytes (baby red cells) are at levels I have not seen (over 7: previous high (pre steroids) was 5 and normal 0.5-2.5), so despite the bone marrow going into massive over-production of red cells, the overall drop is massive very alarming. My spleen has embarked on a blitzkrieg of unexpected proportions against the red cells: a super-charged, crazed hare.

By the way, I notice on my blood sample bag, that the components to be tested include the specific word 'retic' (ie over and above FBC), so the docs do have to ask for reticulocytes specifically. However it is a key measure bone marrow health (ie if it drops off, the CLL is starting to effect bone marrow) and also very important in AIHA - so worth talking to your docs about adding this to your blood measures.

So onto the next AIHA treatment: I fear my path of AIHA makes CLL look common. Docs are firmly recommending jumping the two further treatment options (retuximab and then ciclosporan) and going straight to removing the spleen: I am young and can cope and it leaves the other treatments as back-ups. However, spleen removal only has a 30% to 50% chance of stopping AIHA (a huge range, I guess due to different cohorts) - can anyone lay their hands on any research on this? Also back on steroids as emergency measure.

I did dare ask the question as to 'what if none of the treatments work?'......answer is regular (poss every week) blood transfusions to keep the Hb up, but this does bring other complications (beyond inconvenience): principally too much iron going round the body (body does not get rid of iron, which is in each red cell), which leads to heart problems and more: however, that will be the least of my problems if I follow that path.

I am just hoping this AIHA hare needs a long kip, to allow the 'nice cuddly CLL' tortoise to catch up in 40 years!

[AussieNeil Partner Administrator]

Hi Quarry,

I'm sorry to hear of your discouraging news. Thanks for thinking of the rest of us too with your advice about the reticulocytes testing and AIHA.

I can't direct you to any research on spleen removal research but I suspect Dr Brian Koffman might be able to help you there if you send him (bkoffman) a PM.

If it comes to you needing regular transfusions (and that's a long way off yet if ever), I'm sure you'll be monitored for iron build up and there is treatment for it too - Iron Chelation Therapy. Check out:

aamds.org/node/114

I hope you have some better news soon,

Neil

[Quarry in reply to AussieNeil]

Neil

Thanks for advice - surprised myself and have (I think) managed to send Brian a message via the site.

Will store iron information for when (or hopefully not) it is needed....as you say I hope it does not get that far.

Andy

[Hidden]

Hi Andy

just to add my best wishes too, that things will improve for you,

Bub

[Quarry in reply to Hidden]

Thank you.

Now found out spleen removal, whilst not hugely great odds on success, does have a big upside.....if it is successful, there is a chance it will solve problem for good: all drugs solutions (if they work after end of regime) at best solve problem for a few years.

[Berrytog]

Hi

I am not sure whether you are being treated for CLL at the moment. I , after eight years of watch and wait , developed AIHA and had chronic fatigue and was treated with steroids and transfusion to bring my levels up before treatment( Ibrutinib) and my consultant said it was due tomy progression and a sign that I needed treatment but it would go with the start of my treatment, so far so good.

[Quarry in reply to Berrytog]

Berrytog

Glad to hear all going well. My CLL is very much W&W, no signs of increasing in activity so no treatment of even signs of need for. It has just kicked off the AIHA, which in retrospect is probably the thing thing that was my problem that took me to docs who then also found CLL.....

[AussieNeil Partner Administrator]

Hi Quarry,

Something to file away should you end up having a splenectomy; you should make certain that you are up to date on additional vaccinations. I found this out when asking my haematologist about the advisability of having a Menitorix vaccination (HIB and MenC) coverage. Seems this is only necessary if you've had your spleen removed. It is actually covered in the Wikipedia pages!

en.wikipedia.org/wiki/Splen...

Neil

[Quarry in reply to AussieNeil]

Neil

Thanks for this. Had good haemo consultation last thurs and it is best alternative for me at this time....though I am into medical 'case law' or 'art' and way off homogeneous cohort-based science. The 30% to 50% 'official' chance of working is distorted by (older) patients with more complications than I have (as so few cases overall, we are all lumped together in 'stats') .....so I have been given a feel of an 80% chance working, which feels ok. And as my spleen is really the only place the (pretty dormant) CLL is, it should help with CLL too.....

I was aware of the HIB and pneumonia, but need to check Men C. I will need penicillin for life after op. Now trying to get to see surgeon, which is another fun and games!

Amazing what wiki has......

[AussieNeil Partner Administrator]

Quarry,

Today's CLL ACOR List has several posts of member's experiences with splenectomies. PM me if you don't already have access or know how to gain it.

Neil

[Quarry in reply to AussieNeil]

Neil

Please do let me know how to gain access to the ACOR list - I have not heard of this before, but sounds a good thing. Also not sure what PM is/how to do it?!

[AussieNeil Partner Administrator]

Quarry,

You can sign up for an email of postings to the CLL ACOR list here:

listserv.acor.org/scripts/w...

(This link is already mentioned in the post of international CLL information resources)

healthunlocked.com/cllsuppo...

The link below should take you right to the Spenectomy posts from this month, which includes a good one by Brian Koffman (saves you joining to get them)

listserv.acor.org/scripts/w...

PM = Personal Message; it's a way of communicating with other members of this community without having to disclose your email address.

How to send a Private Message from this site's Help page:

support.healthunlocked.com/...

Neil

[Quarry in reply to AussieNeil]

Neil

Many thanks - will follow up.

Also just read an article in the 44o Italian conference around AIHA / treatments following patients over many years: turns out there are two generic AIHA types.....'warm' (where splenectomy does have up to 80% effectiveness) and 'cold' (where in 2 cases it did not work). So, thinking about last discussion with haematologist, I must have the warm type (as helpfully explained on...... wiki): but will check at next visit.

Andy

[AussieNeil Partner Administrator in reply to Quarry]

That's great Andy. It's really good when the pieces fall into place just when you need that to happen. It must be very reassuring to know that you should have a good chance of the splenectomy working - should it comes to that and from two independent sources too. This is much of what this site is about - filling in the gaps where we can.

Neil

[MsLockYourPosts Passed Volunteer]

I hope you were able to access the ACOR discussion. If not let us know and one of us can send a PM with the information.

[Quarry in reply to MsLockYourPosts]

Thank you for offer of help - I have managed to get access, but the site takes some getting around....!