An answer at long last.....

[Susiecarer]

Evening everyone.....

Well NO OPERATION tomorrow.....taken into the Churchill and has been diagnosed with Evans Syndrome......which is another part of CLL !!! staying in until Thursday or Friday. Had one dose of steroids intravenously.....tomorrow I believe it will be via oral.......they want to see if the steroids build his HB levels as well as platelets.

Bloods were 5.6 and his platelets were 75....... will be on steroids for up to 12 weeks, but until his HB is stable and all the others have risen they will hold back on his op.

They still may give him bloods if the steroids are not acting quick enough......must say I lost it up there, I was so scared, but Dr Simmons (haematology) was prepared to listen especially when I told him about losing our son 12 years ago to Testicular Cancer .......

He made me feel very calm once he explained what was going on. It also looks like treatment is on the cards in the near future but not until the stoma is reversed !!!!!!

I will keep you all informed about progress etc.

Take care

Susiecarer

[PaulaS Volunteer]

Hi Susiecarer,

Thanks for the update. But what an roller coaster you’re on! So many complications and ups and downs.

At least you’ve now got an explanation for your husband’s continual low Hb and he’s having appropriate treatment. But I can understand how you lost it up there. It must be so very emotionally draining… I’m so glad the haematologist listened to your fears and helped you to feel more calm.

Thinking of you, and hoping things will be much smoother for you both in future

Best wishes,

Paula

[cllady01 Former Volunteer]

Susie, thank you for sharing even in the midst of the chaotic search for just what was happening. I appreciate your relating the caring of the Dr. also. It sounds like there is now a solid plan for moving forward.

Best wishes to both you and your husband as you continue to monitor and hope for the best. I had never heard of ES, but found an article in Blood Journal published in 2009.

So much to learn about as we stumble along with CLL.

Again, thinking of you both as you keep at the task.

[DMary]

Oh dear. We just never know what to expect. I'm so glad that you had a thoughtful and caring doctor to walk you through it. Hang in there, we all appreciate our carers so much!

[Bubnojay]

Hi Susiecarer

Oh no wonder you lost it, we can only take so much and caring and loving our partners sometimes seems harder than having the illness ourselves.

The total reliance on others to help while we can only comfort and watch uselessly is enough to make a saint weep.

I am so relieved that hard though this latest diagnosis is, you now know what is happening and that your doctor took the time to talk you through it and what treatment is being given.

While hubby is in the hospital try to get plenty of sleep and have a few treats to build yourself up you need looking after as much as he does after all you have both been through.

Wishing that hubby improves and is able to have his op, sending you positive thoughts and lots of cyber hugs 🤗

Bubnjay1

[Bethan49]

I can so sense your anxiety sending you love and prayers x

[Quarry]

Thinking of you - you are going through the mill.....

I have never heard of Evans Syndrome - is it CLL linked or something separate?

[Jm954 Administrator in reply to Quarry]

Evans is a very rare autoimmune syndrome where red cells, granulocytes and platelets are destroyed by antibodies that can rarely, be a complication of CLL. Idiopathic instances of Evans Syndrome are treated in the same way but have a pattern of remitting and relapsing.

Here are a few links with more information

rarediseases.org/rare-disea...

ncbi.nlm.nih.gov/pmc/articl...

[Susiecarer in reply to Quarry]

Yes Quarry, this condition is all part of the CLL .

Susiecarer

[Jm954 Administrator]

Well, your husband doesn't do things by halves does he but what journey you've both been on!

Evans Syndrome is very rare and, given your husband's history of anaemia, it's not the first thing they would think of. Hopefully the steroids will make his wbc, Hb and platelets all bounce back pretty quickly and he can get his stoma reversed.

Sounds like you've got a good team listening and looking after you both at Churchill which is a blessing and must give you some comfort.

Take care and best wishes to you both

Jackie x

[Jm954 Administrator in reply to Jm954]

One last thought Susiecarer. When your husband is through this patch then please ask for his CLL genetics and p53 etc to be done, if it hasn't already. There is a higher incidence in patients who have Evans syndrome and his genetics will inform his future treatment pathway.

Prayers as always.

[Susiecarer in reply to Jm954]

Oh thanks for that Jackie, I have made a note in my diary.

He had the first steroids orally this morning and was not impressed with the taste.....!!!!! MEN !!!!!

[LynnB1947]

Thanks for your update. You gave me something new to read up on ... Evans Syndrome. Praying for positive results from treatment.