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CLL Support Association
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wobbily moments??

As some of you will know, because you have kindly supported and responded to me and my queries........ more............. my husband has now overcome shingles,(except for one 6mm lesion which has remained intact for over two weeks and a biopsy will be carried out next week). he will re-start ibrutinib tomorrow but at a lower dose, (two tbs per day instead of 3). he will take Aciclovir 400 mg x 2 per day day.(having just completed 5 per day for 7 days) GCSF twice per week.(having already completed 1 per day for 7 days raising his neutrophils from 0.2 to 3.6). His next ivig will be next Monday (as per usual every 28 days).

he had a fbc today and his platelets are 67.... we have never been involved with blood figures, thinking there is nothing we can do to alter them.. (ostrich attitude) ..... he has felt totally unwell for the last 7-10 days ( shingles also during this time), he is extremely lethargic, withdrawn, he looks as though he is on the brink of falling over at any time. even the hospital staff commented on his demise today.He doesn't complain....... perhaps he should see the medics without my being present..... he might then tell them how it really is. I find this a very difficult place to be....... a totally unknown drug here in the U.K. There is something obviously wrong with my husband and I do not know what the problem is.I should also point out though...... he takes nebulised colomycin twice per day for haemophylus influenza following lung surgery to remove clots, the influenza is in lung scar tissue, so he has a permanent cough which he finds very debilitating....... other than that............. TIZ a wonderful world and we are very grateful to all the people who help and support us, including our new pals at Healthunlocked.

5 Replies

Where was the shingles reactivation?... sounds like Ramsay-Hunt Syndrome which can have lingering vertigo and dizziness...just my guess...

More here... ramsayhunt.org/info/prognosis

I had trigeminal V2 shingles and I still have a wobble... long after.

I hope you get to the bottom of this...




Others on the site will no doubt respond as has Chris, with any technical advice and to share their own experience. I just wanted to say how much I admire your resiliance and strength as you support your husband. The role of carer carries so much concern, so much frustration at not being able to help him.

So much heartache. I hope you too, have people around supporting you.

Very best wishes, stay strong.



thankyou very much........I appreciate your reply. my husband has had horrendous problems over the last 8 years, sadly we also lost our only son-in-law to cancer and our daughter is just recovering from breast cancer. The total frustration just now is we can't go visit her (220 miles away) because we spend so much time in hospitals and I am also nervous about being away from the "Ibrutinib" hospital, if you know what I mean. ....... BUT whenever I go to a hospital I always see somebody looking so poorly and count my blessings. manyh thanks hw


Those of us with CLL would have a far more difficult time without the varied support and care given to us by family members. Just be sure to have some 'time out' yourself.


Hi all I can tell you is that when I went through treatment(chemo) I could not have done it without the love and support of my husband. Good Luck


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