Still no treatment (UK)

[Hm15]

Hi Everyone

In my last post I thought my partner was about to start treatment, but after a 10 minute consultation at Kings he was told he seems to be managing without ( despite meeting the criteria for treatment) and the next appointment was put out 5 months. Since then his blood results have arrived, Hemoglobin fallen to 10 and he has succumbed to shingles which is very painful and at 5 weeks and counting. He has always been underweight and fit but finds exercise (pre shingles) makes him breathless. Apart from the shingles, his immune system is clearly under pressure as he has had a constant cold since November.

Do you all think he should be asking for an earlier appointment? It seems we are watching and waiting until he gets really ill. As I mentioned before, the flair trial is what he will go into when treatment starts.

Also is there any hope that eventually after treatment his immune system will recover?

Thanks so much for your thoughts.

HM

[Cllcanada Top Poster CURE Hero]

Is he seeing his general doctor/consultant? Is he on antivirals?

I think if it were me I would move up his appointment, certainly. It would be a good idea to have the current situation assessed, by a CLL specialist.

Immune system recover largely depends on which arm of the FLAIR trial he is assigned to... In FCR, the T cells can be suppressed for over a year after treatment, Imbruvica (ibrutinib) is looking to have an immune system partial repair modulation effect, but it is still too early to know, to what extend.

Overall, CLL patients never get a completely functional immune system but immunoglobulin can aid and keep this a bit more normal.

Please keep us informed...

~chris 🇨🇦

[Hm15 in reply to Cllcanada]

Thanks Chris. He has seen the GP for the shingles and did a 1 week course of antivirals . At Kings it’s a hemotologist rather than a cll expert although they all see a lot of people with cll. Trouble is it’s a bit of a factory! I might see if we can pull forward the appointment and insist on one of the cll guys.

[Cllcanada Top Poster CURE Hero in reply to Hm15]

I agree, very much an assembly line, but it is that way in most places...

Might try for this doctor, he was at Kings... Dr. P. Patten, renown CLL clinical researcher in CLL

guysandstthomas.nhs.uk/our-...

[mrsjsmith in reply to Hm15]

Hi was that you husbands first appointment at Kings ? Usually new patients are seen by the person in charge. I saw Prof Devereax when I started at Kings. Sadly now retired.

Dr Patten does ( I believe ) a Wednesday afternoon clinic. I am happy with the consultant I see but I was told if I wanted to specify seeing him it was best to email his secretary. Reception should be able to give you her details.

Regards

Colette

[Hidden]

Ask for an earlier appointment. Usually in the U.K. they treat when the HB is below 10 for a period of time but above 9. For me that was 9 months.

Breathlessness on walking and exercise, for me, increased as my HB fell. Hills defeated me yet I was quite happy walking on the flat and around the house.

After FCR and doing well I still get breathless after a cold and cough infection until my strength comes back.

Never worry about a symptom always make a phone call for an appointment or a chat with the Haematology clinical nurse. The nurse would get you to investigation or consultant quicker.

[Senecio]

I wouldn't like to advise you on whether to start treatment - although the information in your post does seem to suggest that treatment should be started sooner rather than later. I am commenting on this:

"Also is there any hope that eventually after treatment his immune system will recover? "

I had (FLAIR) FCR finishing in the autumn of 2017. In the run up to treatment, I was getting colds, some quite severe, several times a year. Since January 2018 I have had virtually none. Twice I have gone to bed feeling as if I have a bit of a cold, only to wake up next morning with no sign of it! My neutrophils have been fine, and lymphocytes remain low. HB and red cells are normal. Side effects have been minor. (a couple of food intolerances). So there is reason to be optimistic that your partner's immune system will return to close to normal.

John

[Redlion]

From what you describe I am surprised the next followup is at 5 months, I would have thought 2 or 3 months was more appropriate given the circumstances. Has a FISH test been done yet to determine the genetic profile of his CLL, because the results of this will determine the type of treatment path available, and the increasing symptomatic nature of his CLL would indicate the approach of treatment. You are entitled to be referred to a CLL specialist for a second opinion and if it was me that is what I would be doing. Unfortunately there are haematologists who believe in delaying treatment for as long as possible despite the problems caused by the increasingly symptomatic nature of the disease and the effects that has on quality of life. If you meet the treatment criteria then it should be you that decides if you want to cross the treatment bridge. Good luck.