In remission after FCR treatment for CLL 7yrs ago. Should I be shielding because of Covid? I did not have a letter from my GP. I am 63yrs.

[Jessian2]

Now in a household with 2 frontline health workers.

[Hidden]

This is so tricky as many opinions on what to do. At my 6 monthly phone check up I was told I was vulnerable but not clinically at the highest risk. I’m 4 1/2 years post FCR with very normal stable bloods. The highest risk I’m told is when you are still having treatment . I wouldn’t want to catch COVID19 and take measures to guard but still have a life.

7years remission brilliant.

[JigFettler Volunteer]

Yes you should!

Nowhere have I heard that CLLers can assume they have regained normal immunity status, irrespective of W&W or treatment. Its not just the cell numbers that matter - its how the immune cells "talk and dance" with each other.

I had a few discussions with my Haematology Team about the merit of checking immunoglobulin levels, T cells populations etc. So far my request for testing have been turned down for the reason that no prognostic statement may be made from the results.

If anyone know otherwise - I would be eager to know.

Importantly:

Congratulations on 7y post FCR, and great milestone, bodes well for an enduring remission. I am just 2 years post FCR, with very low L count still.

Stay safe!

Jig

[holly2 in reply to JigFettler]

Hello Jig, because my lymphocyte count stayed so low, I asked my consultant about the CD4 count to look at T cells. I was fortunate that she checked this and continues to do so as I am armed with the knowledge mine are very low. It might be worth asking for yours to be checked too. Holly

[JigFettler Volunteer in reply to holly2]

Hi There! Yeh!

I did ask for them to be checked - in fact I was seeking to have serial checks done - BUT, it was declined me on the NHS. Privately - no idea re cost - just was practically no possible either.

Additionally - I was not having infection. So despite known low Immunoglobulins - I dont get ivIgs either. Given that I am mercifully lacking in infections this must testify I have retained some viable immunity. BUT, which bit of the immune system is protecting me I dont know. In fact my wife has had 6 respiratory infections in the last 5 years since my CLL diag - and I have yet not caught anything - remains a curiosity to me.

I see you are UK based! So... are you in in a Teaching Hospital? (I am not...) I am wondering how you succeeded in getting your CD4 count. AND, what did your Consultant say about your low result?

Best wishes

Jig

[holly2 in reply to JigFettler]

I think I am lucky with my consultant and always hold out to see her even when they try to get me to see the next available consultant as they work as a team. I always ask loads of questions and she says she enjoys my visits because I challenge her and keep her on her toes! I also asked her to check my general immunity to things like measles and I found I had some immunity to measles, glandular fever and chickenpox from the tests she organised for me.

I did complain about the fact my experience of FCR has been so difficult with poor blood results and that I had been given too many rounds of the treatment. A review was carried out which of course led to nothing in particular!

There are no CLL specialists at my hospital and my consultant is a general haematologist but her help and support responding to my questions and requests has been really great.

This forum and being knowledgeable about my own condition has been the best way to be my own advocate and not to accept what I am told. However, if I had your consultant my approach might not work either!!! All the best, Holly

[JigFettler Volunteer in reply to holly2]

Hi!

Thats interesting! Do you think that you ask more questions BECAUSE your consultant is a non CLL specialist? I do believe we as CLL sufferers, with our looooong CLL journeys could be trained to be the best patients for our own good. Like well trained Drs! A CLL Academy!

The other important point you raise - is the checking for immunity to these other important diseases. This does not seem to be standard practice. I had my Pneumococcal immunity checked - after having both vaccines. The result was equivocal, so I had a 3rd pneumovacc jab. BUT immunity not tested after that! I was going to follow this up - but then Covid hit!

I would ask whether we all should have our immunity checked to all the standard diseases routinely? And that we should have responses to immunisation checked too, always...

This maybe a question for a conference. It would cost a lot. But then infection is a major source of morbidity and mortality for us CLLers. Never mind the additional effects of FCR!!

You got me thinking! Thats good!

Jig

[GMa27]

Wow 7 years! I am 2 years post FCR.

I live in USA. I wear my mask when out to stores and do not socialize indoors. I spend most days at my boat or by my pool/beach away from people. Occasional visit with my toddler cousins who do not go to preschool. I spent the first 3 months at home while my husband did all the shopping. By June I started catching up on all my doctor appts including way overdue dental cleaning by August. So far so good.

I think people need to do what they feel is best. I am very conservative compared to many I know. As you said you live with frontline workers (thanx to them for their dedication) so you basically live with risk everyday whether you are home or not. Maybe you can find a compromise and get out a bit. 🙏💕

[holly2]

As I understand it, all blood cancer patients are considered to be clinically very vulnerable (in the UK). I am 3 years post FCR but don't have a good immune system following it as I am very short of T cells.

It is very difficult for you living with others who are at the thick of it.

Depending on your particular blood results, and with the advice of your consultant (do contact them if you have not seen them for a while), sensible precautions are really advisable.

Best wishes,

Holly

[lankisterguy Volunteer]

Hi Jessian2,

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Here is a 2008 quote from Dr. Terry Hamblin’s blog on immunodeficiency

( he was one of the UKs foremost experts on CLL)

mutated-unmuated.blogspot.c...

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Even today, the CLL experts admit that there are few useful ways to measure how much or how little CLL has affected our immune systems. Your past history of infections- bacterial, viral & fungal, - may be the only indicator of your level of risk.

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Developing methods with your housemates to limit the risks of them "sharing" the virus with you would seem to makes sense.

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Len

[SofiaDeo]

Considering the covid virus has caused severe disease in just about any demographic group we can name, it would be prudent to minimize risk the best we can. After my diagnosis 9 years ago, I started a modified social distancing, wore masks during flu season (now always when in public) and invested in air sanitizers/purifiers and humidifiers (relative humidity here runs 10-15% average). I have had very few, mild, respiratory problems but covid is another thing entirely! We stopped mouth kissing (kiss necks instead), turn our faces away when hugging, and are scrupulous about not using each others drinking glasses, etc. We even have separate toothpaste tubes. I glove up/sanitize in public, use my elbow to press door plates, and use a knuckle or flat palm instead of fingertips when I can. Outdoor clothing, including shoes, is left at/near entryway. Minimizing risk without living in fear is all we can do!

[Big_Dee]

Hello Jessian2

Yes you should take all CV-19 precautions. CLL is called a blood cancer, but it is also a cancer of the immune system. My wife is a frontline health worker as well. She does the whole retinue of putting cloths in washer and shower when she comes home. She washes hands, uses sanitizer and wears masks when out and about like I do. Blessings.