My GP just said something about CLL and Covid - CLL Support

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My GP just said something about CLL and Covid

Harvist profile image
12 Replies

Just been to see my GP who I have known professionally and personally for over 30 years. Minor surgery on my big toe!

He was the one who diagnosed my CLL 11 years ago. In passing I told him how strict I am being about masks, distance and keeping away from kids especially. Basically continuing to shield for the long term.

He pointed out I'd never had any infections and was still on W & W. Prefacing his words with "I'm not a specialist on this but,,," he told me that my immune system should still be in pretty good working order.

He also said no-one knows anything for certain about particular medical groups but the data was coming in and we should have a pretty good picture over the next few months. Keep shielding but be a little hopeful.

For me, this was the best news I'd had for months.

Anyone else been given any hope by their GP's?

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Harvist profile image
Harvist
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12 Replies
Sushibruno profile image
Sushibruno

Very encouraging, thank you.

sun_flower profile image
sun_flower

Wow how lovely to hear this fingers crossed although ĺ am still very anxious and careful ,l got some covid lateral tests today for peace of mind l put them away and hope l never have to use them , thankyou x

neurodervish profile image
neurodervish

Not to rain on any parades, but I hope your GP put the conversation into context by sharing data about your latest ALC numbers, an antibody test, plus an immunoglobulin test.

There is already significant data coming out that CLL patients have less immunity with the Covid vaccines.

I absolutely agree that being hopeful is important. As Teddy Roosevelt famously said, "Walk softly, but carry a big face mask."😀

Harvist profile image
Harvist in reply toneurodervish

Agreed but I think the general feeling about antibody tests is not as definite as you suggest. Also hard to assess the data (and this was mentioned) because we are amongst the most shielding group and therefore least likely to "bump into" the virus.

neurodervish profile image
neurodervish in reply toHarvist

Hi Harvist , I completely agree about the testing. I really just hope that your conversation was put into the context of your overall lab numbers and health profile. I am embarrassed to admit that, until a few weeks ago, I was among the uninformed about the Covid vax not having much affect on CLLers. 😬 (I was busy having a CLL vacation, but you can bet I'm shielding NOW )

How lovely to have a GP for 30 years! I'm a little jealous. Every time my health insurance gets switched around, I have to shop for a new GP and begin the CLL talk anew. I've yet to meet one who knew specifics about it. 😕

Stay safe and have a great day!

bennevisplace profile image
bennevisplace

It's good to hear of a GP who knows his patient and bases his professional opinion on what he sees and knows about the person in front of him, not just on the "average case" or "current research". Keep shielding but be hopeful seems to me the right message to take away.

ChristyAnne_UK profile image
ChristyAnne_UK

That sounds very encouraging. Personally, I will stay ‘hopeful’, but guard against ‘wishful thinking’. Being in W&W is no guarantee of safety from the vaccines. I am sure I’ve seen more than one negative antibody test report in this forum from our fellow Waiters. So… hopeful but not taking anything for granted. Still shielding. Take care. Stay safe. x

Big_Dee profile image
Big_Dee

Hello Harvist

My GP who I had seen for 15 years, also diagnosed my CLL. He told me something I have not forgotten, "90% of dealing with CLL is a positive attitude". My GP has moved away so I don't see him anymore. My WBC went from 11K to 197K in 14 months, but now post treatment has only increased 1K in 3 years and stable. My CLL Specialist said I may never need additional treatment. :) I almost forgot to mention that I have not had any infection or hospitalization since before treatment.

wroxham-gb profile image
wroxham-gb in reply toBig_Dee

Great news.Sue

No, as I usually know more about CLL than my GP! Refreshing that you have someone engaged. I would not put much stock in their comments though and keep to your specialist/hematologist for guidance as far as Covid goes.

Harvist profile image
Harvist in reply to

I haven't "seen" my hematologist since Octoner 2019. Telephone conversations only and covid advice has been scant to say the least.

kathymac5252 profile image
kathymac5252

Our GP and nurse practioners don't know enough about CLL to give good advice...(not their speciality)

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