Covid 19 sharing texts and letters

I got mine this evening, 15 months in remission for burkits, treatment was da-epoch-r, I thought that I would have been clear based on the 3 months after finishing treatment, 

I got the text last evening. I finished treatment a year ago and am back on watch and wait for follicular lymphoma. Also have a primary immunodeficiency.

Got mine last night. No treatment and on watch and wait for two years

No Text (yet) but I dont actually know what North of the Border is doing.

Diagnosed in 1999 with Skin NHL. I am now over 4 1/2 years post my last treatment (2 Allo SCTs) and 3 1/2 years in remission.

I had a phone clinic with my Late Effect Nurse last week and she was not sure how people were being contacted but wanted to give me a heads up.

 “……you need to think that you have just come through all your treatment again and take exactly the same precautions as you did then........”   so I am basically back into a three+ months isolation controlling everyone I come in contract with and where and what I do.

She also said ”……. once a blood cancer patient always a blood cancer patient"......... "All the treatment you have had has indeed had a long lasting effect on the effectiveness of your immune system even although your bloods are ok with a few at the lower limit range of acceptable, like any virus you are at risk but this one we don’t know how a post treatment patient will react - let’s be safe and not sorry”

Hiya.... thank you for sharing this.

What did it say? I was diagnosed with nhl following routine bloods Jan.20 & have lymphocyte count of 15.1.  I don’t know if that’s high or not? I’m on a/l this week & was told by my lead at work that the nhs will find me a job that’s not front line.  Occupational Health have advised I should work from home. I feel in limbo. I feel generally well, but when I get a virus 99% of time it goes to my lungs & I need an inhaler  that is the only medication I have needed as required.

Its so strange to have a diagnosis of blood cancer, to be on watch & wait & now am I risk with Covid?

I haven’t told family yet only a handful of people as I was awaiting my 2nd consultants appt & I’m getting my head around understanding the condition myself.

Any advice is appreciated.

Hi  first welcome to our little corner of the Community - yes it hard getting your head round this.

First, what type of NHL have you been diagnosed with?

Second, you may have to say something to family in the house (not that we can mix with others now) to ensure that ALL precautions are taken so you don't get infections.

If Occupational Health are saying work from home then they have Risk Assessed your position as you are seen as "Extremely Vulnerable" 

I never understand the Lymphocyte numbers. I had all my bloods done a few weeks back and my Lymphocyte count was 2.6 and the normal range is 1.0 - 3.0 so I would guess that you are 1.51 and that is in the middle of normal range but I am no expert.

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Keep well and ((HUGS)) from a distance.

NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.

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Awwh THANKYOU! Much Appreciated as feeling anxious.  I know 1-4 lymph count is normal - but mine is 15.1 that may mean high, I really don’t know in terms of numbers - any help to under would be great  J 

Thanks for this Jane Joncol x

Hi J so your count may well be high and this is often a sign that your body is dealing with an infection or as you have been diagnosed with a type of NHL you immune system is working harder to fight it.

What of the 80 types of NHL god you have?