Covid19 and cll

I'm 53 and healthy. I’m on Ibrutinib (since March 2017, Chemo back in 2012 and came out of remission in late 2016) and have good control of my CLL.  My consultant personally rang me to say I’m in the at-risk group and should stay at home for the 12-week period.

Thank you... I got diagnosed 3 years ago, and never had any treatment, only on a watch and wait, so not sure if that makes a difference... 

If diagnosed with CLL your immune system is now no longer fully functional.

Thus you ARE at risk, so you should follow all the recommendations

Your heamatologist / oncologist will know you specific blood counts and will have input on the NHS letter we are likely to receive.

Dick

I believe annexe 3 of the document confirms that we do and it should be for 12 weeks. You should receive an official letter in the next day or two confirming the advice.

Hi Folks yes, this is all very confusing and I would always recommend talking with your team (if you can) as every blood cancer case is individual and the following information may well be out of date, but from your information he/she/you may well be in a high at risk category.

This Information from the government is all encompassing and is a good guide what to look out for and what you should or should not do and Macmillan have also provided some information and answered some key questions around cancer and coronavirus (COVID-19). This link takes you to the most up to date Bloodwise information about the Coronavirus.

This is also on the Government information "If you're at high risk, you will be contacted by the NHS by Sunday 29 March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted."

I was diagnosed in 1999 with a rare type of Skin NHL. I am now over 4 1/2 years post my last treatment and 3 1/2 years in remission. Just a few weeks back my team said   “……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”

I am not expecting a letter but still fall into the 'at risk group'.

This may not be much help for you - sorry..... but this virus can not be underestimated.

((Hugs)) from a distance.

Have any of you received a letter or text from the NHS yet? 

Yes I received a text message at 8 pm last evening and have had three more since then.

These are very simple reminders of what to do and how to stay at home for 12 weeks.

They are not written by either my GP or my oncologist, and so they really do not tell us much.

I am told that we should receive a letter before Sunday this week, which might perhaps be more specific as to our own actual medical conditions.

Stay healthy, and take care.

Dick

I've still not received anything but I am assuming that whatever stage you're at (I'm also just watch and wait) anyone with CLL will be receiving a letter? 

I would presume this.  The letters will doubtless go to anyone who has had an appointment with their haematologist / oncologist at the hospital.

Dick

Unless you hear differently you may need to see yourself in the 12 week Extremely Vulnerable Shielding Group.

Taken from the Governments info above

What do we mean by extremely vulnerable?

People falling into this extremely vulnerable group include:

1. Solid organ transplant recipients.

2. People with specific cancers:
   • people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
   • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment

Watch and Wait is seen as treatment as you are being monitored for progression of a condition you already have.