Extremely Vulnerable C-19 Letter

It might be down to your personal circumstances.

I was on Dab Tram for over 2.5 years and my blood tests regularly showed low white blood cells. If I was still on the pills I think I would take maximum precautions regardless of the advice and stay home.

Others may have a different response to Dab Tram, with their immune systems continuing as normal, and they may consider themselves less at risk.

I’m at the beginning of immunotherapy treatment now and haven’t been out for over 2 weeks. My wife and 2 children are also in lockdown with me. The only place we go is the garden.

Hi AlfieBulldog, many years ago I worked on a project where the advise was changing all the time as different views and evidence came forward, the last few days has reminded me so much of this. The virus is new, there’s no exact presidencies to pull on, so I’m not surprised there are inconsistencies. A few days ago everyone who had stopped chemo within 3 months were extremely vulnerable, now they are off the list. I think I saw a list with people undergoing current chemotherapy but it didn’t mention immunotherapy now the last list does. I saw a podcast the other day which wasn’t dated so it’s of no use to link as I have no idea how old it is and if it has current thinking, and the Dr contradicted themselves during the 40 minutes on risk to targeted therapy patients and immunotherapy patients between her talk at the start, and answering questions at the end where she thought it was best to err on the side of caution. 

The advantage of having the letter is that it acts as a sort of I have to stay at home letter for employers, the disadvantage is that it advises separate beds and bathrooms not doing the walking out that others can do only going into the garden. I think as social isolation now applies to everyone, I think the shielding between people in the same house isn’t as vital but I am a rule follower, so separate sofas to as we keep 2metres apart in the house. My resolve will be tested during this time as I will miss visiting Pokemon Go gyms and stops, and I would have missed walks at the local RSPB and National Trust if they hadn’t shut them. 

I did read that the letters are produced by computer and may be based on old data, so some people may have the wrong classification. I nearly didn’t get my letter as it went to next door by mistake. It does have some interesting links to the NHS site for emotional support but the Macmillan info links you to the same places.

https://www.macmillan.org.uk/coronavirus

We are a few days in and I am of the opinion the time will go better for me if a plan more, plan meals, freeze ahead, plan activities, exercise, leisure and something meaningful like volunteering here or learning a new skill or reading a new book, and keep in contact with friends. I only wish I had bought some craft things before lockdown, or some paint to decorate indoors, or some plants. I am on a cleaning campaign and hedge and border trimming campaign at the moment, and trying to limit sitting down to much. But I think like lots of people might need some motivational help at times. 

I hope you work out what’s best for you and your family.

Thanks for your replies Tarilan and KTatHome Some very interesting points in both posts

Hi KTatHome,

You can buy everything like paint, hobby gear/ items books, online via eBay or Amazon.  Plants too.  The only limit is your debit card balance!  Its bad enough being cooped up indoors without being bored aswell.  So order everything and have some fun!

Later

J

Hi,

I can understand your confusion as I know several patients who are on Dab/Tram - some have received letters whilst others haven't. An underlying theme appears to be that some of those who have received the letters have previously been on immunotherapy so that's the reason for the letter. 

All Melanoma consultants have a differing idea as to the answer which doesn't help I'm afraid. The best advice I've seen is on the Melanoma Focus website (a research charity comprising of clinicians) - Point 7 partially answers your question but still isn't very helpful. https://www.gov.uk/government/news/major-new-measures-to-protect-people-at-highest-risk-from-coronavirus

If you haven't received a text or letter by the 29th March (last date for them to be sent) I suggest you go to the gov.uk website where there is a provision to register as a possible At Risk patient which is what some Dab/Tram & Eco/Bini patients have done.

Good luck & stay well,

Hi and thank you so much for taking the time to reply. Don’t get me wrong I am in no way saying that I want to be isolated/ shielded for 12 weeks if I do not have to be but if the Dab/Tram increases my risk then I would rather know. I too have been on immunotherapy in the past so further confusion as to why those patients have received a letter and my consultant says I am at no greater risk than someone who doesn’t have cancer. As others have stated it may be due to my blood test results and my white blood cell count being good...I simply do not know. As always I guess I need to put 100% trust in the advice given by my consultant and take every precaution I can to ensure both myself and my family stay safe through these unprecedented times. I think the long / short of all of this is nobody really knows, some are taking the belt & braces approach and some don’t have a belt or braces and are adopting the wait and see approach.

Stay safe.