Checking up on everyone

Hi, hope you are all well? 

Has any one had extensions to their shield dates? I heard somewhere that new dates were going out to people, I am 6 months post SCT end of June and that seems to be the cut off for extremely vulnerable shielding. 

Thanks all. 

Hi Brew,

Good to hear from you and hope you are doing well. I think the shielding guidance is going to depend on your specific cancer. Unfortunately for myeloma patients, the guidance is currently permanent, regardless of length of time from SCT. Which is a slightly depressing thought so I’m really hoping the shielding guidance will be relaxed soon!

I have put a link in to the latest bloodwise advice on this, I think it is generally speaking up to one year for auto and two years for allo, but if in any doubt, definitely best to chat it through with your medical teams as they’ll be able to advise on your specific situation.

Hope you are keeping well - we will get there in the end!

Greg

bloodcancer.org.uk/.../

Hi , up North of the border I was told very early in the process that we will most likely be in the last group of people who will be officially released from the shielding title and the 12 weeks was the ‘starting’ point so I am in this for the long game.

But even although I am now 4 1/2 years post my second Allo SCT my team have been very clear that until there is a vaccine I can get!!!!! or a very her percentage of the population have had a vaccine I will always be at risk..... but this is the same with me not being able to have the MMR so always at risk but it does not make a big difference as to what I can do.

Hey guys,

2 years post Allo seems a bit extreme, think I might go mad. Not sure how they expect people to get that much time off work either. I’m fortunate at the moment as I’ve been furloughed for the 12 weeks but after that I’m not sure what will happen. A lot of people are going to be trapped in between returning to work or running out of money and it’s an horrible situation we are in. 
Hopefully soon they will come up with a test to see just how many people have had it. I spoke with my endocrine consultant a couple of weeks back and he had just returned to work following 3 weeks being quite ill after testing positive. He said that everyone else in his house tested positive too but no one else has had even mild symptoms. It’s a strange virus and unfortunately we don’t yet know enough about it to make informed decisions. 
I take hydrocortisone daily because of the issues with my pituitary gland and was initially told that this put meat an increased risk as they act as an immunosuppressant but I received a letter this week saying if I catch the virus I should up my daily dose from 10/5/5 to 20/20/20/20 daily. It’s all confusing. 
Anyway, have a good weekend guys.

Regards

Mark

Hi all,

Mark, it appears that latest info means that steroids can stop your immune system from creating a cytokine storm which is what can kill, they are learning more about the virus all the time. However the typical NHS rules mean that the latest information doesn’t always get into the regular rule books till much later in the game, sadly! 

daughter is ok, thankfully, working from home as is her housemate, though both are getting rather stir crazy, but have access to some deserted areas around them that occasionally they drive out to and do some outdoor exercise; also it helps their puppy to have a run! Otherwise all is well, and she is managing her I/gs ok at home.

Hugs xxx

Thanks people, I was going by gov.co.uk guidance on the extremely vulnerable section it says that anyone with SCT within 6months, so in theory that's me out in June. Which also means my wife would be encouraged to go back to work (teaching year 1), the school has been fantastic so far not putting her on any rotors even for printing but as you can imagine it only goes so far. 

Hi Brew,

I think most of us are captured by the blood cancer guidance bit rather than the SCT bit. The government guidance says “people with leukaemia, lymphoma or myeloma at any stage of treatment” are clinically extremely vulnerable. Bloodwise then goes on to confirm for myeloma this means everyone, regardless of the remission, because it is a cancer of the antibodies it is thought you are permanently at risk of infection. I think leukemia and lymphoma are not the same and it very much depends on what type of leukemia or lymphoma you have as to how long you have to shield.

My wife is a teacher and I have 3 school age kids, one of whom is in the bracket to go back on 1 June. To say it is causing us a bit of stress is an understatement. My wife’s school have been really good and said because of me she doesn’t need to go back to school until September. What we do re: my daughter is another concern - we don’t want her to miss out on schooling but it is going to cause us some practical problems if she does go back so a tricky decision. The shielding guidelines are ultimately only advisory so I think everyone will have to make the call that works best for them.

All the best

Greg

Picking up on Greg’s point, as I said I am 4 1/2 years post SCT and in remission.

I got a call from my SCT team a few weeks before ‘shielding’ became part of our language, she said  “Mike in our view.  once a blood cancer patient always a blood cancer patient"......... "Yes you are in remission - not cured so you are ‘living’ with cancer and all the treatment you have had has indeed had a long lasting effect on the effectiveness of your immune system and 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 just don’t know how a post SCT patient will react - let’s be safe and not sorry”

I am in the fortunate position that I don’t have the same pressures like others have so we will all have to do what we think is best for us individually....... yes as the risks are reduced I will be out and about more but it will always be part of my thinking just the same as other types of viruses are.

Ah didn't see the blood cancer bit (the NHL didn't jump out at me), skim reading looking for stem cell. Doh. 

Just read again sorry for being thick, is lymphoma covering non hodgkin's too?