Immune system

Hi again jfd2165, million pounds question.

First your team will know where your counts are at so this would be a guide to how your immune system is so give them a call.

I was 18 months before my team actually said my blood counts were with normal zone and I was taken off most my meds.

I am now over 4 1/2 years post my second SCT and even on Wednesday past my Late Effects Nurse said “think you have just come through your Allo SCT again and take exactly the same precautions as I did then........” so I am basically back into a few months isolation controlling everyone I come in contract with and where I go.

Hi Thehighlander,

Thank you for your reply . My bloods have been really good recently, but I will ask my nurse for more info . Did you sleep a lot after your SCT , I go to bed about 1030ish don’t always sleep well but sometimes I can sleep until 10 or 11am !!! 
it’s a worrying time for us all at the moment take care .

Best wishes

jfd2165

You are only a few months post SCT so this is very early days.

So, yes to the sleeping but I was practically bed bound for 6 - 8 weeks post SCT then eventually started to get back on my feet but was still in a wheel chair for a further 8 weeks.

Even now, I am in my bed by 10pm and don't get up till 7.30 to 8.00 and sleep most of the night.

When I was working I was up till 12 midnight and then up again at 6am and only had 4-5 hour sleep during the night.

Many thanks Mike .

Best wishes 

jfd2165

Hi jfd2165, 

sleep is healing, so please don’t worry about long nights zzzz-ing! 
and counts vary enormously about your immunity, your team will advise. But yes, having had a blood cancer and being post transplant does, I gather, put you into a more ‘at risk’ group for the present circulating virus.

take care and keep posting!

hugs xxx 

Thank you Moomy you too take care xx

I have asked the immunology department that look after me if I am in the at risk group. I am almost 7 years post transplant but I am still on Immunoglobulins.. In my mind the fact that I take immunoglobulins means my immune system is constantly topped up so I am not in the at risk group... That of course may just be wishful thinking on my part. When I get some news I will let you know. 

I also have a clinic appointment with them on Thursday, which they have switched to a telephone appointment so I will find out by then.

Look after yourselves everyone!

Myeloma UK is saying this morning that all myeloma patients, even if you are in remission, will be part of the higher risk group and so asked to self-isolate for 12 weeks. They say further guidance will be coming in the next couple of days. Anyone with any specific concerns should contact their medical teams.

Thank you greg777, I have also heard from my nurse that we are classed as vulnerable for up to 6 months after SCT , and all patients are going to be contacted that we’re treated at Kings ( London ) for SCT this afternoon with guidelines.

I will let you all know what it says . 
Kind Regards 

jfd2165

I'm not sure immunity can be measured. And really, no one really knows how COVID reacts with our immune systems.

I'm still on sirolimus and tacrolimus so that must make me more vulnerable. I asked the dr and he couldn't answer. And then how does dosage affect it all? So many questions.

Hope this helps