COVID-19 advice for post transplant patients

Thanks for putting this up greg777 

Hard times indeed, my wife and I have had a busy morning on a Zoom Conference call with all out staff putting them on Furlough 3 months - a few tears were shed 

I have put this up a few times but it would fit in this new thread as well as this can collect information we can signpost folks into.

A few weeks back my SCT 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 also have the added issue of having Asbestosis so I am well and truly in the 'Shielding' group.

It's only the two of us in the house so we are being very carful but not OTT on the 2 meters rule - but this is a personal choice.

Stay safe.

Daughter had her text yesterday saying she is at very high risk. Trouble is, she still needs to go in for i/gs, and is booked for Friday. They say they cannot train her to do this at home till August! So she is going to prepare well, scarf, gloves etc, will put spare set of clothes and a bag in her camper van, change fully directly out and shower and change again once home, everything then into the wash (including her sketcher trainers!) 

That's all she can do, but is obviously really scared by it all. 

Hugs xxx

One bit of positive news from daughter, she's now sorted and on her way home. She is the very next person in the south of the country to get home trained! However (there's always one!) the company who supplies everything has at present closed their list. 

She's now going onto long term antibiotics plus an emergency set for any time she's unwell, as a way of helping her if at any time she can't get through for I/gs. Think in view of her age and slight allergy problems they were trying to avoid long term antibios. 

Hope she remains clear....

Hugs xxx

Hi Moomy,

What was the concern regarding your daughter’s age and long term antibiotics? Just wondering as I’ve been taking them daily since age 36 (5 years) and nobody has mentioned any long term issue with this?

Cheers 

Greg

Hi Greg,

she developed an allergy to penicillins, and reacted nastily to Septrin too. I think they are very aware at her hospital of the risks of bugs gaining immunity too. She’s now 42 and her problems limit what they want to try; she didn’t get on well with Ciprofloxacin recently either. 

Hugs xxx

Ah ok, thanks Moomy. I do have this nagging doubt in my mind, you see so much in the news about antibiotic resistance, yet my medical team have never said it was a problem for me. I suppose it is the lesser of two evils?

It is a little bit like this Coronavirus thing. It is a little bit frustrating that I am still having to shield despite being over 4 years after SCT, but SCT was never about cure for me - it was about buying time. I just have to accept that myeloma permanently affects the immune system so again, I suppose the way to look at it is that the shielding is better than the alternative.

Cheers

Greg

Hi Greg, 

Yes, I think they are hoping she will go on to a long life as she's been in CR since 2011. Trouble is, nobody told her immune system! (it's less than 1 which I understand is virtually nothing, the low end of normal is 6) And yes, she's been isolating for a good 2 weeks already. Fortunately she has her own music/recording studio where she's always busy. Even as a freelancer she's been able to teach her conservatoire pupils on line and has been playing about recording stuff too, the latest being an arrangement for her instrument of the 'Back to the Future' theme (one of her favourite films), it was the composer's birthday yesterday.  

Hugs xxx

Hi Moomy,

I feel very lucky to still be able to work from home, it’s great how technology allows us more flexibility like that, it just wouldn’t have been possible 20-30 years ago.

I have absolutely no idea what my Immunoglobin level is - I was taking them for about 15 months after transplant and then I had my PICC line out and the consultant asked did I want to continue with them. I am not great with needles and had had enough of being in hospitals, so I said I’ll see how it goes. That was 3 years ago now and I’ve not asked since - I very much live by the no news is good news motto. One thing I did learn that I would rather not have learned this week though is that myeloma is unique in that it always weakens your immune system, even if the disease is not active. I was puzzled why lymphoma and leukemia patients were being told it was ok not to shield after 2 years post treatment but myeloma patients were always being told to shield. And that is the answer - because the cancer is of the antibodies themselves, your ability to fight viruses is thought to be always and permanently weakened. Something I would rather not have known in a way, but fascinating science nonetheless.

Hope your daughter does well with the shielding and let’s hope a vaccine can be developed really soon!

Greg

No letter received by me..  Verbally told "vulnerable" but not highly vulnerable.. Difficult one.. I really don't want to stay in for 12 weeks so will be sensible and follow rules etc.. Have split house as wife is a nurse at a local general hospital. So see each other but different bedrooms etc.. Day 4 and I am so bored already!!!!

This is the revised advice on the lymphoma action site due to the confusion around lymphoma patients, no mention specifically of SCT patients though

The government guidance refers to ‘Patients at any stage of treatment’. This includes people before, during and after treatment.

• Before treatment: people who are on active monitoring (watch and wait) for low-grade lymphoma.
• During treatment: people who are currently having treatment for lymphoma. (Patients on treatment should follow the standard neutropenic sepsis pathways and telephone for clinical advice as stated by chemotherapy unit prior to commencing treatment.)
• After treatment: people who are within 2 years of finishing treatment, or longer if ongoing recurrent infections.

hope this helps, but as we always say check with your team, it does still seem to be a confusing picture when you read posts on various platforms of people who have received the letter and those who have not. As of Monday people can contact their GP and query if they are highly vulnerable or not.