I had low grade lymphoma in 2015. After 4 months of chemo I have been in remission. I just got the NHS letter offering me the new Covid treatment as I am in a high risk group. I didn’t consider myself high risk so am quite surprised? It made me also wonder how long I need to carry that little card around with me (I haven’t been …) saying that I would need gamma irradiated blood if I ever need a transfusion.
2 Likes
Hi and welcome @cherpel, very good questions and perhaps one best asked of someone that knows your medical history. Have you still got a haematology contact or perhaps your GP? You could also ask about carrying ‘that little card’.
Others might be of more help and if you would like to talk to someone the Blood Cancer UK support line is there for you.
We are always here to support you, look after yourself and stay safe.
1 Like
Hi @cherpel. As @Erica said that’s prob a question for your medical team. I was diagnosed with NHL follicular lymphoma in 2017 and received the letter today as well. Do you still have regular check ups?
1 Like
Hi, nice to meet you! Yes every year. Do you know what that card means? About the blood?
1 Like
No, I didn’t have chemo, just an op and radiotherapy so not sure what the card is for. I’m have 4 monthly checks x
i am not medically trained @cherpel but perhaps the card is to do exactly what it says on it, to make sure you get the right blood if needed. Another question for your medical team although the Blood Cancer UK support line or other might be able to help.
1 Like
Hi @cherpel Welcome to the forum, i hope you find it really useful as it really is a wonderful place to help share your experiences and questions. You ask a really good question & one we have received a few calls regarding also. As both @Erica & @Nichola75 have so rightly suggested- it may be a good idea to check these queries with your haem team as they will be best advised to advise based on your individual circumstances.
We appreciate this is a somewhat confusing time for people particularly if you were not expecting it but please do feel free to contact our support line on 0808 208 888 if you need to talk things through.
Best Wishes, Lauran
2 Likes
Hi,
I’m the same been carrying it around since 2018.
I never thought to ask if I have to carry it for life!
I looked it up and it’s something to do with white blood cells and lymphocytes. Apparently some people need to carry it around for life, others don’t depending on why you were given it in the first place. At the time I was told it was because I had Bendamustine. Have a phone appointment coming up on 25th Jan will ask what the position is.
3 Likes
I’d be interested to know what they say, Ann! My appointment is in April. I’ll certainly ask then.
2 Likes
Ok cherpal I’ll write a note to remind myself to post the reply
2 Likes
I had bendamustine and was told I should make sure I only get irradiated blood products for the rest of my life eg if I need a blood transfusion. To try and avoid getting Graft vs Host disease problems.
3 Likes
That makes sense, I’ll check though. Probably better to assume you need to carry it though. If I remember rightly I was told it would be on my medical records anyway, but I’m supposing that could be missed and the card if there for emergency situations. Hopefully they will never happen
2 Likes
Hi cherpel, what is the new Covid treatment?
1 Like
This is the link I’ve been sent.
https://www.nhs.uk/conditions/coronavirus-covid-19/treatments-for-coronavirus/
1 Like
As I understand it with solid tumour cancers after 5 years of remission you are not considered at risk but with the blood cancers it’s a different kettle of fish and with some you are always at risk.With some like Kaporski’s Sarcoma, actually a blood cancer despite the sarcoma bit, and Mycosis Fungoides you can never donate blood or never be eligible for being an organ donor.It is different for these ailments as some like Hodgkin’s Lymphoma they have a good record at putting them into remission but a lot they can’t.
1 Like
Thanks for asking and I’m ticking over but swollen lymph nodes under both armpits.I asked the Macmillan nurses about it and they wondered if it was a response to my COVID-19 booster?I don’t know enough about such things but that was about 5 weeks ago so my own common sense tells me probably not plus it didn’t happen with the first or second jabs,nor with any flu shots I’ve had.I have hospital on the 17th of January so I’ll see what they say.Happy 2022!
1 Like
I don’t know about swollen lymph nodes as a side effect. I think we know our own bodies really well though. I’m glad you have the appointment soon so you can get them looked at properly. Keep us updated.
Wishing you a happy and healthy new year 
1 Like
Hi Cherpal,
The very same question has come up on WMUK Facebook page.
That’s Waldenstroms, a rare lymphoma.
Someone posted a link to the Lymphoma action website which gives a very clear answer to the question regarding irradiated blood.
https://lymphoma-action.org.uk/about.../blood-transfusions.
Hope the link works if not just go to their website, I’m sure you will be able to find it there
1 Like
Don’t think the link I sent works
Try this one
2 Likes