This is the first time I have posted, so hello to all members. Having avoided Covid since 2021 I caught it last month. As it was the weekend when I tested positive I phoned 111 and they were very good and said that the CMDU unit at my local hospital would be in touch and they duly were on the Monday afternoon. However, on being assessed I was told that as I had not had any treatment for 12 months (I am currently in remission and my Retuximab treatment stopped when Covid started) I would not be eligible for the antivirals. Now I have read the Blood Cancer website on eligibility and my take is that Follicular Lymphoma is a chronic blood cancer and is eligible for antivirals REGARDLESS OF TREATMENT? Could someone please confirm if I have got this right?
In the end I did get Molnupiravir, but purely due to the fact I had a low lymphocite reading in my last blood test. I was feeling pretty ill with Covid and not really in a fit state to fight my corner, but I have to say that once I started the antivirals within a few hours I was feeling much better. I have just about recovered now and hope that is my turn over. If not, I want to have all the correct relevant information available to help me get better and hopefully help anyone else in a similar situation
Hi @Mags1 so sorry you were ill with Covid, glad you’ve just about recovered. This webpage might be useful https://media.bloodcancer.org.uk/documents/Blood_cancer_and_covid_medicines_UK_September_2022.pdf
As you’ll see, the eligibility criteria for assessment by a CMDU for antivirals includes people with follicular lymphoma, regardless of treatment.
If you want to talk things through with us on the support line, please do feel free to give us a call on 0808 2080 888. Also @Mags1 - we’ve been sending through case studies to the NHS where the process around accessing antivirals could have been better i.e. where there has been poor communication, misinformation etc - if you feel comfortable, please feel free to email us at firstname.lastname@example.org and let us know the CMDU who gave you this information (or feel free to direct message me on here!).
All the best, Alice
Hi @Mags1 a great big, warm ‘Hello’ and welcome to you too.
@Alice_BloodCancerUK has responded to you brilliantly.
Why do I always seem to get medical issues on a Friday afternoon or the weekend, but I am glad the contacting part of the system worked for you.
I am glad Molnupiravir worked for you.
What I have found on our forum is that sometimes it does not matter what blood cancer we have we often share the same fears, feelings, thoughts, questions and practicalities.
I look forward to hearing more about you, so please keep posting.
Look after yourself
Hello @Mags1 I am so sorry that this has happened to you it must have been very frightening and distressing and I am very glad that the antivirals you had to fight for have worked so well for you.
I’m really glad you got them in the end! I have follicular lymphoma and got them - I only had radiotherapy back in 2017.
It’s a stress I’m imaging you didn’t need. How are you feeling now?
Much better thanks Nichola, but it took longer to get to this point than expected. We all want instant these days, but it is a horrid virus and you have definitely got to be kind to yourself.
You really have. That’s one thing we all find hard to do but living with cancer is tough. The members on here raking me I need to take care of myself as it’s easy to forget isn’t it x
Thanks for the confirmation for antiviral treatment if you have follicular lymphoma. I was going to write to my CMDU unit, as a bit of a thank you, but also enclose a copy of your link about antibody treatments, which is very succinct and clear. I have read the government version and it is so ambiguous I am not surprised the CMDU units are making mistakes. I will email you with unit details.
This is really interesting. I will discuss this “digital pathway” when I next have my check up with Haemotology. Thank you for all the info and your interest.
I’d just thought I’d share my experience of contracting covid and accessing treatments. I too have follicular lymphoma. I completed my maintenance in April 2021 and caught covid in April 2022.
I submitted my covid result and was contacted by a nurse within a few hours. Initially I was told I did not meet the criteria for treatment because I was over a year since treatment. I quoted @BloodCancerUK publications to the practitioner I spoke with and she said she would get a Dr to call me.
I did feel very poorly. I was called within another few hours and the Doctor I spoke with never hesitated to make the onward referral saying follicular lymphoma was an indicator for treatment. I was prescribed the IV treatment.
The following morning I was called into my local centre and was given the treatment. I felt the results almost immediately my breathing improved quickly.
I had a really positive experience. It must be difficult navigating the many different types of blood cancers to understand who needs treatment.
Glad you are on the mend.
It’s all very confusing isn’t it? It’s a mine field even if things go as you expect only to find that different hospitals and medical teams interpret things differently to each other. Fortunately I haven’t had to put it to the test and have managed to avoid Covid so far. I hope that things go more smoothly from now on.
I am on watch and wait with FL and never been treated….the guidance used to be clear. From the looks of the Government guidance I don’t fall into a worrying category anymore but that isn’t what BCUK seem to be saying. Bit confused
Hi Mags1 I am glad you got the anti viral treatment and that your dose of Covid wasn’t too bad - I have ET and have had covid twice now - the first time i tried to access the anti viral treatment but got nowhere and to be honest i was too poorly to keep trying - luckily i recovered but it took quite a while - the second time (about 6 weeks ago) when i registered my positive test on the government site i was told if eligible i would be contacted by the NHS for vital treatment - it didn’t materialize so once again i rang the appropriate numbers only to be told i wasnt eligible despite me quoting the advice given by the NHS/ government - luckily my 5th jab protected me as my dose of Covid was very short lived (only 3 days) and i barely had any symptoms - i only tested because my hubby was quite poorly with his first dose of Covid - it seems very hit and miss
Hello there @Bronte
Just to reassure you that you are eligible for the COVID treatment assessment, Follicular Lymphoma idependent of treatment is documented here:
From 13 June 2022, the written guidance explains that the following people with blood cancer might be eligible for a telephone assessment for new covid treatments following a positive covid test. People who:
- have any type of blood cancer (including chronic blood cancers, MPN and MDS) and have had cancer treatment within the last 12 months (aspirin is not a cancer treatment) - including people with CML who are in chronic phase molecular response, or on first or second line TKI treatment) (previously, these CML patients were excluded)
- had a stem cell transplant in the last 12 months - either allogeneic (donor) or autologous (using your own stem cells))
- have active graft vs host disease (Graft-versus-host-disease) regardless of how long ago the transplant was
- had CAR-T therapy in the last 24 months
- anyone else with CMML, myelofibrosis (CMML and myelofibrosis were previously excluded), MDS, myeloma (not including MGUS), or a chronic B-cell lymphoproliferative disorder (eg CLL, hairy cell leukaemia, follicular lymphoma, SLL, marginal zone lymphomas, MALT lymphoma, Waldenström macroglobulinaemia), regardless of treatment.
This guidance is fully explained in our web pages on Antibody and Antiviral treatments for people with Blood Cancer and is supported in the Goverment guidelines.
If you would like any support with information do call us: Blood cancer information and support by phone and email | Blood Cancer UK
@GemmaBloodCancerUK Thank you Gemma. I think I must have read something somewhere else.
It is hard to get your head round having risk when you seem healthy and have not had chemo. You have something sitting on your shoulder but it hasn’t hit yet and you do feel kind of fraudulent compared to what other people have gone through and therefore, the palpable risk they have.
I understand what you are saying but please don’t ever feel a fraud as you are most definately not. Please remember your eligibility for assessment is evidence based and concluded in regard to relative risk. So whilst you are well and off chemotherapy it is still important to manage the risks of COVID.
If you do need any support please do call.
@Bronte Very personally I would say to listen to what your medical team say and Blood Cancer UK says as I think they are the experts in blood cancers and the Government sometimes give blanket guidance.
The main thing is to look after yourself and your own well being.
I do understand that feeling of being a fraud - as I’m in the same boat. I sometimes need the wonderful people on here to remind me that I’m not!