Just finished the Cancer52 launch. Many charities were invited who deal with lesser known cancers so the questions in Chat were flying in fast and furious. I know my original question was second question in and it was “What will the government be doing for all the people with any form of blood cancer who are getting negative results for antibodies against Covid”. I waited and waited while other questions were being answered, all very good questions about funding for, and raising awareness of, lesser known cancers. By 3pm I asked the question again. I said I wanted to go back to my support group, MPN Voice, and be able to tell them what is going to happen. By 3.25 my question was still not answered. I knew if I didn’t voice it in this, the best platform to ask, I would kick myself. So I raised my hand to ask to be heard.
My statement/question was “There are are hundreds, probably thousands of people who have had both vaccines but have been tested and shown to have no antibodies. I feel we are the ‘Forgotten’. We have nobody to turn to for answers because nobody wants to refer to us. I lost my mum and Aunty to Covid so I know the horrors of it. I have lived inside 4 walls for 15 months but it’s not just my life that is on hold, I am basically responsible for the lessening of my husbands life to. Who is going to listen to us”
I tell you I was shaking and very close to tears.
My question was responded to by Paul Bristol, MP who asked me to contact him and he would take the message to the NEW, and he emphasised NEW, Secretary of Health. So I am going to pursue this with him.
I was also told on Chat that Blood Cancer UK are looking into the situation and that PROVENT are doing trials of people not getting any antibodies following vaccination.
I hope you will check out the launch that is available online today. Thanks for the support guys
Jill
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jillydabrat
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Well done to you Jilly, and all the others representing their cause.
That was a great question with regards to the vaccine antibodies response in blood cancer patients, and I’m sure we’ll all look forward to the response.
For those of you who may have difficulty accessing the link where Jilly speaks about her journey with PV I’ve posted it below.
Thank you,Jill, for your perseverance. I’m sorry they made it so difficult and frustrating for you. It is a very good question and I am looking forward to hearing the answer.
If you look in the 'news' section of Blood Cancer UK there is an interesting post on 18th June about research on the antibody problem. So glad Jill got to ask her question - we certainly seem to have fallen off the national agenda. Diana
Hello Diana, sorry I’ve taken a while to reply, but thank you so much for telling me about the article in Blood Cancer UK News section. I have read it and lots of the information in the Links they give. Really good in depth information. I’m really grateful to you for directing me to it. Let’s hope Jill’s terrific input gets all of us somewhere regarding protection.. kind regards, Fran
Well done. You are proving that assertive patients receive higher quality care. Passive patients do not. This includes when talking to elected leaders and the Secretary of health.
Jolly well done Jill , I applaud your perseverance and good on Paul Bristol for picking it up and offering to run with it. . I hope he's good to his word. You done us all proud and we're proud of you 🙌
Well done Jill. Sounds like it was very frustrating getting your question answered. Hopefully your perseverance pays off and will get a response soon. Thank you ❤️
Congratulations. So glad you had the courage and determination to make your voice heard and get that question out there. Let us know how the follow up goes.
Well done Jill! It’s a brave thing to speak up when you’re feeling nervous and vulnerable 👏🏻 I hope you’re as proud of yourself as we are of you! Thanks for advocating on our behalf 💚
Hi, I saw my mpn expert last week and asked him about people with mpn's not getting protective antibodies from the vaccine. He said that many people with blood cancers and others have tested low or even at 0% for antibodies after the vaccine. He told me that the antibody test is not a very accurate test and did not recommend that I get the test. He said I should probably wait until the testing is more accurate. Good luck to you.
Hi Meatloaf9, this wasn't a purchased testing kit that I used, it was a test received at random from the government in association with Kings College. I wouldn't rely on a bought testing kit but I was pretty confident that the government wouldn't send out thousands of duff kits.
Hi I have ET & had both Astra Zeneca jabs - the 2 one on 18th April.I have emailed Blood Cancer support group for comments & advice-no response so far. However, I have not isolated since 6 weeks post first covid vaccine. My consultant is happy with my blood profile & told me to carry on as usual. Which blood cancers require constant isolation ?15 months is not living.. but neither do I want to invite Covid into my body!!
15 months of being with my husband, dogs and zooming my friends is far better than being placed in a hazardous waste bag then into a coffin like both my mother and Aunty were.
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Survey on behalf of Cancer52 
Good morning all , It was a very good forum at guys hospital ,on Monday evening , the hospitality was first class .the education was greaT
I did it!
How did you decide on your treatment?
