some things are working other not so had a letter in December with an appointment for next week for my 4th. but as for the new treatments I would be entitled for new treatment if i were too end up in hospital but not at home.
i am on watch and wait for hypoplastic Myelodysplastic syndrome (MDS). I find the above strange as Myelodysplastic syndrome (MDS) has one of the highest mortality figures pre vaccine and also lowest efficacy to the vaccine.
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Hi @Rod and welcome to the forum. Then information can be so confusing canât it. As far as I know, the information that @GemmaBloodCancerUK gave previously in this thread still stands. Make sure you take your letter with you.
How have you been keeping? I look forward to finding out more about you 
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The things we have to do to get what we need! Let us know how you get on with your fourth jab.
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Hi @chris-j and welcome to the forum. The fourth jab info seems to be getting out but it does seem strange that you wouldnât be entitled to the new treatments of you test positive. It may be worth giving the BCUK support line a ring to see what they say?
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Chris,
this is the new information on the Myelodysplastic syndrome (MDS) site, it says patients with this condition WILL be eligible for sotrovinab, even if NOT hospitalised,
I am not a medic, but I would definitely print out the article and take it to your doctor.
extract from the articleâŚ
You can find a link to the full document below this article â and as a downloadable PDF â in case you need to take the information to your GP.
Non-hospitalised patients
Commissioning position by DHSC
The proposal is: Sotrovimab is recommended to be available as a treatment option through routine commissioning for non-hospitalised adults and children (aged 12 years and above) with COVID-19 treated in accordance with the criteria set out in this document. Where treatment with sotrovimab is contraindicated or not possible, eligible patients may be offered an antiviral as an alternative.
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thank you so much, it gives a little peace of mind.
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Luckily for me the chaos surrounding the third dose hasnât been repeated for my fourth dose and I had my relatively easily on Monday. Now just dealing with the side effects!
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Hi
Thanks for the info. i phoned 119 to arrange my booster which is due in 10 days as i had my third primary back in October
There reply was they had no information yet about the fourth dose yet and to ring my GP
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Are you still not feeling to well @Franko?
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I was starting to get on top of things then when I had my 4th dose I ended up feeling lousy again an havenât been able to shake it. Feeling quite weak and have been coughing non-stop which is painful. Iâm testing negative for Covid (in spite of the fact that everyone at work seems to have it) so either the tests are duff or Iâve just become more susceptible to the old style viruses that we got used to not having around after last year. With my paraprotein level on the rise, that would make sense as itâs likely to be the beginning of my relapse. The timeframe fits in with the typical path of Myeloma so I was expecting it.
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Hi
Sorry to hear itâs such a pain to get third jab. I had mine end of September and just had my pzifer booster couple of days ago.This was organised via my hospital. I was sent a text to advise I could now book being 3 months after my third dose. Hope you get you doses soon x
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I hope you start to feel better soon
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Hi @Franko it sounds as if you really are feeling lousy.
Sending you lots of healing wishes.
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Hi @Rod and @chris-j a great big welcome to our forum and you certainly have found the right thread here.
We are all here to support each other and share our experiences. The Blood Cancer UK website and support line are also here for you.
I will copy this to @Alice_BloodCancerUK so she knows your concerns.
I look forward to hearing more about you both.
Look after yourselves
I had the opposite as my gp said they didnât currently have any vaccine and to call 119. 119 were aware of the problem and gave me details of walk in centres i could go to. So sorry you didnât get this. You can check on the nhs website for your nearest walkin centre and what vaccine doses they are giving. I appreciate this is very variable and still might not work for you but worth a try.
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Hello to all who responded to my description of my difficulties re the fourth vaccine and particularly for advice from Blood Cancer uk. My problem appears to be that I never had a letter advising me to have the third vaccine. My GP surgery (which because of location has a monopoly on local patients) has never had any involvement with Covid vaccines and opted out of the PCN hub as they were too busy. The PCN looked up my NHS number noted that I had CML and gave me a third vaccine which was recorded as a booster but the PCN hub is now closed due to lack of premises and poor take up. Without a letter I will not get access to a booster/4th vaccine, Haematology say I can have a vaccine when I attend hospital at end Jan but they are moving back to telephone appointments so I may not be able to attend. Apparently my GP could give me a letter saying I needed 4th but impossible to get to speak to our one doctor or any of locums he uses until 20th January! Haematology are writing to GP copy to me and copy of letter they sent 6 weeks ago when I alerted them to the fact that GP practice nurse said 4th dose not needed for CML only blood cancer patients That letter I presume is lying unread in a basket or on an email system somewhere as is the usual situation. However hopefully I can use my copy of the letter confirming I am a CMl patient from Haematology to gain access to a PCN centre in a town about 18 miles away which our PCNâs very helpful receptionist tells me is what others entitled to the 4th vaccine have had to do. It should not be this hard!
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Does anybody know if the media info regarding the 4th dose is correct, it was on the news yesterday that the government were saying there is no need for a 4th dose
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Chrispy what website are you referring to
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I think the BBC news earlier did say âexcept for the very vulnerableâ. @jamesjoyce01 @Chrispy @Ismo
I have checked the NHS website and found a local walk in centre doing the 4th/booster. The half hour walk to get there will do me good.
I will go mid week as I am not due for the booster till 10/1/22 and report back
I will take a ream of letters I have received from the NHS last year and of course wear my Blood Cancer UK tee shirt and mask and be pleasantly assertive.
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Hi @Erica , I hope everything goes well and is straightforward when you go for your booster this week. Take care
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