Third or booster Covid jab for "vunerable" patients in UK

The link i found on the BBC to the gov.uk website says it will be specialist lead but other articles say it will be a letter from your gp within 10 days.

I have just seen a report on Medscape dated September 1 st and I summarise:

Jonathan Van Tam said "I welcome the advice from JCVI to offer a third primary dose to those with severe immunosuppression, at a bespoke interval advised by their specialist clinician,and guided by the UKs  immunisation handbook ,the Green Book"

Certain groups will be offered other medical interventions that can be used in these groups including specific treatments like antivirals and monoclinal antibodies.A flexible approach given by JCVI was to have the third dose before starting chemotherapy rather than during treatment.

Severely immunosuppressed people would still be likely to to be offered a booster dose some weeks after their third dose.

So as far as us CML patients are concerned one of the key issues is whether we fall into the category of being severely immunosuppressed as a result of our tki treatment that essentially is targeted molecular therapy rather than being specific and cyclic chemotherapy infusions .My specialist sometime ago was of the opinion that we with CML might be mildly immunosuppressed only.

As well in the absence of data that would indicate as a group (CML) our antibody status after two doses is different from the general population  then we might still be wondering whether it would be wise or necessary to have the booster dose following the third dose (it looks likely that the so called booster dose would be offered to a wider audience based on age such as over 50/60 and a range of other conditions and we await government announcement on this).

Has anyone come across any definitive studies of the antibody response after two jabs for CML patients as a group as opposed to leukaemia patients in general,or the wider group of blood cancers,or the broad group cancer sufferers? In other words what is our immune response.

Next week I have a face to face with my specialist  who holds a senior position at a major London cancer treatment hospital  and I will  try to find out a little more on this issue and seek his opinion.

Regards

John

This is the link to the JCVI details on the UK government website

https://www.gov.uk/government/publications/third-primary-covid-19-vaccin...

Clearly includes CML.

JCVI specifically state Cronic and Acute leukeamia should be vaccinated and my consultant has already said i need another vaccine as she did an antibody test and my response was not good. The third jab is done to make the response equivalent to a healthy person and mine is definitely much lower than that. I am sure not every one will have this response but there is i do not know any reason why my response should  be impaired. I am 57 with a pcr of .02 so well managed.

May be I am the exception that proves the rule and everyone else has the same response as a healthy person and will not need it. 

I agree with Christine,  I had an antibody test done by hospital when having last routine  blood test and although my Haematologist was pleased that I had produced some antibody response I was told it was insufficient and not the equivalent of that expected from a normal healthy adult so to "continue to be careful" tricky  teaching in a uni situation however she did say that she hoped a third or booster would become available and although she would not put CML patients at the head of the queue she hoped that we would be considered eligible before the general roll out to all over 65s.

I had a blood test a few years ago and was told it was slightly low. I was seeing a nutritionist at the time who advised i take 4,000 iu daily which i do. Not had it tested since as it is not a test that is done routinely. I will ask for it to be added to my next tests.

Christine - You want to increase your D level to over 50 ng/ml ideally around 70 ng/ml. for maximum benefit against respiratory virus' as well as help minimize cancer.

I take 7500 IU's per day in Fall/Winter which for my latitude is now. I do this by taking 5,000 Iu's one day and 10,000 the next.

This barely keeps me close to 70 ng/ml - although it has fallen as low as 50 even on this dose during winter. I take it with vitamin K2 (200 mcg) as well.

Hi Christine

If as you say JCVI have stated that CML and AML will be included as conditions that  fall under severe immunosuppression then I guess that all of us with CML will at some stage be qualified to take up the offer of a third dose.From what I have read when the booster jab programme is announced for over 65 s then we would be asked to take another jab as well under the  .

I dont know my antibody status but I will seek to have the test if possible .I do know how you feel about being reticent to go back to normal-back in Nov 2019 I had to discontinue imatinib due radiation therapy for prostate cancer  but after 14 weeks lost my MMR and slipped back to a PCR of 10%! It took 14 months to get back to a PCR below 0.1 which is safe territory.

Despite not knowing my antibody status I decided 3 months ago to try to go back to normal by going to the shops, supermarkets and restaurants but to still take the precautions;I have noticed  though a fairly rapid decline  by others in the use of masks and also sanitising which does concern me.

What is not being publicised are the spikes in cases post festivals among the young and how in Devon and Cornwall post so called staycations the young and the unvaccinated are very prone to contract still quite serious cases of Covid.

As a postscript some recent research from Israel has shown that booster jabs have started to have an impact on lowering recent spikes in even double vaccinated people (general population).

I am quite happy to have two more jabs  for extra protection if and when available.

Also dont forget the flu jab which is available with Boots (my preference) free of charge late September early October  and some well organised GPs.

Regards

John

Hi Nimbus

Your comments are  interesting on a number of counts.

A Perhaps it is an idea for us with CML to ascertain our antibody status so that if we  have a depleted status we can really push to be jabbed for the third time.

B.It is still unclear as to who will make decisions as to who will qualify-1. GPs,2. GPs/specialists or 3. specialists alone;if you remember at the beginning of Covid the database compilation of vulnerable persons was flawed and chaotic.I see my specialist Tuesday so will ask what is going to happen.

C. I have just seen a gastro-enterterologist who said the third wave is on the way and with many of the population not aware or not caring and with the return to Universities and schools we are going to have an explosion of numbers but with a hospitalisation rate lower than previous waves.However there will be impacts on procedures so for instance if one needs a scan it has to be deemed urgent and if you need a colonoscopy say then because of the risk of Covid it has to be deemed very urgent -that is even in the private healthcare sector. In the NHS the wait might be months or years I guess.

Blood tesst are being rationed because we are short of containers and now the flu jab roll out is delayed for two weeks due to distributional problems over lack of drivers!

So I think we need to establish to what extent we are at risk-ask for an antibody test or pay for one privately and then push by whatever means to be third jabbed.

I think in the next week or so government will push for children 12 plus to be vaccinated and boosters for over 65 s announced -this is apart from the third jab for the immunosuppressed.I dont think we will have any more lockdowns nor will we have any more compulsory masking or sanitising so the risks for the vulnerable will be heightened and it will the survival of the fittest in order to reach that awful term herd immunity .Take care.

Regards

John

Thanks Sandy.  The results say 40 nmol/L with a normal scale of 50 to 174.  My haematologist didn't seem too worried and said it was slightly low but the nutritionist was more concerned.  I have 4,000 IU tablets and have ordered some with 4,000 but with K2 as i intend to take one of each per day.  The only place i can find anything over 1,000 IU is Amazon as pharmacy's and health food stores don't seem to do it.

I don't find it easy to get the Vitamin D tested and with the current restrictions due to the lack of tubes this may be difficult for a while yet.

Dear Sandy

As far as I can see Vitamin D does not appear on the standard blood tests list and does not appear to be a subset of another test.

What are the circumstances in which NHS clinicians will order a Vitamin D test?

Regards, Stephen

Hi Christine,

I order 4000 iu with correct amount of K2 included ... as you have found high dose caps/tabs are more readily available from amazon. (if you do order via amazon please use smile.amazon and choose the chronic myeloid leukaemia support group as your preferred charity - (this means we will get a small percentage of your purchases donated to us - every little helps us keep this website going!) 

Sandy

Hi John

Everything went silent and the vaccine minister then added us to the first people to get the booster so i assumed it had all be abandoned. Then yesterday and this morning I saw a number of nhs trusts had posted on twitter to say that people would be contacted shortly and not to contact the nhs.  There was also an online article from "Pulse" saying vaccines could begin on 13 September as the nhs systems needed to be amended to allow for the inclusion of a 3rd jab.  GPs were given to the 17th to finalise the list.

To be honest i have no confidence in being contacted so it is still just a wait and see.  All seems a complete mess. 

• https://www.timesofisrael.com/1-in-4-hospitalized-covid-patients-who-lac...

More important than getting the vaccine or booster shots is making sure your vitamin D level is higher than 50-55 ng/ml. Having a high vitamin D level BEFORE you are exposed to Covid will insure you either do not get sick or it is mild and not an issue.

Remember - it can take many weeks to raise low vitamin D levels. During this time, Covid is a risk - vaccinated or not. But once your vitamin D levels are higher than 55 ng/ml - and you become exposed to Covid, chances are you won't even know it.

.... what is going out in letters from gp's and hospitals?

If you look online most countries have started the additional jab on immunosuppressed. As far as i can see the USA has been doing it for some time and so has a lot of Europe. It has been agreed we should have it but the system has not been put in place yet.

I agree there are still alot of unknowns. Are we more at risk if we get covid and what proportion of cml patients have a strong response to the vaccine? It us a shame little practical research has been done on this and most is theory.

Hi Sandy

On the subject of vitamin D, I had mine retested last week after being of 4,000 iu for the last 2 years since i was told my level was slightly low at 40nmol.  Normal is 50 to 175.  My result for last week is 178 nmol so it is too high now and I have been advised to reduce my supplement level.  This obviously shows are bodies each react to vitamin D in a different way so level of supplements need to be checked with blood tests. I was told a high level can result in calcification.

Interestingly my haematologist wasn't a fan of vitamin D supplements and is an unbeliever in the benefits.

He also told me he had no anti bodies from his vaccine but caught covid which had minimal impact for the week he was positive.  He believed T cells were much more important.

I know we all have different opinions and are bodies all react differently but this has given me a bit of courage that i may be more protected than i first thought.     

I'm sure Sandy will reply to your post.

Your 178 nmol is PERFECT. In fact, Sandy will likely say it is a bit low.

Your hematologist doesn't have to be a fan of vitamin D supplements. You do! You should ask your hematologist what is the role of vitamin D and vitamin K2 in the caroboxylation reactions in calcium transport. If he doesn't know - get a new hematologist.

So called 'normal' vitamin D levels are set by so-called 'experts' in order to prevent rickets. This is what the normal range is referring. Vitamin D, however, is vital to immune activation of T-cells. The very cells your hematologist mentioned. He probably doesn't know vitamin D's role in T-cell activation.

To repeat:

1. Vaccine triggers an antibody response forming an antigen to the viral protein. In order to attack the virus (or the vaccine itself), T-cells have to be activated (replicate in large numbers). During vaccine response, few T-cells are made because the vaccine is finite. Only the antigen remains as part of the immune memory ready to form T-cells specific to the virus.

2. When the virus is encountered again, T-cells take up vitamin D (via their vitamin D receptors) in order to replicate in large numbers and attack the virus. This replication is what leads to a large antibody response. Without adequate vitamin D - T-cell response is sluggish taking days what otherwise would take a few hours.

3. Studies have shown that maximum T-cell response occurs when vitamin D level is greater than 137 nmol/L. And maximum cancer suppression response is documented at greater than 70 ng/ml. This is why it is important to maintain vitamin D levels at or greater than 70 ng/ml for CML.

So-called over calcification due to high vitamin D is near impossible below levels of 500 nmol/L - and if you take vitamin K2 with your vitamin D3 and keep daily vitamin D3 intake to no greater than 10,000 IU's per day - it simply won't happen.

Hi Christine,

I agree with everything Scuba has noted in his post to you. I would like to point out that the difference in measurement of D3 is crucial when trying to follow the 'guidelines', which Scuba also pointed out is the lowest level you can have before risking development of rickets!

From what I understand 40 mol/L(nmol per litre)  is not 'slightly' low, it is according to some research, very likely verging on deficiency. Your result from last week at 178 nmol per litre -again from what I have read - is not considered by some to be 'too high' at all and certainly does not put you at risk of toxicity! 

To convert nmol/L (your measurement) to ng/ml divide by 2.5.

So your D3 level is currently at 175 nmol/L divide that by 2.5 and your result is 70 ng/ml, which to many researchers or forward thinking doctors on this subject, is a good level, if not yet at optimal.

It depends who your read/listen to. Scaring people with possible D3 toxicity is to my mind irresponsible without giving the context of what toxic levels are. Toxicity is very rare and difficult to achieve...see another post I made on a different thread. 

-----------------------------------------

Snip from another thread -

It is highly unlikely that you will 'overdose' ... D3 toxicity is extremely rare and would mean taking excessive amounts over a very long period. For the worried/cautious amongst us, please see this publication, by Michael F. Holick, PhD, MD, Section of Endocrinology, Diabetes and Nutrition Department of Medicine Boston University Medical Center Boston, MA, which discusses the topic of D3 toxicity.

".......The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years...."

------------------------------------------

Why convert your measurement? Because most of the research that I have read on optimal levels (not medically conservative 'status quo' levels) uses ng/ml which is a much small amount of plasma -per millilitre instead of per Litre. Here lies confusion and the apparent cautious (scared for no reason) attitude of some members of the medical profession who are not expert or even basically educated in nutrition and or vit/min supplementation.

It is entirely up to you who you listen to.

My own choice is to keep my D3 levels at or above 100ng/ml (which is equal to 250 nmol/L) I do this by reading not only as much as I can on the subject of optimal nutrition, but by also 'listening' to my body and then making my own decisions. I feel better on so many levels when I keep D3 at an optimal level for myself as an individual. Age, weight and general health can effect what works best for any individual. 

It is your choice, but my advice is to keep your level well above the current minimum recommendations. So your current 175 mol/L is much better than your previous low level.  Read as much as you can and make your own decisions.

Sandy

Additional recent information that vitamin D will help minimize Covid severity or outright prevent it.

• https://www.marketshockers.com/vitamin-d-may-protect-severe-covid-infect...

Vitamin D may protect severe Covid infection, death: Study
September 16, 2021

LONDON, Sept 16 : Good amount of Vitamin D in the body before Covid-19 infection can prevent severe disease and death, according to an international study.

"They found that being deficient in vitamin D before contracting Covid-19 has a direct impact on the disease’s severity and mortality."

The linked article's conclusion should be no surprise to readers of this forum. I will be more blunt:

The single most important thing you can do to protect yourself from Covid - more so than the vaccines - is to get your blood vitamin D level above 55 ng/ml by supplementing with vitamin D3.

I am so convinced of this by my own personal experience over 10 years as well as all of the emerging research that I have zero personal fear of contracting Covid. I am sure I have been exposed to Covid from friends and family who all have had Covid (despite vaccination!) and called me (contact tracing) to warn me. Days and days later - nothing. Years later before Covid and exposed to people with colds and flu - nothing. Not even a sneeze.

Vitamin D is not magic. It simply is needed by the body acting like a hormone in sufficient amount to activate T-cells. These T-cells attack respiratory virus' and THEN (and this is important) other vitamin D activated T-cells are needed to calm the inflammation response against the virus AFTER the virus is gone. Recall people in the hospital on ventilators are there long after the virus is gone and the cytokine storm is wrecking havoc on their lungs. This is what kills in Covid (hypoxia). Vitamin D helps prevent the cytokine storm (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7246956/) so recovery is quick.

Other supplements which work with vitamin D to help it do its job include zinc, quercetin, and vitamin C. But without adequate vitamin D levels, other nutritional support is secondary.

Get your vitamin D level tested. Know your number (in nmol/L or ng/ml) and then supplement sufficiently to raise your D level to be above 55 ng/ml. Also note that it takes weeks to raise your D level. The time to do this is long before you are exposed to Covid. Start now if you have not done so already. Avoid taking more than 10,000 IU"s vitamin D3 per day. I take 7500 per day currently - and that barely keeps me at 70 ng/ml.

And as a bonus - you will be fighting CML too!

Alistair,

Superdrug do a Covid antibody test but you will have to pay for it and it is a straight yes OK or No not OK in the result as opposed to any detail.

I drew a blank in trying to get my haematologist to organise a test-said was not available.

John

My haematologist told me all her CML patients details were uploaded to the NHS trust last friday and i would be contacted within the next 2 weeks by text with details on how to get the jab.  We will wait and see.  She said that if i was contacted via my gp for the booster first then to take that instead as the NHS has nothing in place to give us a booster in 6 months time. 

The booster cannot be less than six months after the second dose. The "third primary dose" cannot be less than eight weeks after the second dose.

Letter from GPs surgery: Thank you for your enquiry regarding the 3rd dose of COVID vaccine for immunocompromised individuals. As this is quite a complex decision regarding the correct timing to any vaccination we would recommend that you ask your consultant haematologist his advice first.

Letter from Hospital Trust: Letters are in the process of being formulated by the trust to send to GPs, as it would be difficult for consultants to advise every individual patient.

Blood Cancer UK says that all blood cancer patients must receive third primary dose.

It remains uncertain whether recipients of the third primary dose will receive the booster.

Hi

Picking up on the reasons why some hematologists and other medics are not so sure on the benefits of taking Vit D or acceding to a  request to be tested I suggest some  reasons:

-Some of the "alternative" thinking on treating Covid suggests taking high doses of Vit C as treatment and other unproven treatments ;Vit D might be seen by some and even medics to be in that category.

-there are studies on the effectiveness of Vitamin D but there might not be the  trials that parallel the rigidity and so on used when introducing/testing other medicines

-Vit D might be seen as a food supplement as opposed to being a medicine

My specialist is very keen for me to have been tested and to take regular supplements of Vit D and K

My reasons to take it are clear-not many foods exist to give us natural sources of Vit D  and the  sun in many temperate zones is seasonal;add in that some ethnic groups find it difficult to absorb Vit D from natural sources such as the sun.

Regards

John

My primary care is in the Solihull area and my haematology unit falls to University Hospitals Birmingham (UHB).

UHB categorically will not entertain individual discussion with patients in respect of the Third Primary Dose. A letter will be sent to primary care from UHB.

I had a long and intelligent conversation with primary care in Solihull this afternoon. They told me that they have been directed not to proceed with the Third Primary Dose until oncology has provided information concerning "timings" which may vary from patient to patient. The stated implication of this is that either UHB has not provided its letter yet or the letter is tied up in the system. For now, I have been advised to wait until 20 October when my booster will fall due, i.e. six months after my Second Primary Dose. The surgery will record that a Pfizer jab has been provided and that a booster may be required six months later. I have also been told locally that no Moderna vaccines have been received and yet none are expected during the next few weeks.

So it does appear that in the Birmingham area, at least, the NHS remains on a go-slow and nothing is guaranteed to happen by the 11th. This is not going well.

By definition if you have a blood cancer JCVI have deemed that you might be immuno suppressed so we would be in line for the third dose.None of us with CML have any idea whether we are not immuno suppressed or mildly so or substantially so.

There has been a lot of unwillingness by consultants,NHS trusts and their hospitals and GP s who in some cases have been denying it is their responsibility to organise  the third dose-it seems to be chaos and variation by postcode.

There seem to be a number of tensions between consultants and GPs already -my consultant said it is about time GPs saw their patients face to face like he does! The third dose is another area of dispute :some GPs seem to have taken it on board as their responsibility whilst others are keener to increase their lists of new patients so that then they maximise their income from government as per their contracts.Remember GPs are not the NHS but on contract to government;in practises some GPs are partners and others are salaried and thus on the payroll and earn less.

Best wishes

John

Hi John, All

Re Survey to check Antibodies 

I have visited the Blood Cancer UK site and they asking for volunteers for research they are carrying out regards Antibodies 

if you go onto Blood Cancer UK and type in 

Launch of the National COVID cancer antibody survey                    press Enter.

A study has been launched today that will look at antibody response to vaccination in 10,000 people with cancer to try and understand who remains most at risk to COVID. The project will use these results and link them to health records to work out if there are certain diseases or cancer treatments that affect how people respond to the COVID vaccines. Those who decide to take part will receive an at home antibody kit and will be asked to give a finger-prick blood sample which will then be analysed in a lab. All results will be sent back. To take part in the study, you have to be over 18 and live in England, have been diagnosed with cancer in the last year, or you have to be receiving treatment.

To take part in the study, visit the Covid Cancer Survey 

The Blood Cancer UK Vaccine Research Collaborative have recently awarded funding to Dr Lenard Lee, to support this study.

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

The National COVID Cancer Survey is evaluating antibody tests in individuals with cancer. If you live in England and either, have been diagnosed with cancer in the last year or having cancer treatment, you can enrol to participate.

The test is a ‘fingerprick’ blood test which checks for coronavirus antibodies. The test kit is posted to you. It comes with everything you need. You take the test and post your sample back. Then you’ll get your results.

The survey will improve understanding of the protection provided by antibodies generated following COVID-19 infection and vaccination in individuals with cancer. 

The site has been having some issues. 

Update 07/10- The gov.uk home testing request website is not fully functional. We are sorry for the inconvenience caused. To complete the survey, under participant ID, you should enter the characters “cancersurvey“.

UPDATE 04/10- Thank you for the 2000th person who has registered to participate in the survey.

UPDATE 30/09- Thank you for the 1000th person who has registered with the survey. You may participate irrespective of the number of COVID vaccines you have received, or whether you are pre- or post- 3rd/booster dose. You can only self-record your first and second vaccine dose on the gov.uk website. This will not affect the survey analysis plans.

Thank you, John.

The revised date by which all this must be resolved is 11 October. However, the NHS has failed to adopt a consistent position.

Many GPs appear to have gone ahead with the Third Primary Dose with or without specialist advice. Other GPs have refused outright to engage with patients.

Having discussed the matter at some length with my local surgery, I sympathise with their position. The hospital trust is required to give direction as to the patients affected and the timings of vaccines. 

So we see wide divergences of approach by primary and secondary care in England. I do not see an early and satisfactory conclusion to this. Most of us will probably take the Booster during the coming months and it will be decided in retrospect whether that was a true Booster or a Third Primary Dose. 

Thanks Patch for this,

I went in to the site and signed up I believe, but then it directed me to the NHS/government site for antibody testing and it looks as this is a bit hit and miss;it is not guaranteed that you will receive the NHS test and am not sure of the criteria involved.For instance will priority for NHS antibody tests be given to those who already have had Covid ?

I will wait and see

Regards

John

The 8 weeks has been policy since announcement on 1 September.

The "Booster" is six months.

I got a text yesterday to say my covid booster would be on 24 October, which is exactly 6 months from my second dose. They also said they would do my flu jab at the same time - but they won't as I had that 10 days ago at the local pharmacy, as the nurse at the surgery said they hadn't received their allocation of flu jabs. This is the routine booster for the wider community.

Hi Alastair,

So 76.6 nmol/L puts you at around <30 ng/ml which as you say is low. Given all the research shared by users of this forum on optimal levels, I agree with you that it would be prudent to start supplementing with D3- especially as we are entering the darker months with little sunlight to be effective in boosting D3. I would say 1 x 3000 iu a day is a little cautious given you would ideally want to boost your current level towards an optimal level?- this would take you some time.

I take 3 x 4000 iu caps of D3 (plus Vit C/E/B, + Mag, Selenium, Zinc plus others) per day during the autumn/winter months. Slightly less during summer depending on daily access to sunlight. I aim to keep my D3 level at 90-100 ng/ml... of course this would be a much higher number if using nmol/L.

Sandy

Christine,

Yep - there is plenty of studies ongoing monitoring CML patients and their response to vaccines, not just antibodies but T cells and other parts of the immune system.

Dr Chowdhury (Oxford) and Dr de Lavallade (Guy’s) are two that I know of.

David.

Hi Christine and Alistair,

Finally I managed to get a 3rd Primary Dose of the vaccine but like yourselves it cannot be recorded as such by the NHS so I was advised to try to change the way it was recorded on my GP records.

In my case no one contacted me -neither hospital,consultant or GP (all too busy) or NHS so I went to a walk in centre who then said we have too many persons with appointments in the line so we are suspending walk ins;go away and make an appointment! I argued my case and was eventually given a jab.

I was advised to book a booster or a fourth one  in 6 months time depending on what policy will be then.

Like some others on Forum I have found the whole intention of the third primary  dose to have been completely mis- managed.

Regards

John

Thanks Christine for your response.

Yes I went to a walk in centre but on arrival they said we have too much demand so we are doing appointments only-go away and make an appointment! I then persisted and after lots of talking about immuno suppression they agreed to help me and allowed me in.

My vaccinator was probably a doctor or consultant because he knew an awful lot about antibodies and immunities- his advice was that all blood cancer patients  must still take great care by not just masking up but to  be scrupulous with hand hygiene.

The letter you refer to from blood cancer looks useful for those of us who are still struggling to be recognised as possibly immuno suppressed

On a broader front the shambles on the boosters goes on -in my online neighbourhood group people are getting messages asking them to make an appointment and when they call the NHS are told they dont qualify!

The next task for many of us CML patients  I guess is to try to get enrolled for some form of antibody test-the last resort would be a private one at Superdrug but it costs about £70.

Does anyone have any idea how long after the third primary dose one should wait for immunity to kick in??

Regards

John

Hi I’m Debbie, just over 3 yrs in and not a poster but very much a visitor to this site for your information and wisdom.  Background of stage 3c Breast cancer at 37 (2005) and CML at 50 (2018). I’m under Dr Chowdhury at the Churchill, Oxford and she is brilliant and very thorough.  I have been tested 3 months after each covid jab and positive for antibodies on both occasions.  However due to being a NHS worker I received my booster last Friday before receiving my 3rd jab invite letter this week.  Not sure where it leaves me but our next telephone appt is next week so more than happy to share info if this helps anyone in the same position.  

Debbie 

Are CML sufferers  “severely immunocompromised patients”?

I have had a notification from the NHS telling me I am Extremely Clinical Vulnerable, and I know that I am certainly more vulnerable than I was before. But as the TKIs are a targeted therapy, although technically Chemotherapy, possibly we are not so compromised?

Judging from John’s recent visit to a vaccination centre and chat to the medic who gave the vaccination perhaps we are…

Thoughts, information, please!

Thanks

David

After weeks, my GP will not move forward with the Third Primary Dose without a consultant's letter. The hospital trust will not speak to patient individually. So I am locked out.

Freedom of Information Request to University Hospitals Birmingham:

A letter was written by NHS England of Skipton House 80 London Road London SE1 6LH on 2 September 2021 addressed to GPs and Chairs of NHS trusts and foundation trusts amongst others entitled Updated JCVI guidance for vaccinating immunosuppressed individuals with a third primary dose. On page 2 the following is stated:
"We are asking all consultants to identify patients within their care who are in the JCVI’s definition as being eligible for a third primary dose and to consider the optimal timing for administering a third dose, based on the JCVI’s advice. The full list of eligible individuals is listed in Annex A and a template letter to issue to eligible patients is in Annex B."
Within this in mind and recognising that the communication appears to have failed in some circumstances leaving many immunosuppressed patients without a third primary dose, please answer the following questions:
[1] Have University Hospitals Birmingham (UHB) consultants completed the exercise "We are asking all consultants to identify patients within their care who are in the JCVI’s definition as being eligible for a third primary dose and to consider the optimal timing for administering a third dose, based on the JCVI’s advice The full list of eligible individuals is listed in Annex A and a template letter to issue to eligible patients is in Annex B."?
[2] Has a letter been prepared in connection with [1] above by UHB consultants?
[3] What was the date of any such UHB letter?
[4] Has the letter been communicated either directly or indirectly to GP Practices?
[5] What percentage of patients roughly with the blood cancer Chronic Myeloid Leukaemia (CML) treated by Tyrosine Kinase Inhibitors (TKIs) have been identified as patients requiring the third primary dose?

I have responded, John, to your private message. Something is very wrong. My GP indicates that no information has been received from the specialist. The trust flatly refused to talk to me as an individual patient.

For my part, I will be able to get the Booster on the basis of being 65 and being clinically extremely vulnerable (by way of CML).

I think that some of your guesses may be quite near to the mark. Blood Cancer UK is also looking into this for me. NHS England declined to engage because it is a trust matter.

Many thanks, Stephen