Good news

[beetle]

I have been concerned about how much immunity response I would get from covid vaccine as I have a low white cell count. My haematologist today reassured me that as my lymphocyte count is near normal that I should get a good response. He did admit that there is still much to learn about vaccines in relation to MPNs but I found what he said reassuring

I intend to take and antibody test at least three weeks after my second dose to give me more idea of where I stand. I really want to meet my now four month old grandson and give my granddaughters hugs. There is no point in that if it puts at risk the year of isolating that I’ve been doing. Stay safe everyone

Jan

[Inclement]

I read tonight that the Pfizer vaccine helps to produce antibodies in healthy people but maybe not T cells, so I am concerned that perhaps protection in MPN folk may not be effective even after two doses, especially with the longer than recommended space between. I shall receive my second Pfizer dose tomorrow, 8 weeks after the first and was beginning to feel hopeful, but.............Any thoughts or info elsewhere?

[katiewalsh]

Dear Jan, since you’ve said you want to be sure you’re safe I want to share the information an MPN specialist at Moffitt Cancer Hospital in the USA said on Patient Power. He either said patients with blood cancers, MPNS or Myelofibrosis have a very high risk of death from Covid. You’ll need to go to the Patient Power site to find out which of those three he said. Because I have all three (I have MF) I’m not 100% certain what he said. I believe it was blood cancers but I’m not sure. There’s a study in Lancet medical journal that discusses it which might be easier to find . But having a decent numbers of lymphocytes is tremendous. Because of another Rare Disease, my lymphocyte numbers are extremely far below normal & I don’t create antibodies in response to the vaccine. Can you see and hold/hug your grandkids outside to protect yourself even more? I’ll cross my fingers that you’re able to go see & hold them. I miss mine terribly so I appreciate the importance of contact. If you don’t mind, let us know what you do & how it goes. A few of us have to live vicariously through others. Be well!. Katie.

[Alex9621 in reply to katiewalsh]

Hi katiewalsh...I also go to Moffitt and my doctor their highly recommended the vaccine and I actually thought of not getting it. I still am a little hesitant but as of now my daughter-in-law has Covid. She is already a few weeks into it and has already lost a lot of weight. She suffers at different times different things. She is only 28 and tough!! I keep her in my prayers constantly. Just thought I would share.

[katiewalsh in reply to Alex9621]

I encourage you to follow your doctors advice. S/He knows best.

[MPort]

You have worked out a good way forward. How will you arrange an antibody test? I would like to have one after second jab. Thanks.

[beetle in reply to MPort]

They are available online but I don’t know if they are accurate or even a con at £50! Somebody on here a while ago mentioned a good result after just the first dose. I’m hoping they are trustworthy.

[piggie50 in reply to beetle]

I would happily pay £50 to know how much immunity I had, but, a lot of the tests I have looked at online only show immune response from having Covid not from the jabs. I would not do it unless I was sure it was a post jab test.

[JojoWonder]

Hi Jan, I think the concern about the immune response is universal with MPN’s and I guess it also would be for any rare disease. I hate that we are in this situation 😔. I’ll share with you what my very experienced Haematologist told me in my review a couple of weeks ago after I’d had my second dose. He said as my condition is stable and I’m in good health he isn’t concerned about me. We discussed that as I work in close contact with people I was worried that it wasn’t a sensible profession to have and he said to take all precautions but it’s far too early to consider a career change!

I found the wording in one of your other responses very startling and alarmist and whilst I wouldn’t want to ignore or discredit anyone I think that we are all on a sliding scale and inevitably some people are going to be more at risk due to lots of factors including their MPN. As someone who has had a one to one reassuring chat recently with their Haematologist and been advised they are very likely to be safe after having my vaccines I was still triggered by the ‘very high risk of death from covid’ comment.

None of us have a crystal ball and I think the precautions you intend to take sound very sensible to me. I really feel for you not having been able to meet your new addition and hug your granddaughters but I really hope you will be able to soon.

Best wishes and best of health,

Joanne x

[Runner999 in reply to JojoWonder]

From what I have read, it seems that people who are ill enough to be admitted to hospital with covid and have an MPN are at quite high risk of death.

BUT - and yes that is a BIG BUT - most people who contract covid do not end up in hospital - especially if they have had the vaccine. So the overall risk to us as individuals is much lower than that quoted from hospital in-patient research.

On a FB ET page I asked if many people knew / were fairly sure that they had had Covid and quite a few replied with their at home illnesses and one lady who had been in hospital on oxygen for a short time.

I have ET and am on hydroxycarbamide plus clopidogrel and had a very mild illness just over a year ago on return from a ski holiday with known exposure over a week in a dining room with 100 people from around the world - many of whom tested positive, many of whom were ill and 2 recovered from intensive care. So please do not panic too much, especially if you have no other major co-morbidities such as being overweight or having diabetes.

[JediReject]

Hi Jan , ,I think most of us will feel a little more confident after both jabs and I briefly heard mention of a booster for vulnerable in September but might of dreamt it up or it might of been in future years. I'm in a daze most of the time as I've gone numb with lockdown fever.

Like you im a desparado to not only physically see but hold my now 6 month old Grand-daughter for the first time. And to give her brother and 2 sisters big hugs. I'm gutted not to have had the joy of cradling her as a newborn as I have the others.

I'm going to ask my Haematologist if as part of my numerous blood tests she will authorise an antibody test because I'd like to know the impact after my second jab. I may get knocked back but you don't ask you don't get. If you have one it will be interesting to know your result.

I hope you get to meet your Grandson and Granddaughters soon because I know how you feel.

Chris

[beetle in reply to JediReject]

Yes, Chris, you are right. There has been some talk of booster jabs in September. I think that it to hopefully deal with some of the naughtiest of the new variants.The grandchildren thing is BIG isn’t it. They had to cancel their wedding in May but by then they weren’t going to let me come in case the worst happened and I wasn’t here to meet my new grandson ( not that they knew it was a boy at that stage!) I certainly never thought he would be 6 months before I got to cuddle him. I have to say they have been brilliant with the Facetime calls and I’m totally in love already!

I’d certainly be interested to hear if your Haematogist says ok to the antibody test and what result you might get.

[Hidden]

Thanks for sharing Beetle This morning I woke up in a low mood and aching everywhere, but on reading your post lm feeling more positive,informed and cheery.Have a lovley 🐣Easter weekend.

Adiewon

[Wyebird]

I understand your concerns and I really feel miffed about the situation. I enrolled to participate in Covid drug trials. I had a call and because of my medical condition I wasn’t eligible. Surely they need guinea pigs like us to give answers you require.

[Borage]

Would it be a good idea for Covid-19 antibody tests to be taken with our regular MPN bloods?

[Runner999]

Looks as if I will be getting an antibody test after responding to a Biobank request. - Missed out a few months ago!