Living in the USA with CLL and want to know wh... - CLL Support

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Living in the USA with CLL and want to know where to sign up for your COVID-19 Vaccination? A State-by-State List

AussieNeil profile image
AussieNeilAdministrator
15 Replies

From MedPage Today: Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.

medpagetoday.com/infectious...

CLL Society's Official Statement:

Should I get the vaccine? Which vaccine? CLL Society’s Official Statement Concerning SARS-CoV-2 Vaccine in CLL patients

healthunlocked.com/cllsuppo...

Here is the official statement you can download for your doctor/specialist, which states "Both (Moderna and Pfizer) vaccines are safe and effective. You should plan to receive whichever vaccine is available through your doctor."

cllsociety.org/wp-content/u...

If you are on IVIG or subcutaneous IgG, Dr Furman's advice is to make no change to your infusion schedule in his post to the CLL/SLL Groups.io community, groups.io/g/CLLSLL/message/...

Also from the CDC; cdc.gov/vaccines/covid-19/i...

For persons receiving antibody therapies not specific to COVID-19 treatment (e.g., intravenous immunoglobulin, RhoGAM), administration of mRNA COVID-19 vaccines either simultaneously with or at any interval before or after receipt of an antibody-containing product is unlikely to substantially impair development of a protective antibody response. Thus, there is no recommended minimum interval between other antibody therapies (i.e., those that are not specific to COVID-19 treatment) and mRNA COVID-19 vaccination.

The CDC also updated their advice on 21st January, noting "that mRNA COVID-19 vaccines can safely be given to persons with evidence of a prior SARS-CoV-2 infection", per this update from gardening-girl : healthunlocked.com/cllsuppo...

cdc.gov/vaccines/covid-19/i...

Lots of other good information there, plus the CDC webpage should be updated as other COVID-19 vaccines are approved.

If you are in treatment, or have had treatment with Rituximab, Obinutuzumab, Ofatumumab or other anti-CD20 monoclonal antibodies within the past 6 months, you are less likely to produce an antibody response to a vaccination, but it is expected that you will still develop some T-cell based immunity response that should lessen the seriousness of a COVID-19 infection.

Remember that it takes at least one to two weeks in healthy people before an antibody response is achieved, so it is very important to continue to practice preventive behaviours of social distancing, mask wearing and hand washing for at least that time and ideally until we know more about how those with CLL respond to vaccinations. Keep an eye out for updates from members who have been able to have their antibody response measured.

Thanks to wizzard166 healthunlocked.com/cllsuppo..., here is the Dana Farber recommendation:

Vaccines for Cancer Patients and Survivors: What We Know

Key Takeaways:

- There is no reason to believe the COVID-19 vaccine will be any less safe for those with cancer than those without. For this reason, Dana-Farber recommends that both cancer survivors, and active patients on therapy, should receive the COVID-19 (vaccine) when it is made available to them.

- Severely immunocompromised cancer patients, such as those who recently received a stem cell transplant, should receive the COVID-19 vaccine, but they should discuss with their oncologist the optimal timing to receive the vaccine.

- Dana-Farber is monitoring developments in the COVID-19 vaccine process extremely closely. Care teams remain sources of support and information for patients who may have questions during this stressful time; keep in mind that some questions remain to be answered.

- Remember: Vaccines are safe and effective ways of preventing you from getting sick from various diseases and viruses.

Note the next sentence after those Key Takeaways:

Are you up to date on your vaccines? It’s a seemingly simple question, but it is very important. Vaccines are one of the most convenient and safest preventative care measures available, and staying up to date on your vaccinations (such as the flu vaccine) helps prevent yourself from getting sick. (My emphasis)

This simple message is so important, that we cover which non-live vaccinations we should have, due to our immune compromised status, in this pinned post: healthunlocked.com/cllsuppo...

Note that only two countries are developing COVID-19 live vaccines; India and Spain. The Oxford/AstraZeneca AZD1222 COVID-19 vaccine is approved in the UK, Argentina, El Salvador, India, Mexico, Bangladesh, Dominican Republic, Pakistan, Nepal and Brazil and is likely to be approved within days by the European Medicines Agency. It is being manufactured in Australia, anticipating approval there. AZD1222 uses a harmless chimp cold virus that cannot grow inside human cells, to transfer the SARS-CoV-2 virus spike genetic material, so we can make antibodies to block the coronavirus spike from breaching our cell walls, thereby preventing infection.

Our members have shared their vaccination experiences here:

healthunlocked.com/cllsuppo...

More than 200 vaccines in development, some focusing on mutant strains and older people, 52 in clinical trials

healthunlocked.com/cllsuppo...

This is an unlocked post for obvious reasons.

Neil

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AussieNeil
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MsChief profile image
MsChief

Hello Neil. I live in Connecticut, USA. This week the State is vaccinating people 75 and over and also teachers and health care workers. I filled out all the paperwork for my husband and me. We went to the St. Francis site yesterday. We received the first of two Pfizer doses. We received a card stating the lot number and expiration date of the vaccine. They were extremely organized- after the injection which you guys call “the jab” we had to wait 15 minutes to ensure we had no reaction. My husband has a slightly sore arm - I (the CLL patient) have no reaction. Best to all.MC

Jm954 profile image
Jm954Administrator

That's really helpful Neil

bennevisplace profile image
bennevisplace

Excellent, thanks.

cllady01 profile image
cllady01Former Volunteer

Neil, thank you for all this work you do.

I have called the number given for my county and while the site for my state says vaccines are available, the tricky thing is that there is no date given and the news is that there are no spots for the current dosages that are said to be the last on hand until after January 31.

The person I talked to to sign up said, "thank you for calling, and the ball is now in the State Health Department's ballpark."

I was told I will get a phone call and will then be told where I can go for the vaccine.

All counties that have vaccine are listed as having a limited supply and there are at least 4 counties without any vaccine available. No dates are being placed on the various postings of the health department, so who knows what is current or old? Very frustrating.

Jonquiljo profile image
Jonquiljo in reply to cllady01

From what I have read, most states and counties are totally in the dark about supply, delivery, quantity, etc.

What I have read is that the new federal administration is working hard to clean up the mess - and let everyone know what to expect at all times. Supposedly they are trying to inject many billions of dollars into “the system “ to facilitate more transparency and speed up vaccination capability.

This is supposedly a high priority event and the “state-county” micromanaging of the vaccinations will have a good deal of federal support - both financial and physical. We may have a lag period, but it is expected to fix this problem soon.

I am in California and the “available vaccines” database shows very little available for distribution here. There is nothing to be found in my county. But I think that will change in a few short weeks.

I have hope, and that’s something I rarely have! As someone over65 myself, I expect that relief will eventually arrive.

Mystic75 profile image
Mystic75 in reply to cllady01

It's been a bit of a mess in NJ. The process was rolled out based on an expectation of being provided the vaccines, which have not been forthcoming for the most part. So now the process is like a multi-car pile up on the freeway.

cllady01 profile image
cllady01Former Volunteer in reply to Mystic75

Excellent description of how I envision the situation, also.

Mystic75 profile image
Mystic75 in reply to cllady01

:)

DebKat999 profile image
DebKat999 in reply to Mystic75

Yes, perfect description of NY as well. Hopefully, things will begin to slowly get better now.

D x

Mystic75 profile image
Mystic75 in reply to DebKat999

Hi Sweetie x

DebKat999 profile image
DebKat999 in reply to Mystic75

Hi Di :) x

BallparkChaser profile image
BallparkChaser

Nice work again Neil. Thank you.

Kansas has placed Cancer patients in Group 3 as “Aged 16-64 with severe medical risks”. We are in line - but right behind 65+, High contact critical workers (grocery) and congregate settings (prison population). March is current best guess for start of our group.

Jonquiljo profile image
Jonquiljo

Someone has to - and will - come out with a consistent plan across all states. This is one big confusing and contradictory mess.

They have to deal with “high risk” populations first - not grocery workers, etc. Dealing with high risk first stops a lot of deaths. It seems that certain states have different priorities.

I am lucky to be over 65 - but if they bundle us with “high contact critical workers”, lots of us will die by the time we get vaccinated - which could be the summer.

Johnson & Johnson is about to apply for FDA approval. Their vaccine will be a single shot vaccine. It could put us over the top if only someone can figure out what was done prior to last week in vaccine distribution. See ...

nypost.com/2021/01/22/one-s...

For instance some people here in California report they are running out, and others report that the state is dead last (50th) in vaccine distribution. Which is it?

Phil4-13 profile image
Phil4-13

I’m in southern Louisiana. Notified today by text my Feb. 2 appt. for COVID vaccine is postponed. I will be notified of a new appointment, WHENEVER! It is definitely a “circus” over here. Thank goodness I don’t have any anxiety. It wouldn’t do any good! Sandra🙂

AussieNeil profile image
AussieNeilAdministrator

"The United States is nearly 6 weeks into its historic campaign to vaccinate Americans against the virus that causes COVID-19, and so far, the two vaccines in use look remarkably low risk, according to new data presented today at a meeting of vaccine experts that advise the Centers for Disease Control and Prevention.

With 23.5 million doses of the Pfizer and Moderna vaccines now given, there have been very few serious side effects. In addition, deaths reported after people got the vaccine do not seem to be related to it.

The most common symptoms reported after vaccination were pain where people got the shot, fatigue, headache, and muscle soreness. These were more common after the second dose. In addition, about one in four people reported fever and chills after the second shot."

mhttps://www.mdedge.com/rhe...

Jeff/Justasheet1 and his wife both experienced the fever and chills after their second shot:

healthunlocked.com/cllsuppo...

Neil

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