The US CDC ACIP (Center for Disease Control – Advisory Committee on Immunization Practices) provides specific vaccine recommendations for people with blood cancers and immune compromised conditions*.
That would be us, as we are all immunocompromised to some degree, likely for years before we are even diagnosed with CLL.
Those recommendations are in Table 2 Column 2 [Immuno-compromised (excluding HIV infection)] on this page: https://www.cdc.gov/vaccines/schedules/hcp/imz/adult-conditions.html#. You can also download a PDF version of this table here.
Here is a link to share with your doctor or other healthcare providers: https://www.cdc.gov/vaccines/schedules/hcp/resources.html
Here are the main pages for all vaccines: https://www.cdc.gov/vaccines/hcp/acip-recs/ https://www.cdc.gov/vaccines/hcp/acip-recs/vacc-specific/index.html
This all may seem a bit complicated, but the bottom line is:
- Vaccines are important and appropriate shots should be given soon after diagnosis as our immunity doesn’t usually get better with time.
- No live vaccines such as MMR or yellow fever or the old zoster vaccines and others.
- Get the annual flu jab.
- Follow the protocol for the two pneumonia vaccines.
- Ask your doctors about other vaccines and stay up-to-date with your immunizations.
The NIH is doing two free vaccine trials now for the new Shingles (Zoster) and the hepatitis B vaccine. For more information see: https://cllsociety.org/2019/04/two-new-free-vaccine-trials-at-the-nih/
*Here is the specific wording for CLL patients for Pneumonia vaccines which are different from adults with normal immune function: “Age 19 years or older with immunocompromising conditions (congenital or acquired immunodeficiency [including B- and T-lymphocyte deficiency], ….. leukemia, lymphoma, Hodgkin disease, ….): 1 dose PCV13 followed by 1 dose PPSV23 at least 8 weeks later, then another dose PPSV23 at least 5 years after previous PPSV23; at age 65 years or older, administer 1 dose PPSV23 at least 5 years after most recent PPSV23 (note: only 1 dose PPSV23 recommended at age 65 years or older).
I want to thank Len Keck, the co-facilitator of the New York City CLL Society support group, for taking the lead on this for American CLL patients.
For our friends in Europe and Australia, the information is quite similar and some of the information is simply a repeat of the CDC links above but presented in a slightly different format. Thanks are due to Paula S and Jackie Martin from Health Unlocked for this helpful review:
Infections are the biggest killers of CLL patients, so vaccinations are very important. If we have them early in our disease, we are more likely to be able to produce antibodies and so they are more likely to be effective. The following are those commonly recommended by CLL experts:
1) Annual flu vaccine. Have this as early in the season as possible. It’s usually available from mid-September each year (in the UK). It’s also important that our nearest and dearest have the jab. They’ll get better responses than us and if they don’t get flu, they won’t give it to us. In the UK, partners and carers are entitled to have flu jabs on the NHS.
NOTE that children who are vaccinated are given ‘live’ attenuated virus via a nasal spray and that these children shed the virus for a few days afterwards, perhaps up to a week. Public Health England have stated that this virus is less able to spread from person to person and is shed at levels unlikely to cause infection. However, CLL patients can be severely immunocompromised and it may be prudent to avoid children who have been vaccinated for the period during which they are shedding the virus.
2) TWO Pneumonia vaccines – first Prevnar 13 (PCV 13), then at least 2 months later – Pneumovax 23 (PPV 23 – also known as PPSV23).
Although “The Green Book” (official UK source for vaccination advice) recommends a gap of at least two months between these vaccs, some doctors prefer to wait longer.
Prevnar13 has only recently been put on the recommended list for CLL folk, and some GPs are not aware of this as it used to be only for infants. If you’re offered a Pneumonia vaccination for the first time, make sure it is Prevnar 13 (PCV13).
If you’ve already had Pneumovax (without having had Prevnar), you can still have both the vaccinations BUT when they’re given in this other order a longer gap is recommended, usually 12 months, between the vaccinations.
Note – Sadly many CLL folk get very little response to Pneumovax 23 (a polysaccharide vaccine) but most people have a better response to Prevnar (a conjugate vaccine).
3) Haemophilus influenzae type B (Hib). HiB is a very nasty bug that can cause many infections including pneumonia and meningitis. The vaccine often comes as Hib/MenC, which is a combination of Hib and Meningococcal C vaccines.
4) Meningococcol C As mentioned above, Meningococcal C vaccine is often combined with the Hib vaccine (Hib/MenC). Vaccines for other strains of meningitis may also be recommended, such as Meningitis B and Meningitis ACWY.
5) Consider boosters for Tetanus/Diptheria/Pertussis (whooping cough), if it’s been over 10 years since you’ve had them.
6) Ask your doctor about possible Hepatitis vaccines.
You might benefit from other boosters eg Pneumovax (PPV23) is sometimes recommended every 5 years for some people (especially for those under 65 years of age).
Some doctors like to test for antibody levels to see if boosters would be helpful.
“LIVE” VACCINES SHOULD NEVER be given to CLL patients. Unfortunately, the present shingles vaccine is ‘live’ so NOT for us, but a new “non-live” shingles vaccine is in the pipeline that might be available in the next year or so). We should also be aware that we may need to avoid people who’ve had live vaccines and may be shedding the virus.
Check with your hematologist, in case there are other reasons why you shouldn’t have vaccines. eg. when certain treatments are imminent, taking place or during the 6 months afterwards.
Although we probably won’t get the best protection from vaccinations because our immune systems don’t work so well, most CLL specialists still recommend we get vaccinated. We sometimes respond much better than expected, even at advanced stages in our disease.
In short, ask your doctors about vaccinations for
1) Prevnar 13, then Pneumovax 23 at least two months later (for pneumonia).
2) Annual flu jabs (for you AND those close to you).
3) HiB/MenC (for Haemophilus Influenzae typeB and Meningococcal C).
4) Ask about vaccines for other strains of meningococcal vaccines, and for hepatitis.
5) Check if you need boosters for tetanus, diptheria, whooping cough.
6) Ask about Shingrix – the new non-live vaccine for shingles. Some doctors are holding back on this because it’s still new, but other doctors are encouraging their CLL patients to have it. It’s given in 2 separate doses, with a gap in between. Evidence is showing that Shingrix is MUCH more effective than the older live shingles vaccine (which we couldn’t have anyway).
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There are other vaccines that are permissible for CLL folk, but we don’t usually need all of them unless we face a particular risk of those infections. A full list is given here by the late CLL hero, Chris Dwyer. It starts by listing vaccines that should be avoided, but read down a bit to find the “Permissible” ones. healthunlocked.com/cllsuppo… The new shingles vaccine is okay, but check with your doctor first.
References: For the UK, the recommendation for Pneumonia vaccinations is in “The Green Book”. Go to Chapter 25, page 8, third paragraph. See the section starting: “Children aged 10 years onwards and adults diagnosed with other at-risk conditions.”
Go down to the next paragraph that says “Older children and adults who are severely immunocompromised* should be offered a single dose of PCV13 followed by PPV23 at least two months later (irrespective of their previous pneumococcal vaccinations). If PPV23 has already been administered, then wait at least six months after the PPV23 dose to give PCV13 in order to reduce the theoretical risk of pneumococcal serotype-specific hypo-responsiveness.”
“(*including bone marrow transplant patients, patients with acute and chronic leukaemia, multiple myeloma or genetic disorders affecting the immune system.” (Relevant bits put in bold – Ed)”
Another UK reference re pneumococcal vaccines is: nhs.uk/conditions/vaccinati… “…anyone with leukaemia; multiple myeloma; genetic disorders affecting the immune system or after a bone marrow transplant) usually have a single dose of PCV followed by PPV.”
This Irish site gives more detailed information for Pneumonia vaccinations, and also mentions some other vaccinations to be considered. hse.ie/eng/health/immunisat…
The following link is to the USA (Centre for Disease Control). It is clearly presented and covers many different vaccinations. cdc.gov/vaccines/schedules/…
Scroll down to table two and look at the line for “immuno-compromised”.
This is another US site that gives more details about timings of pneumococcal vaccinations.cdc.gov/vaccines/vpd/pneumo…
For Australia, see below (thanks AussieNeil) ncirs.edu.au/assets/provide…
Many thanks to Jackie (Jm954) for helping me edit this post (which was originally part of Coping Strategies Part One). healthunlocked.com/cllsuppo…
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P.S. The NHS has recently (2019) written new recommendations for vaccines. Scroll down to the section “Vaccines for people with underlying health conditions”
This document is helpful to convince GPs in the UK that as well as annual flu jabs, we definitely need the two different pneumococcal vaccines PCV13 (Prevnar13) and PPV (Pneumovax23). However, I was surprised to see that Hib/MenC and the other meningitis vaccines are only included in the categories for people with spleen problems, and for those with “Complement disorders of people receiving complement inhibitor therapies”.
I would be interested to know if some CLL patients come under those last two categories, and officially qualify for those extra vaccinations. I know that in practice, many CLL experts in the UK as well as America, do recommend the HIB and meningitis vaccines.
Paula