Vaccinations....do they work for CLL Patients???

[AAli]

Hi All,

Any idea that pneumonia, flu and hepatitis vaccinations work for CLL patients? Or if you are familiar with any other vaccinations/medicine to increase immunity.

Best wishes

[AussieNeil Administrator]

AAli, their effectiveness decreases with age and CLL progression, so get up to date with your non-live vaccinations now. I'd also argue that even if there's a high likelihood that they won't work, the risks are so low with vaccinations (unless you have an allergy to a component in the vaccine), that it is still worth having them. Being vaccinated may give you enough protection to reduce the severity of any infection you do have and thereby lessen the chances of you becoming ill from secondary infections. Also (and this is speaking from my personal experience), in the later stages of CLL, infections take significantly longer to get over, so it is easy to become run down. Fatigue becomes a major problem, your fitness dramatically worsens and can take a long time to rebuild. Quality of life becomes disappointingly low so that every day can be a struggle. (You'll also be a poorer candidate for successful treatment if you don't maintain your fitness.)

Finally, how can you expect your family, friends and acquaintances to have vaccinations (which will also protect you) if you don't have them?

Read Len's comprehensive summary on vaccinations here:

healthunlocked.com/cllsuppo...

Neil

[AAli in reply to AussieNeil]

Thanks Dr. Neil I will go for Pneumonia and hepatitis vaccinations COB today.

[AussieNeil Administrator in reply to AAli]

Doctors study and train extremely hard to understand an incredibly complex and ever growing and changing fiield. While I appreciate your complement, save the honorarium of Dr for those that have earned it through years of hard work and training. I've just read a fair bit about just one extremely small fraction of what it takes to become a doctor - and then forget much of what I read... I have no medical qualifications but do know enough to tell you to NEVER take any medical advice from anyone that doesn't have the qualifications and experience to gain registration as a doctor. Further, you really need to have an appointment with a doctor in person so that they can use their training to determine the best course of treatment for you - even if that treatment is watch and wait. The value of support forums like this one, is that you can learn from others that have gone through what you are going through, so that you know the right questions to ask your doctor. Then they can use their knowledge and experience to provide the best medical care for you. A major reason why you should never accept medical advice even from a doctor over the internet, is that a doctor needs to find out your medical history and assess your present health as part of the diagnostic process. People never volunteer all the important facts when asking for medical advice - they don't have the training to know what's important. It takes a doctor's training to know what questions need to be asked. Seeing you physically and often doing a physical examination are also a very important part of the assessment process and we still can't do that over the Internet.

Good on you for arranging your vaccinations today. Just remember to always ask if the vaccinations you will be given are not live or attenuated vaccines. Some vaccinations are available in a number of different formulations and what's available changes over time and by country. There are live attenuated hepatitis vaccinations so you need to check this carefully.

All the best,

Neil

[CClaver27 in reply to AussieNeil]

Very well said Neil...

[lankisterguy Volunteer]

AAli asked: "Vaccinations....do they work for CLL Patients???"

The experts say that sometimes vaccinations do work for us, but not always or extremely well, so you should be tested afterwards to see if your immune system has responded. With some of the vaccines, having several inoculations may be required.

Even if it is a hassle, getting your immune system to wake up is very critical to your longevity. Many CLL patients succumb to pneumonia or other common bacterial. fungal, or viral infections.

As Neil says- we are not doctors, but you can be an assertive patient and get your own doctor to pay attention to your immune compromised condition and work hard to compensate for your lack of immunity.

Len

[CClaver27]

I have heard previously from 1 Doctor that CLL patients should avoid the Shingles vaccine. There is a big push in the US for people over 60 to get this vaccination and compromised immune systems should avoid. Anyone else get this advice?

[AussieNeil Administrator in reply to CClaver27]

That doctor is absolutely correct. The shingles vaccination is an attenuated live vaccination and CLL patients should not have it - it's too risky.

[sunshine35 in reply to CClaver27]

My doctors also don't give the shingles vac to CLL patients. Live vaccine. I receive IVIG treatments monthly and they have kept me from the constant

battle of infections. The fatigue as Neil mentioned does get worse as time

goes on. I'm in Connecticut. Have a Good day ! BJ

[lankisterguy Volunteer]

So first, the ones we should NEVER take are live vaccines like Shingles this is reinforced by this 2010 comment from Terry Hamblin: "CLL is different from other leukemias. A complete remission does not restore immune competence. Patients with CLL are immunocompromised from diagnosis until death." Terry Hamblin MD FMedSci

The CDC comprehensive position paper is found here: cdc.gov/mmwr/pdf/rr/rr6002.pdf

Page 19 starts the discussion for immunocompromised patients

Page 21 has this statement:

Vaccination with Live, Attenuated Viral and Bacterial Vaccines

Severe complications have followed vaccination with live, attenuated viral and live, attenuated bacterial vaccines among persons with altered immunocompetence (137–145). Persons with most forms of altered immunocompetence should not receive live vaccines (MMR, varicella, MMRV, LAIV, zoster, yellow fever, Ty21a oral typhoid, BCG, and rotavirus).

This is what LLS says on their website: • In general, patients undergoing cancer treatment are advised to receive a flu shot rather than the nasal mist form of the flu vaccine. Shots are safe for people with compromised immune systems because they are made from inactivated virus; the flu mist is made from a live virus.

Thanks to Chris Dwyer for posting this at Health Unlocked historyofvaccines.org/conte...

That is a more specific comment on Hepatitis vaccines clarifying that they are NOT live vaccines but Subunit and Conjugate Vaccines so they are safe for us CLL patients.

Len