Advice on vaccinations: Hi! I am newly diagnosed... - CLL Support

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Advice on vaccinations

Saska-Jul31 profile image
16 Replies

Hi! I am newly diagnosed with CLL, on 6 monthly blood tests, on Watch and Wait and apart from occasional fatigue am doing OK.

Before having any idea of my CLL we had booked a holiday to The West Indies next January. What concerns me is that I may need vaccinations and I've read that we can't have " live" vaccines. A friend who went there had One for Heparitis A.

I would be grateful for any advice, we have paid the deposit and stand to lose that if we have to cancel because I can't have the vaccines.

Bless you all, I am so grateful for this forum.

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Saska-Jul31 profile image
Saska-Jul31
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16 Replies
Kwenda profile image
Kwenda

You do not specify which island in the Caribbean that you are visiting and there are some BIG differences. Some islands are frankly dangerous due to the spread of all kinds of tropical diseases let alone the violence levels.!

I lived in the Caribbean area for many many years and can offer further information if you private message me via Health Unlocked.

In the meantime there are various dangerous diseases spreading via the mosquitoes. The well known one being the Zika virus, which while devastating for any pregnant woman, also has other lasting effects for ANY man or woman.

Added to that we have the Chikungunya and Dengue viruses which can have some very long lasting effects similar to malaria. Locally these are known as ‘ Break Bone Fever ‘ as in all your bones ache.

I list below various references for your further reading.

Chikungunya and Dengue

Those contemplating a Caribbean holiday or cruise should take careful note.

healthunlocked.com/cllsuppo.....

healthunlocked.com/cllsuppo....

medpagetoday.com/Infectious...

medpagetoday.com/Infectious...

newsroom.doh.state.fl.us/wp...

healthunlocked.com/cllsuppo...

jama.jamanetwork.com/articl...

Dick

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toKwenda

Just wanted to add.... if this is a cruise, you may want to factor in Norovirus, which was been known to be associated with cruise ships... it can be serious, and more so in CLL patients with compromised immune systems as a few on this website can unfortunately attest too...

The CDC monitors outbreaks on various vessels but only to and from U.S. ports..

cdc.gov/nceh/vsp/pub/norovi...

cdc.gov/nceh/vsp/surv/gilis...

~chris

Loves2walk profile image
Loves2walk in reply toCllcanada

Oh boy....we were thinking of a cruise for our anniversary next year. Hadn't even thought of that darn norovirus. Thanks for mentioning it. So much to consider now. :(

Saska-Jul31 profile image
Saska-Jul31 in reply toCllcanada

Thank you, yes I'd forgotten norovirus.

Saska-Jul31 profile image
Saska-Jul31 in reply toKwenda

Thank you, will look into all this.

Kwenda profile image
Kwenda in reply toSaska-Jul31

See also this link to a new HealthUnlocked post.

Major new research is ongoing at Leeds University in the UK, as well as numerous other research facilities, due to the sudden rapid spread of these dangerous mosquito born viruses.

The movement of people around the world either by plane or cruise ship has caused the spread of dangerous viral diseases to places that used to be disease free.

Diseases that were previously only seen in remote corners of the world are now spreading worldwide.

healthunlocked.com/cllsuppo....

Dick

Cammie profile image
Cammie

Whilst the advice given so far is good the only real thing to put your mind at rest would be to talk to your consultant.

I was forced to cancel a trip to Grenada earlier this year as I could not get travel insurance because of cll treatment 1 year ago. The lowest quote was £2800 for 14 days which was ridiculous. I decided not to risk it!

You may find depending upon your current status that all will be fine and you can enjoy your trip but certainly check with the medics.

Kwenda profile image
Kwenda in reply toCammie

While I totally agree that one should check with a medical team I also say that many of the GP's and some oncologist / haematologists are NOT up to date on ALL subjects.

An haematologist working perhaps in the UK is not perhaps the best person to ask about Chikungunya and it's affects upon a person who is already immune system compromised.

Much better I feel is to fully research the subject on the numerous government or university research pages and, armed with copies of this up to date research, then talk to your medical team.

I have personal experience of, shall we say, educating my haematologist.!!

Dick

Cammie profile image
Cammie in reply toKwenda

Accept that too Dick done it myself but you also need to take advice from those in charge of your condition. Even if you have to research first.

Kwenda profile image
Kwenda in reply toCammie

A small but important point, and don't take this as a criticism of your reply..

The words used were ' from those in CHARGE of your condition '..

I am in TOTAL charge of my condition, and my own health.

I jointly work with experts to assist me with my medical condition. If I strongly dissagre with any heamatologist or oncologist I would ask them to explain, or to convince me that they are correct. Then if I am unconvinced, I then seek another heamatologist or oncologist.

A dictatorial oncologist is dangerous since the research moves at a very fast speed and it must be exceedingly difficult for any oncologist to see patients and still have time to read ALL the research papers.!!

That is why we are lucky on these forums to have people like Chris who takes the time to keep us up to date with this latest research. He follows on from the late great Dr Terry Hamlin who so generously provided his research and time to the CLL community.

Education is the key, so that patient and oncologist both work together.

Dick

Cammie profile image
Cammie in reply toKwenda

Accept all you say Dick I agree!

Saska-Jul31 profile image
Saska-Jul31 in reply toCammie

Thanks, I have been discharged by the hospital and am only on 6 monthly blood tests at the moment. Watch a d wait, no treatment.

Your insurance quote was impossible, the price of another cruise!

Saska-Jul31 profile image
Saska-Jul31 in reply toSaska-Jul31

Well done! I'm pleased you got to China and did so well.

If you booked the holiday before any diagnosis and paid travel insurance at that time the insurance company will accept the risk. They will cover you for that trip. But now they know you have CLL expect big rises in travel insurance fees. My consultant didn't want me to go to China on holiday. I did being very careful with food and hygiene. I've walked the Great Wall of China!

richardp profile image
richardp

Have been on watch and wait for 18 months and in that time have been lucky now to take several holidays including three to the Caribbean. We do actually have all the vaccines prior to CLL but are you sure that Hep A ( which is actually recommended in many countries ) is a live vaccine as I saw in an article that is not. As suggested elsewhere chat to your medical team. A lot depends on which country you are going to and what type of hotel you are staying at. We are always more concerned about mosquitoes and Zika - most reputable hotels have a spraying or fogging programme at least weekly but it is sensible to check. Always have plenty of anti bacterial wipes.

Hope you get there and enjoy yourselves !

Saska-Jul31 profile image
Saska-Jul31 in reply torichardp

Thanks, that's good if the Hep A isn't live.

We are on a cruise with a very reputable company.

A friend who did the same cruise protected herself against mozzie bites by taking antihistamines and vitamin B12 tablets for a few weeks before she left and always covered up well on trips to the Rain Forest. She wasn't bitten at all. So will try that.

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