CLL - WATCH & WAIT

[jane1301]

Hi All

I’m a newbie, just recently diagnosed with CLL. After being diagnosed, I contacted my dr to ask if it was alright to travel to Cambodia & Laos, also have the necessary vaccinations. They were unaware of my condition. In short, after ringing several times , it was a month before they sent a letter out. When I asked who my consultant was there reply was “it’s whoever you see on the day”

And to contact the CLL support group for any other information I needed and will see you in 3 months. CLL support group contacted me and said I should see a CLL Specialist not just a haematologist and to seek a referral to see peter Hilman at Leeds general infirmary. Also I should be arranging to have pvr 13 followed by p23, plus flu and meningitis. Apparently recommended to have shingles vaccination, but the non live vaccination not available on nhs, only available at one private clinic in London. How should I proceed, my dr won’t agree to give me the vaccinations until the haematology dept confirm I should have them. Didn’t realise I should be taking the “WATCH & WAIT” so literally! I want to be proactive with my health and stay well as long as possible. Sorry for rambling! Any advice for me - please?

[2003UK]

Hi Jane, you must be in complete anxiety and shock and I found my head was all over the place when I was diagnosed. In retrospect I wish I had just given myself time, you have landed in an alien universe with a whole new language. Please do not apologise for you thinking you are rambling, I was all over the place with my thoughts and feelings on high alert for ages. I am so glad you have been referred to the CLL support group. There is also the Leukaemia Care support line which is free from UK landlines and mobile phones:

Email: [e-mail]

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm

You have been given so much information to take in and I am so impressed you have remembered so much of it, my mind certainly did not at your stage. I won't get into the medical side but I have been told to ensure I do not have any live vaccines. Unfortunately I contracted the shingles. Watch and wait is just active monitoring and just a method of seeing how the CLL progresses. Your regular blood tests, with any tests or symptoms you might have, are used to asses the progress of the condition. I have been a very lucky girl and I have been on watch and wait for 15 yrs, without any treatment. Unfortunately if you have received a medical diagnosis you probably need to tell your travel insurance company and you have to shop around insurance as some pre-existing conditions whip the premiums up. Leukaemia care or the CLL support group might be able to refer you to specialist lists of insurance companies. Be kind to yourself and treat yourself and keep posting.

[jane1301 in reply to 2003UK]

Hi thank you for your reply. It helps enormously that there is support out there. Most of all, I feel I can talk about my illness on a forum. Stay positive everyone!

[JigFettler]

Hi Jane. Welcome.

You are right to be health proactive. To learn all you can about CLL.

In addition 2003uk's advice to contact Leukaemia Care, above, join the CLLSA healthunlocked forum as well. 13,000 members world wide, lively, friendly, fun, informed.

There is quite a lot to do to keep well. Infection protection is so important.

Having CLL imparts poor immune response.

Travel is an issue. Going to certain countries may not be a great idea. Increased infection risk, poor medical services.

All best wishes.

Jig.

[jane1301 in reply to JigFettler]

Hi JigFettler

It certainly puts a different perspective on life. To look after myself, be positive and live for today. I no longer need to save for an extension or have a new bathroom suite. Stop doing all the overtime. Instead, go see that old friend you never seem to have time for. Allow my self more time to absorb the science behind CLL. Keep posting guys, we all need this. Thank you

[jijic]

Hi Jane -

I travel a ton, and I'll be honest - I've had the flu and the pneumovax vaccines, but I haven't done the shingles or meningitis ones (they're uncommon and hard to get in Germany, plus you have to pay out of pocket regardless of need). It doesn't look as though those jabs are specifically required for Cambodia/Laos, so traveling without them should be no different than staying home without them!

As for travel in general: I say, if you feel well, don't hesitate. Life's too short. Since my diagnosis two years ago (and I've been getting progressively worse in terms of blood counts, though still feeling fine), I've been to at least fifteen countries (mostly for work, but some for fun!), including several in Africa. Just take extra precautions, especially around handwashing (and wiping down your airplane tray!), carrying meds you might need, and having insurance, and you should be fine.

[jane1301 in reply to jijic]

Hi As long as I don’t have the live vaccine, I can have the rabies, Hep A etc. I was booked to travel on a small guided tour in November. Unfortunately, the tour company may have to cancel as only ourselves booked! Presently in Portugal, researching and making a list of other trips I can go on. May have to put the shingles vaccine on my Christmas list £500 at a private clinic, although currently out of stock.

[jijic in reply to jane1301]

Yes, same with me on the vaccines of course. Fortunately, I had the yellow fever and other serious ones before my diagnosis, so there are precious few countries that won't let me in. My top travels in the past two years have been to Colombia and Georgia/Armenia, and we're looking into the safety of going to Uzbekistan and Kyrgyzstan next year.

P.S. You might consider looking into the cost of Shingrix in mainland Europe or elsewhere in your travels - 500 GBP is much higher than the cost in Germany and the US!