CLL consultation

[Divisidero]

It is a year ago since I posted to this wonderful site. I do look every day, sometimes for two minutes, sometimes for 20 minutes. The warmth, support and information is always uplifting.

I have been watch and wait for 5 years now. I am 13q deleted, and mutated. CD38 negative. I am now 75. I am in Hampshire UK. I feel fit and well; my only issue is tiredness - but this could be just age?

I am on the Oxplored research programme run by Oxford University at the Churchill Hospital. The aim of the research is to identify why about 30% of the CLL population never need treatment.

I had my consultation on 7th November. The results were, with last year in parenthesis:

Hb 140(136)

White cells 16.7 (14.9)

platelets. 253(253)

neutrophils 2.7 (3)

lymphocytes 13.4 (11.3)

immunoglobulins normal

I had to cancel all travel plans last year at this time because of prostate cancer investigations - all came out completely fine. I am going to Brazil at the end of the month - not the Amazon. I had a yellow fever vaccination 30 years ago.

I know this site has a post on travel insurance which I guess I can easily find?

I am grateful for any comments and advice. I wish everyone well.

Divisidero

[Newdawn Administrator]

Hi there, here’s a link to a post I did some years ago on various insurance companies.

It’s not pinned so not easily found.

healthunlocked.com/cllsuppo...

You look to be in great shape with your CLL….very impressive figures! I use StaySure for my travel insurance and in your case it may be an age related difficulty you’ll experience more than the condition.

Good luck and enjoy your trip 😊

Newdawn

[Divisidero in reply to Newdawn]

So incredibly kind of you to reply.

I have on old insurance document in my files from staysure.

Thanks again for your reply and the amazing job you and all the administrators do on this forum which I check every day no matter where I am.

[GMa27]

My Dad had CLL for 30 years & never needed treatment. Lived to 94. At 93 the hematologist said well I think he may finally need treatment....but we skipped that. He had heart issues & eventually that caught up with him. I was on W&W 12 years before I needed treatment. I am also 13q mutated but I was under 65 and got 3 cycles of FCR. 5+ years in remission & doing well. Love to hear results of that study.

[Divisidero in reply to GMa27]

I am so moved that you have written and so positive for me. It was also moving to read about your dad. I sometimes wonder whether I should have even told my four children as they were worried and probably still are even though I tell them that I think I will be ok.

I am pleased to hear that you are doing well and I hope you continue to do so.

Thanks again for writing.

[GMa27 in reply to Divisidero]

I was an adult when he was dx. I probably would not have told children under 25. Between college or teen years, I would have been worrying them. I felt fine & still do. Didn't tell my Dad cuz I didn't want him to feel guilty & back then we didn't know it could be hereditary. My mom found out by accident & was devastated. I reassured her I was fine. She passed away before my chemo. That was the only comfort. My Dad had passed 10 months before my mom did. I really think she died from a broken heart.I get it now cuz unfortunately my hubby died from pancreatic cancer. We had 3 week notice. It was shocking.

[Sanders9 in reply to GMa27]

So sorry to hear about your husband. Pancreatic Cancer is brutal my Dad died of it

[bennevisplace]

Divisidero, you seem to have an indolent version of CLL, and who knows you might be one of those ~30 percent never to need treatment.

There are several UK travel insurers catering for us wrinklies with health issues. Google age uk travel insurance to generate a list. One I have used in the past is allcleartravel.co.uk/senior...

[Divisidero in reply to bennevisplace]

Thank you so much.

All noted .