Two years CLL anniversary

[Muddywater]

Haven’t posted in a while but I continue to drop into the chat to keep abreast of what’s happening. Anyway I just wanted to share that it was two years ago that I started treatment with Acalabrutinib and since then by quarterly blood tests have remained ‘stable’. The initial fatigue I had quickly waned and in that first year I walked 16miles in a Relay for Life event helping to raise funds for UK Cancer Research. Last year I took part again and walked 25miles!

I live a pretty normal life but with all the usual precautions of staying away from crowded places and using copious amounts of hand sanitiser etc..

The Acala is doing it’s job - for how much longer I do not know - but I’m content that I made the right decision (for me) to choose it as my initial treatment pathway.

So, two years in, I’ve decided to book a holiday in Spain, something I’ve always been a bit nervous about, but feel ready now to take the plunge. Not having much success finding travel insurance that doesn't cost silly amounts but I’ve got some ideas from this forum to chase up yet.

I know our CLL journey is very individual but the available treatments (and those in the pipeline) can really make a big difference.

This CLL can be scary when you are first diagnosed but stay positive, lean on the shoulders of the knowledgable contributors to this forum, choose the path best for you -and drink lots of water!

[B13532]

Thx for your post. Hubby diagnosed with CLL last Nov. On Calquence that gives him terrible arm rash & bruising & swollen hand. His earring is a little clogged but allergy med helps plus ordered new hearing aids. Sure hope bruising goes away but platelets at 119 still low plus 127 WBC. Guess a long way to go.

[Fowey2009]

Pleased to hear that acalabrutinib is working for you. My husband has had various treatments over his 13 years of CLL, but says that acalabrutinib is by far the best one for him so far. Last year we travelled round Italy by train for a month and this year we are walking the Camino from Porto to Santiago de Compestela.

We recognise that travel insurance will be expensive so we always build that into our travel budget.

(And we ALWAYS wear masks on the plane - started that pre-covid and it seems to work for us).

Enjoy your trip

Beryl

[Agfar]

I know you can get Travel Insurance for Europe with or without Spain because Spain is expensive for medical treatment. Portugal is lovely and also cheaper!

[Nucleusman]

fully endorse your sentiments and treatment path my only symptoms have been bruising and told to keep out of the sun cos of skin cancer so be careful on that Spanish trip- I paid £700 for one weeks travel insurance but other underlining conditions

[Sunrisejoy]

Well stated and wonderful to know! Spain sounds lovely! Thank you for update as I begin this sunday on Acala as well.Take good care !!

SJ

[Catlove71]

Hello, I’ve been on Acalabrutinib for 18 months. Initially had mild bruising and a very short bout of neutropenia which resolved quickly on decreasing to only 1 pill per day. I am very happy to be on this treatment.

My WBC fairly quickly reduced from 109,000 to 4, then 7-9 and now on 1 pill per day stays between 11 k and 14k, palpable nodes are gone or markedly decreased in size and my lymphedema of legs and horrible night sweats quickly disappeared.

I was so scared of starting treatment but I would now advise…” just do it” if treatment is recommended by your physician and you’ve researched it somewhat… I feel far Less anxious about the CLL now that I’m feeling better on the med. I hope my good results will last … I too would like to travel a bit but to stay within the USA to start.

Good wishes to all starting on meds…

[Danie50]

thank you! I'm soo happy for you!🤗🤎🧡