Going away whilst on treatment or getting close..

[Stavrou1]

Hi everyone one hope your all well and those who are struggling , sorry .

I don't post often as struggle still reading some post ,, I know there are many positives ..this site is wonderful & a comfort to us all that were not alone..

I am in W & W since being diagnosed in Sept 2020 had cll video call Wed, and now possibly could be starting treatment within a year ! Previously being told a long way to go !!! . In 2 months requesting genetics test tp53/17p deletion.

WBC 79 previously 61. HB 8.00 . I have a infection , started antibiotics Thursday , my dilemma is we sold our house and were planning to live in Italy and UK. Has any one on treatment gone abroad whilst on treatment before covid .. althou our plan was to drive . My health is always better . I expect not a lot of things have covered. Hope this makes sense ..am not good at writing well . 🤗

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[Alex830]

I would think if your CLL is causing your HB to be this low, treatment should start soon unless your infection is the culprit. If you travel by car you should be fine. Take the same precautions as you would at home. My concern would be access to medical services who are familiar with CLL while in Italy. My sister lives in Italy and while she has been able to get medical care when needed, she did say they definitely lack in modern equipment and facilities. She had a mammogram, before she retired she was in charge of a mobile mammogram bus, and said the X-ray machine was something out of 80’s.

[Stavrou1 in reply to Alex830]

Thank you for your reply and your concerns . Think have to put it on hold , and hope that one day will be living the dream . I will ask for more blood test once finish my antibiotics . The thing is i don't feel that unwell. I hate this living with this .

I have just read some your post and am so sorry your on this journey all ready and struggling. I send you big hugs and try and hang in there , hopefully things will settle down. Take

[Alex830 in reply to Stavrou1]

Thank you. Don’t think you have to give up on your dream, maybe just postpone it for a little bit. I asked my specialist if I could travel to Italy and even though he said not right now but when your blood is stable he would be ok with it.

[Stavrou1 in reply to Alex830]

Thank you again😊. I will contact Heomotolgist in a couple of weeks after more bloods with G.P . At the moment my next CLL appointment is secuduled for 3 months.

[rcusher]

I was on treatment with Ibrutinib and went to Thailand for a month, 2 years in a row. This was pre-covid. I made sure I had enough meds to cover the month and for 2 weeks after, should there have been any problems. At this time I was feeling good and my doctors didn't advise against it. I obtained health insurance to cover if needed, had no problem getting it because the big thing was " was my CLL stable for at least 6 months". I took covid protocols everywhere, on planes because it was a 22 hour trip even before they were in effect. I had no problems at all and was so glad I took the chance and went on this trip. Oh and one other thing I did take a Caribbean cruise during this time. Best of luck in whatever you chose to do, remember it's you you have to look after. Jack

[Stavrou1 in reply to rcusher]

Thank you for your reply , so pleased every thing went well for you , and great you got to Thailand 2 years running , I was stable in till recently 🤞may be infection is the cause. Need to look after myself which is important , so may be not risk it unless things improve , not hopeful.

😊

[thb4747]

Hi, I’ve travelled extensively while being treated with Venetoclax (though, sadly, not for the last 2.5 years 😢). I’ve been to Africa twice, Europe, Japan, Australia twice and to the Cook Islands. On several of these trips I was injecting myself with Filgrastim and having blood tests in exotic places — Johannesburg, Arusha, Zanzibar. I must add though that these trips were all pre-Covid. I’m not in a hurry to travel right now. In fact, just today I pulled the plug on a trip to the Cook Islands to celebrate my 75th birthday.

[Stavrou1 in reply to thb4747]

Hi thank you for your reply , love how you are living life to the full since being diagnosed and the positive attitude...sadly covid came a long and made life very difficult for us all Sorry you had to cancel your big birthday trip.. Your find a different way to celebrate..😊.

[thb4747 in reply to Stavrou1]

Thanks. Birthday sorted today. Small luxury lodge 3 hours drive away. Only 2 rooms. Being joined by son and daughter-in-law. Should be great.

[Stavrou1 in reply to thb4747]

That sounds lovely. Enjoy . 😊

[thompsonellen]

I am 17p deleted and started treatment in June 2016 and relapsed and started another treatment plan in Nov 2021. I have always traveled a lot for business and personally throughout my treatment, which has been continuous. That said, I assume HB is hemoglobin and that number is really low. Mine tanked to 5.5 in May 2016 because of bleeding which required hospitalization-transfusions propped it back up to 10. Also do know that both of the specialists I saw, including Dr. Byrd, did not wait for the white blood counts to get to the high numbers you see others post. I think I was at 60K the first time when treatment was recommended (it got to 90K while I was waiting the couple of months to do a trial) and when I relapsed, I was only at 18 (up from normal 6 months before). So I guess what I'm saying is if you were under my doctor's care, you'd probably be in treatment. But you will feel much better almost right away and you can travel without restrictions on ibrutinib or similar. Probably not what you want to hear but since I had this mutation when first diagnosed and I have access to a top doctor, I feel compelled to tell you my experience.

[Stavrou1 in reply to thompsonellen]

Hi thank you for your reply, thank you for sharing your journey . You really went through it..sorry to hear that, and' you managed to still continue to work and travel on business. That's positive . Wish your specialist but UK . 🙂