When to seek a second opinion

[MovingForward4423]

Lots of people on this forum ask questions about if they should start treatment after being advised by their doctor. CLL is a very complex disease with many mutations and factors that can bring different prognoses. Research and new treatments come on rapidly, and new inhibitors are removing the requirement for gruelling chemo, in particular for unmutated, and those with other unfavourable genetic markers. In my personal opinion, it is always wise to get the view of a specialist who is up to date with all the latest developments, treatments and research. CLL is a dangerous disease, don't be afraid to ask for a second opinion!

[cllady01 Former Volunteer]

This is good advice and an easy move for U.S. citizens, but more complicated process for U.K. health system, though not impossible according to the following article.

tpauk.com/main/article/the-...

[Newdawn Administrator in reply to cllady01]

Some of the links are not working on that article cllady. If it helps, here’s a post I did on the subject a few years ago;

healthunlocked.com/cllsuppo....

Newdawn

[cllady01 Former Volunteer in reply to Newdawn]

thank you, Newdawn. I just feel we in U.S. need a heads-up now and then of what could be difficult for others.

[Mtk1 in reply to Newdawn]

Thanks for this Newdawn, I have been thinking about this lately as sadly I don’t have a lot of confidence in my haematologist, and recent events have really brought this to the fore. I thought that when I started on acalabrutinib that I would be monitored every 4 weeks, but this only happened after the first 4 weeks, then I was told he would see me in 3 months, I won’t go into recent events as I have written about them on here, ( don’t know how to copy them in, sorry)but I have had no contact with my haematologist since, I even had to contact my nurse to see if I should have stopped my other medications at same time as stopping my acalabrutinib. My haematologist has had no contact with me and it was cardiologist who informed me to stop medication.Don’t like to fall out with people, but I am really worried.

Dave.

[MovingForward4423 in reply to Mtk1]

BTK inhibitors need to be closely monitored. Side effects can be dangerous, and AF is one of those side effects. Stopping treatment can also be hazardous as the B cells tend to grow back quickly if you stop early without guidance.

Personally, on Ibrutinib, I have two monthly blood checks, blood pressure, and I monitor my heart rhythm at home with Kadia.

You need to see a specialist who deals with blood cancer, who can advise on the Acalabrutinib, and manage any side effects.