Telephone consultation

[kitchengardener2]

Good afternoon. Had my call from Dr Munro and mostly good news in that my bloods are not showing too much change. There is a little more anaemia and a slight rise in white cells. She said that unless the white cells drop, she might be looking at some treatment in about six months. However, because I am well in myself, she is happy to leave me on watch and wait for another three months. There is a new treatment just being trialled which has little or no side effects and this is the route that she is looking at taking. Sorry can't remember the name Alca ...?

So whilst I am a bit shell shocked, I have to be optimistic.

[GMa27]

Was it acalabrutinib?

Glad you have 3 months. Can you get second opinion? 💕

[kitchengardener2 in reply to GMa27]

That's it. Thanks I trust my consultant so won't look for other opinions.

[GMa27 in reply to kitchengardener2]

Heard very good things about acalabrutinib. 💕

[lankisterguy Volunteer]

A few minutes after you posted, this appeared :

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Encouraging article on Calquence (acalabrutinib)

healthunlocked.com/cllsuppo...

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And once you are on that page, please look for the box labeled: Related Posts

*Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)

*Anyone taking calquence (acalabrutinib)?

*Forbes Article About Possible Calquence and Imbruvica Impact on COVID-19 Fight

*Calquence - new clinical trial?

*Acalabrutinib intolerance

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Len

[kitchengardener2 in reply to lankisterguy]

Thanks, just had a quick read but will study later.

[cllady01 Former Volunteer in reply to lankisterguy]

"son" of Ibrutinib, could be "daughter" of Ibrutinib with the lighter touch it is showing.

(couldn't resist that)

[Spiritlove]

I am also with Dr Munro at York (if its the same one). I wonder why she is looking at treatment as you sound similar to me, she often tells me my count has gone up a bit and I am a bit anaemic.. I am always extremely anxious when I have to see her. At least she is looking at a new treatment. Thinking of you.

[kitchengardener2 in reply to Spiritlove]

Yes I think it will be the same and she is lovely. Like you I am always apprehensive and worried. I really hope I can stay watch and wait for a lot longer. Do you live in York? I am in Bridlington but usually see Dr Munro in Scarborough. Stay safe

[Spiritlove in reply to kitchengardener2]

Yes I live in York, been ww 13 years now, always with Dr Munro. I do hope you can remain on ww for a long time. I am surprised she has mentioned treatment as I am always a bit anaemic and she tells me to take iron tablets and doesn't seem worried with small rises in white cells. Take care x

[Quarry]

slight rise in whites and a little more anaemia.........this does not sound like treatment near! It could just be lab testing variations. For some reason, at my last bloods, they took two vials for the basic tests (this has never been done before - probably just a different drawer). So I got two results.

So same blood, taken same minute, and processed by same lab........but results not the same. Whilst not a hugely significant difference, they are different - from memory a number could be for example 10.4 or 10.8. Look at long term trends, not individual results

I would relax...your next bloods might be good!!

[kitchengardener2 in reply to Quarry]

Thank you so much, you have given me confidence.

[Wendy328]

Sounds like my telephone appointment. I am happy to W & W. I will have a CT scan.

[Mystic75]

Hi KG,

I remember well how anxious my husband and I felt when we knew that treatment would be coming soon. In fact, my husband was very resistant to being treated because he felt good enough and didn't want to start anytime sooner than he had to.

He realized, though, it was better to start treatment when he was still feeling good rather than wait too long, when it wasn't certain how he would feel so there are a couple of ways of looking at it. The labs will be a good indicator plus spleen size.

All the best to you! You've got a great doctor and there have been alot of positive results for acalabrutinib.

D.