Mixed results

[Carpenters52]

Hello everyone I hope your all well?

We had a wonderful fund raising event for ( Bloodwise) last Saturday evening.

(East Dorset fundraising branch) nearly £1,100.00 along with our supermarket

Collection, the work goes on....

anyway just sound you all out really, very confused, I was ( Diagnosed 14 months ago Stage A , W&W) age 52) on my last appointment to see my consultant, I had a Ct scan &

Bloods taken, and unfortunately for me, the consultants first 2 appts were no shows.

so I was dispatched within 5 mins , and told she would send me the results via the mail!

Well I hadn't seen her for 7 months due to a mixup with appt times, and general talk before was maybe going to once a year appt wise.

The results I feer not good really platelets down from 234 to 149. B2m 3.1. Both these markers not good. White B count. Up from 45 to 75 ( not to bad) but extensive Lymphodemathy ( can't spell that) 7mm nodes up but not huge.

We talked a year ago about a long time on W&W but think if the platelets keep diving could be maybe a year?

I am very clueless , perhaps some of you wonderful folk will enlighten me!

Just thinking prognosis not at favourable as I first thought.

All the best to you all.

Kelly

[Carpenters52]

Ps I forgot to say that I am 13q & now seeing her every 3 months!

[AussieNeil Partner Administrator]

Hi Kelly

13q del is a good marker, but you obviously appreciate that your high B2M result, your growing nodes and your (at the moment) fairly fast growing ALC and most importantly falling platelet count may indicate treatment discussions are on the horizon. Your CLL may well stabilize, but obviously your consultant is doing the right thing by reviewing you more frequently.

Generally, once your platelets drop below 100, then treatment might start being discussed, and then actually started when they drop below 70, but mine dropped under 100 about 2 years ago and have been bouncing around 100 since then. Makes it hard to plan ahead doesn't it .

Neil

[Carpenters52 in reply to AussieNeil]

Hi Neil,

Many thanks for your contents, you have confirmed exactly what I was thinking, relieved at the 13q marker, but at the same time worried about the B2M marker, amazing what a difference a year makes with this CLL

This is the marvellous thing about this site all these wonderful folk all in it together.

Regards to you

kelly

[Newdawn Administrator]

What does occur to me Kelly is your Consultant isn't giving you enough time and attention to consider these things properly. Despatched in 5 mins having waited 7 months to see her after a mix up last time just isn't good enough for you at this time.

Certainly with your levels going as they are, annual checks ups are not sufficent. I'd be wanting a more detailed conversation at this stage because obviously your platelets have taken a bit of a drop.

Wishing you well and hoping things stabilise for you Kelly.

Newdawn

[Carpenters52 in reply to Newdawn]

yes many thanks to you Newdawn.

I totally agree, I am due to see her again at the beginning of December.

so I shall most definitely make sure I have plenty of questions for her.

She is a Cll consultant, but communicates very little really.

The alarm bells are only going off, because I Have done my own bit of digging on this wonderful site.

Always fantastic advice that you give everyone.

Thanks again.l

kelly

[Cllcanada Top Poster CURE Hero]

Kelly

I agree with Newdawn, my doctor would have me on a 3-4 month visitation with numbers like yours...

You also should be tested for autoimmune complications like ITP for falling platelets and perhaps a CTscan would be in order to judge node and spleen...

If you feel that your doctor is dropping the ball... seek a second opinion....

Squeaky wheels... 🌀

~chris

[Carpenters52]

Hi Chris,

Thanks for your great advice, yes I have had a recent CT scan and the spleen seems to be okay, just plenty of nodes up but not huge.

Yes will ask about the test you mentioned.

Like all of us, it's all jogging along then, it all begins to go haywire.

Best regards

Kelly

[Kwenda]

I have sent you a private message with information about consultants in your area that are known to provide a good service. Perhaps it is time to change consultant and the NHS does allow you to search for and obtain a second opinion. Like many things with the NHS it does pay to be assertive and push and ask questions.

Dick