CLL specialist - QE or Heartlands West Midlands?

[NooNoo14]

I have not posted for some time as other health problems took priority but today I have had an appointment at Heartlands Hospital, Birmingham where I was offered a place on a trial (having a bone marrow biopsy and full body CT scan in the next couple of weeks) and returning to see the haematologist in a month's time. I think this is based on an anemia diagnosis and lymph nodes (nothing visible but you can feel them).

Unfortunately it was all so unexpected and such a shock that my mind went blank and walked out without asking any questions.

Sitting at home this afternoon, I remembered the advice on here that I should ask for a second opinion from a CLL consultant.can anyone recommend one either at Heartlands or the Queen Elizabeth hospital in Birmingham?

Thanks Netty

[Cammie]

I think if you check the hospital web sites they have details of the expertise of their heamotologist consultants.

Might be worth a check to give you some idea.

What was the trial offered?

[NooNoo14 in reply to Cammie]

Thanks Cammie. I don't doubt the credentials and expertise of the haematologists at Heartlands but I seem to remember that you should ask to see a CLL consultant when preparing for treatment rather than a haematologist.

The trial is Flair but the meds detail has yet to be revealed.

Apologies for the delayed response I have been at work today!

Netty

[Cammie in reply to NooNoo14]

Don’t get confused between cll specialists and heamotologist as all cll specialists are heamotologists who specialise or have specific interest in cll.

There are several cll specialists at Birmingham as they are involved with research into cll see my post below.

[NooNoo14 in reply to Cammie]

Thanks Cammie I didn't appreciate that.

[PaulaS Volunteer]

Hi Netty ,

Good to hear from you again, but sorry to hear you need treatment now.

I don't know anything about CLL specialists in Birmingham, but wanted to let you know I'm thinking of you as go into this new phase of the CLL journey.

I can understand how your mind went blank with shock, when you heard it was time for treatment. I've reacted like that too, when I've had unexpected news. Many's the time I've got home then thought of all the questions I wish I'd asked... But now you have time to write down all your questions and be more prepared next time.

Cammie's already asked you, but I too will be interested to know which trial you've been offered.

Wishing you well,

Paula

[NooNoo14 in reply to PaulaS]

Hi Paula. Lovely to hear from you. As I told Cammie, it is Flair trial so will involve Ibutrinib + another.

How are you keeping?

Netty x

[PaulaS Volunteer in reply to NooNoo14]

I'm much better than I was, thanks Netty. I started Ibrutinib four months ago and the first 6 week were VERY hard, with crippling joint pains (and other side effects). But then the joints suddenly got better and things have continued to improve since then. Just got some stomach issues to sort out now, which are worse because I had my gall bladder out last year.

I'll be interested to hear how you get on, and which arm of the FLAIR trial the computer puts you into.

Best wishes

Paula xx

[NooNoo14 in reply to PaulaS]

Hi Paula. It would appear that Ibrutinib is a possibility + possibly other meds but I will let you know.

[NooNoo14 in reply to PaulaS]

Sorry Paula, didn't finish my reply. I am just sitting waiting to go to the hospital for my test 😳. Oh joy! I keep reminding myself that I have just gone through many months of monthly eye injections so can cope with this (well I can hope haha).

Sorry to hear of your problems. Hope your stomach problems ease very soon.

Take care

Netty

[PaulaS Volunteer in reply to NooNoo14]

Hope all goes well with your tests today, Netty. As you say, you've been through months of gruelling eye injections, so you will cope with this... One day at at time...

Wishing you well,

Paula

[NooNoo14 in reply to PaulaS]

Hi Paula. Arrived at the hospital at 11am for my 11.30 appointment. Left the hospital at 5.45 pm. The procedure itself was only a little painful and uncomfortable so was looking forward to leaving after 10 minutes lying down. When I tried to stand, it quickly became apparent that my right foot and leg were completely numb and narrowly missed falling over.

Back on the bed the Consultant told me that a nerve had obviously been damaged in some way and I had to stay where I was for 5 hours and if the feeling didn't return, I would need a CT scan and be admitted. You can imagine how well that went down!

Thank goodness the feeling returned after a couple of hours but still had to stay where I was for the full 5 hours.

Whilst it didn't go to plan, I cannot thank the staff enough for their care. They were so caring.

This morning my back is fine, just a bit sore if I touch it.

Netty

[PaulaS Volunteer in reply to NooNoo14]

O Netty - what a day! I presume it was the bone marrow biopsy that caused the damage to the nerve. What a relief that the numbness wore off after a couple of hours.

I've had several bone marrow biopsies and never had any problems, but your experience reminds us that unexpected side effects do sometimes happen...

So glad you're OK today, even if a bit sore.

Take care,

Paula

[NooNoo14 in reply to PaulaS]

Thanks Paula. Yes it was the bone marrow biopsy that caused the problem. It would seem to be a possible side effect as it was written on the consent form when I signed it - 'nerve damage'. Never mind, all over now. I can take the dressing off tonight and have a shower tomorrow - can't wait 😊.

Take care

Netty

[PaulaS Volunteer in reply to NooNoo14]

I guess it's a useful reminder to us all, to read the small print on the consent form! Not that there's much we can do about it though, if we've been told we need a biopsy.

Anyway, it's great that you feel OK now. I'm sure you enjoyed that shower!

Wishing you well,

Paula

[NooNoo14 in reply to PaulaS]

Appointment with the Consultant confirmed for 28 February x

[PaulaS Volunteer in reply to NooNoo14]

That's good, Netty. Will you know if you've got onto the FLAIR trial then, and which "arm" you'll be put in?

[NooNoo14 in reply to PaulaS]

Yes I should know - assume it depends on the test results.

[Cammie]

Just looked on the website

There are a number of consultants interested in B cell malignancies but Dr Guy Pratt is involved in research for cll at UCH I’m sure he might be worth a punt.

Geoff

[very]

Hi noo noo dr Fiona Clark she was my husband's consultant at the Alex Redditch but she is now lead haematologist at the Queen Elizabeth Birmingham. Hubby was going to transfer to the Q E but he saw his new consultant yesterday and found him very approachable. He was on the flair trial (F C R).

regards Jenny

[NooNoo14 in reply to very]

Thanks Jenny. I have heard good things about the QE (as it will always be known as to me 😊).

How is your husband coping?

Netty

[very in reply to NooNoo14]

Netty hubby is doing very well his consultant yesterday was very pleased with his blood's and he had no swollen lymph nodes.Hubby has had C L L for 18yrs and only had chemo18months ago and dr Clark was amazing and he had the best care possible.

jenny

[NooNoo14 in reply to very]

Great news Jenny. I was diagnosed in 2010 from a Well Woman check at work. I do not have any visible lymph nodes although I can feel them in my groin area and I think under my arm. My WBC count which was taken just before Christmas was 195 which I know is not exceptionally high compared to some on here so assume the reason for treatment is based on the anaemia but then again, my conversation with the haemo on Wednesday is a blur.

Best wishes your husband stays well.

Netty

[Jm954 Administrator]

Hi NooNoo,

I was working in the NHS in the Midlands and in Haematology when I was diagnosed with CLL so this is a choice I was faced with. If you lock your post or PM me I can tell you more.

best wishes

[Sharastani]

I have been under Birmingham Heartlands/Good Hope. I was under several Haematologists including Guy Pratt when I had FCR as part of the ARCTIC trial in 2009/10. All of the consultants/Haematologists (and the nurses/trial nurses) have been brilliant prio/during and since my treatment. I also know that whilst having treatment I (and other) patients were focussed in their clinician meetings so that was effectively a second (or more) opinion. Hope it all goes well.

[NooNoo14 in reply to Sharastani]

Thank you Sharastani, much appreciated