Just had my next appointment postponed

[Research123]

Hi, I just had my next appointment postponed from June until November, meaning 8 months between appointments - and it's a telephone one (on the NHS in UK). Hard to see how they can test my blood on the telephone..... Is this something I should be making a fuss about? I'm on watch and wait, blood count only 30,000 (was 40 when diagnosed 9 months earlier, went down below to 24,000 (maybe 16000 - had a private test done and the doc said didn't mean much as tests vary, which sounded strange to me). I feel good bu think the lymph node in my neck may have swollen a bit. Clearly going to the hospital is dodgy now.... but so is the disease developing.

[annmcgowan]

Hi I am due a telephone consultation next week. I have had to get my bloods done at by my GP surgery. The results go online and my consultant can see them. I would give your hospital a ring about this.

Ann

[Research123 in reply to annmcgowan]

Thank you

[devonrr]

You’re very early stage CLL it seems so 8 months between appointments will not harm.

You need to get your bloods done just before, so you need a blood test form.

Phone your Haematology Clinic and ask. Also discuss any worries or symptoms with the Haematology clinical nurse. That’s what she is there for. I find the support is excellent via the nurse.

Stop worrying.

[Research123 in reply to devonrr]

Thank you

[MsLockYourPosts Passed Volunteer]

Did your doctor mean that the changes in your numbers weren't concerning? With a "blood count" (WBC or ALC?) of 30,000 or less counts jumping around is not unusual. You should follow your absolute lymphocyte count, which is a part of your white blood cell count. It says more about your CLL than your full WBC. Also watch the trends in your platelets and your HGB (hemoglobin) over time.

I understand a jump to 8 months between appointments making you nervous. I remember my doctor suggesting going from 3 months to 6. She read me pretty well and my face must have said it all. We went with 4. When were you diagnosed? Have your counts remained stable over time, other than the WBC / ALC jumping around?

You will probably be fine going 8 months, but ask about having labs done before the phone appointment. If you feel that you need them done more often perhaps your primary care could order labs for you.

I think all of us who are on hold for in person appointments are hyper aware of everything. Lymph nodes can wax and wane under the best of circumstances. The last time I pointed out one that was bothering me I included "Yes it hurts and yes I'm poking at it." before my doctor could ask. It turned out to be nothing. Keep an eye, but not your hands, 😉on yours, and if the change seems significant, of course give your doctor a call. Hang in there. This will be behind us someday, though not as soon as we'd like it to be.

[Research123]

Thank you that is reassuring and some good advice to stop poking. I'll soon be on my one year anniversary of discovering I'm a member of the club that no one wants to join and it's taken me a while to come to terms with it. Some time soon hopefully there will be a vaccine so hospitals can resume to normal and hopefully too as the medicine progresses there will come a time when this forum retires as the diagnosed take a couple of pills and are better, Until then though I have felt 100 times better being able to learn from others and share my worries.

[ornstin]

Trying to put myself into your position (but I am pretty risk-averse!):

It may well turn out to be OK wait until November, but it does it strike me as a long time off, particularly as you are newly diagnosed. My own inclination would be to err on the safe side and arrange a blood test through your GP or privately before then, say July or August. If it showed an unfavourable result then you or your GP then get in touch with the NHS hospital and request an earlier appointment.

A somewhat subjective view, of course but I cant see any particular down side in the above.

Antony

[Research123 in reply to ornstin]

I think that is a good idea. Hopefully by July things will have calmed down a bit with the coronavirus and it'll be safer to go out.

[ornstin]

Thanks. Just to add that it is true white cell counts can sometimes fluctuate quite a lot so you cant always tell that much from one result.