Appointments postponed - shld I do anything?

[Research123]

My last appointment with the nhs was beginning of March. June's was postponed then until November and now re-postponed until mid-January. Back in March my Lymphaecite count was 32000. It had been 39000 when diagnosed in July last year, then went to 24000 in September. I had a private reading saying 16000 in November. Then up to 32000 in March. (The doc discounted the private reading saying saying different labs count differently). But since March I've felt fine except I think the node in my neck swelled slightly. So the question is shld I be concerned at the long delays to my latest appointment. And shld I perhaps try and organise a private blood test. Thank you!

[AussieNeil Administrator]

It seems that your lymphocyte count is fairly stable overall, even though it jumps around considerably. How are your other blood counts going, particularly your haemoglobin and plateles? The trigger for starting treatment node wise, is 100mm/4 inches in the largest dimension.

Given you are otherwise feeling well, perhaps a blood test to relieve any concerns is appropriate between now and your specialist appointment, which presumably been deferred because you are low risk?

Neil

[Research123 in reply to AussieNeil]

Thank you Neil. I appreciate your advice which is always good. I haven't got a print out of the latest results but back in November Haemogloblin was 163gl and the platelet count 181 x10^9/L which seem to be ok from what I read. And the nodes aren't that big. I hope things are going ok for you. Hopefully, we will qualify for this vaccine then can resume a more normal life.

[cajunjeff]

I think as a general rule someone in watch and wait should do labs semi annually or quarterly. It all kind of depends. You might monitor someone with unmutated Cll or higher risk FISH more often and someone with low risk cytogenetics less frequently, even just annually if the Cll appears truly indolent.

The way you have described your situation, I don’t see much difference between having your labs now or in January. The safest thing to do is ask you doc if you have access to him/her. My guess is they would tell you it’s fine to wait.

Even if your labs show that your Cll has gotten more active and you have a jump in your wbc, it’s unlikely it would be something requiring immediate attention given your Cll history.

[Research123 in reply to cajunjeff]

Thank you that's helpful

[JigFettler Volunteer]

Yerrr... Um as above replies likely no major issue with that. I would ask the your GP for some bloods. Excellent compromise.

Jig

[ornstin]

I think your treatment by the hospital has been pretty shabby, and you shouldn't have been left with these worries. Also, as a newly-diagnosed patient, I think you have been left with too long a gap between appointments-this partly based on my own experience.

It would be interesting to see how the hospital could clinically justify a postponement until January 2021 when it was originally considered that you should be seen in June 2020.

I don't disagree with anything said above about what you should do now.

However, if the hospital postpone yet again, you should consider making a complaint.

Antony

[FeistyGirl]

Have you been given the name of a Clinical Specialist Nurse that you could ring to discuss things with? I’ve always found mine to be very useful if I’ve got any concerns or queries.

[janvog]

My hematologist in a large multifacility cancer group in the U.S. "sun belt" has me come for a whole battery of tests every TWO month': CBC, CMP, CBC AUTODIFF, IMMONUGLOBULINS, LDH. Plus I asked him for tests which before COVID were usually ordered periodically by my primary doctor, but which would require a trip to a lab. Thus following my asking my hematologist also orders TSH and A1c each time. Last time "we" added UA DIPTSTICK. On my next appointment "we" added LIPID PROFILE. As "experienced patient", I more or less understand most results. I arrive at the large facility at 1:00. A lab technician draws for the tests at 1:15 and then leads me into one of the offices. At 1:20 the hematologist walks in and brings the CBC results from this test. (Last time also the CMP). How they manage to get the tests finished in minutes and distributed and reviewed by the doctors is a mystery, because there a over a half a dozen other patients getting attended by lab technicians at the same time.) My hematologist and I both agree that I am "alright", he gives me the order to take to the scheduler: Next appointment in two month'. I realize this hematologist needs to ration his time on stable cases such as mine and I cooperate by not asking about issues which are in great detail explained on the internet. like this wonderful blog. I had STAGE 3 CLL two years ago, since then with IMBRUVICA almost back to normal CBC. Daily one hour walking on indoor treadmill and one climb to the 16th floor. Strict optimal diet: Vegetables, salmon (canned), fruit, non fat plain yogurt. I am 86. I check blood pressure and oxygenation twice a day.