Cancellation of the start of CLL treatment

Going through treatment
1

Hi All, I thought I would give you an update re my neck tumour biopsy, and the cancellation of the start of Chronic lymphocytic leukaemia (CLL) treatment, during the Tumour investigation.

As I may have mentioned earlier, the Chronic lymphocytic leukaemia (CLL) treatment has been put on hold, until the results of the biopsy following an MRI scan, which takes place on the 14th September.

I don’t know if this is good or bad news, as the tumour is inoperable for me, and in a fairly inaccessible area, from my left mandible moving towards my Skull Base.

My new locum Haematologist (They keep changing) says that she wants me to have my bloods done at my GP’s on the 7/8th of September, and sent to her. She already took full bloods when I saw her last on 25th July. when my Blood counts were as follows:

Hb 107
white blood cell 119.0
MCV 101.0
RBC 3.59
Hct 0.361
MCHC 297
Neut 8.09
Lymp 108.00
Mono 1.93

Can anyone interpret those for me, as to the severity etc. I have been told that they are at a level where treatment would normally commence.

I cannot understand why she does not have me attend the Haematology Department and have them taken there and then. (Anyone any idea’s)

I am obviously concerned as to what level my bloods have to reach without treatment, before it becomes, problematic, for me.

I know I may be asking too much, but I thought I would pass it by you all, in case anyone has experienced similar problems, or has specific knowledge, in this area.

I wish everyone well, and thanks again for the tremendous support our forum has expressed, it has made things somewhat easier for me. Ron

4 Likes
2

Hi @Vindicatrix a lot to take in for you.
As for the tumour that is definitely a a medical question.
I have heard of more consultants lately asking patients to get their blood tests done at their GP’s and the results sent to them.
As for reasons, and from a purely non medical person, budgetary, backlogs and blockages at hospitals meaning the consultant cannot study the results before appointments etc, etc. I don’t know.
Unfortunately we cannot interpret blood tests on here and it would not help if we did because I do not believe (non medical again) that consultants usually take just one blood test in isolation it is more progression over a period of time, other tests and symptoms, medical history, existing medications, age, family history etc. etc.
We all support each other on our forum and I know you also support others.
We are here over the bank holiday so you are never on your own,
Look after yourself

3 Likes
3

Thanks Erica, what you say makes a lot of sense, there is much information being thrown at me at the moment, and I can’t keep up at times, it seems.

Shortage of staff and resources, plus long waiting lists, adds to the complexities, of my particular situation. It’s rather like a ‘Lottery’ in some Health Area’s, at the moment.

However, once I get the biopsy results, I will know better how to proceed.

Thanks again for your prompt reply, and support.

Regards Ron

2 Likes
4

Hello Ron,

I am sorry to read that you are having to wait for results and appointments to get the information you need to feel reassured or just knowing next steps.

With regards to the blood results you have listed above, these are abnormal and would be worrying for someone without Chronic lymphocytic leukaemia (CLL), but your Consultant will be expecting these results to be abnormal due to your diagnosis. As Erica rightly said, one set of blood results is not usually actioned upon in isolation, the Consultant will look back at your previous results and determine how quickly changes are happening. So it is difficult to comment on these ones from July, as they could be stable for you or they could have changed dramatically since your last test.

Starting treatment isn’t just determined by your blood counts, as some patients may have lower or higher blood counts than yours, so it is difficult to say to you that “white blood cell count above 50, 100 or 120 is the cut off” for example. A patient’s symptoms are also taken into account. Some people are very fatigued or suffer with terrible headaches with slightly higher white blood cell counts, and others can have no symptoms at all and white blood cell is 180. It sometimes depends how quickly the counts have risen too.
Your results do show you are anaemic (low Hb count and low HCT) but you may not be feeling too bad, hence why your Consultant wants to start treatment ‘soon-ish’ but not urgently. They know longer term you may start to feel symptomatic from your anaemia and treating your Chronic lymphocytic leukaemia (CLL) should correct this, as well as your white blood cell count.
I can only guess your Haematologist wants the blood tests done a few days in advance, so she can plan and work out the best treatment options prior to the appointment, to be able to discuss this with you on the day. If you have your bloods taken on the day of your appointment, and there is a delay, error or changes she wasn’t expecting, she will have to reschedule you to come back. Also, if there are any significant changes, for example your anaemia is worse, she will need to plan for this too.
I feel she is just being organised for your appointment for you.
Different hospitals have different procedures with blood tests, some have them done on the day (which can hold up the appointment times if there is a delay in the lab) and some request them to be done via the GP a few days before, so the Haematologist has them to look through and be prepared in advance. It might be worth you asking her at your appointment what their usual procedure for blood tests is, so you know for next time if this occasion it is a one off or it’s done in advance for every appointment.

I hope this message makes some sense, and reassures you slightly. As always, do call the support line if chatting this through would be helpful.
Take care, Heidi.

2 Likes
5

Heidi thanks so very mch for that, I so need some info at the moment, and yours, has given me a better understanding, and an element of reassurance.

There is so much going on at the moment, and my mind is all over the pace. I received an unexpected call out of the blue this morning from my Haemo lady, asking me to attend for a consultation tomorrow, as she wants to take more bloods, and another CT Scan.

I was actually going to call her today, as my groin lymph nodes have risen and are a little painful.

I am also having 2/3 vaccines tomorrow at 4.00pm,that she had ordered for me, and another 2/3 on 29th Sept.cern is

I can’t remember what they all are, but they include Pneumococcal.

2 Likes
6

I pressed the wrong button, and finished before I meant to Heidi,.

I was going to say that I am a little concerned about having more than one vaccine at the same time, as I had a terrible reaction to my 5th and 6th Covid ones.

Another thing which is puzzling me Heidi, is that I was told by my ENT man, that my proposed Chronic lymphocytic leukaemia (CLL) treatment would be put on hold until the results of the Biopsy on my travelling tumour, which starts at my Mandible, and is heading towards my Skull Base.

I am wondering therefore, why suddenly I am being called by my Haemo Team, I daresay I will know more tomorrow perhaps.

Thanks again, your post meant a lot to me, and yet again, emphasises the value, and importance of this ‘Forum’

Regards Ron

2 Likes
7

Please do update us after your appointment tomorrow and do make sure you get answers to all your questions.
Really be kind and look after yourself

8

Thanks Erica, I have my ‘Copious’ notes and questions at hand, I think of something new every few minutes it seems.

Regards Ron.

1 Like
9

Hi @Vindicatrix good for you, keep writing them down and do ask for clarification of medical speak if you need it.