Hi everyone I have had my consultation with a different specialist at the Northern Centre for Cancer Care regarding above. The meeting went well My family and I were given 1.5 hours to discuss and help clarify my clinical position and ongoing consultation needs following the previous 2 meetings with one of the centres CLL specialists which had gone badly wrong for me cited in my previous postings.
Clinically I am still at stage A indolent/non aggressive CLL/ SLL. The reason for considering early intervention with chemo is due to the fact that the trajectory of my bloods wbc 111 Hg 11.7 and platelets 104 suggests that I may becoming anaemiac and may have problems with blood clotting etc in the future. Under these circumstances my bone marrow would be struggling to keep me fit and well despite the fact I am fit and well at present. The analogy of a garden was given the unhealthy cells the weeds wbc may begin to stop my bone marrow from growing healthy ones the flowers rbc. But I am not there yet.
I asked have I moved from may never need treatment to will need treatment and was told not yet just more likely than we first thought but it is nothing to do with your cancer becoming active or aggressive.
With regard to future consultations I will never need to meet up with the doctor who disclosed these uncertainties to me too soon and without no other explanation than you may be becoming anaemiac. I am not anaemiac yet, I will get testing to rule out any reasons other the CLL for anaemia but they do know it is not due to B12 deficiencies now.
I will also get prognostic testing for suitability for chemo etc if and when the need arises and will be included in and treatment decision making process.
It seems the doctor I have seen did speak her thoughts out loud to soon and without certainty. She also failed to provide justifiable reasons at both sessions thereby riasing my anxieties to early and hopefully unnecessarily. we have agreed I will not see here again and any consultations with my new doctor will be monitored to repair my trust and confidence in the team.
However they have been raised and it seems it may be necessary for me to have chemo in the future maybe even in the next year. On the brighter side I am informed my prognosis for suitability with a good outcome is good given what my blood monitoring has told them over the past 6 years And the fact I have coped without without treatment. Again not a certainty as prognostic testing is still required before treatment.
So guys still a lot of uncertainty around but looking more likely for me. For me now the way ahead seems to be to gather any information I can on treatments and to get an external second opinion. I will contact Prof. Hillman's secretary to guide me on the second opinion front. I have over the past 6 years watched read and save all the treatment videos from health unlocked on CLL. Unfortunately my computer crashed and my back up systemsaved only documents not videos.
Can anyone send me copies of up to date treatment videos/ advice and provide me with any comments on my current position as well as where to get second opinions should Prof Hillman be unable to help.
Regards
Ann
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annmcgowan
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Thanks for reporting a much more encouraging outcome. Great to hear you are arranging a second opinion at Leeds from Prof. Hillmen.
Sorry to hear you've lost your saved videos, but I wouldn't worry too much about replacing them. You are sure to see plenty more updated videos posted here before you need to consider treatment.
Thank you Aussie Neil I was really worried about the loss of my videos. I am having to learn how to work my new laptop on top of everything else that is going on so panicking a bit p.
I'm really pleased to hear the outcome of this consultation Ann and it's obviously to me that your justified level of dissatisfaction over the previous consult has hit home with them. I hear cages being rattled and conversations being had in the background. The good thing is they now know you expect better and I'm impressed with the way they've addressed this. Prof. Hillmen has an excellent reputation and I'm sure your care going forward will be much more responsive and clear with your full involvement.
It must be frustrating for you that 'the weeds' are tangling up an otherwise excellent landscape and I hope this can be sorted so it doesn't undermine your overall condition or precipitate a need for treatment.
Can I just suggest that you restrict this post to the community because it's personal and mentions specific medics and practices. Unless of course you'd rather your experience there be shared more publicly.
Thank you Newdawn I too hope the weeds do not lead me down the path to chemo maybe prof Hillman has different ideas ! However, if they do I have a better understanding of why now and potentially a good prognosis. I am delighted with the response I received from my old consultant who could not have handled the situation better. I now have a way forward and feel safer than I did a few weeks ago.
Sorry I did not restrict the post this was my error I am quite new to blogging, I will do in future. Thank you for all of your advice and support. I will keep the community updated as and when necessary. I hope someone can benefit from reading my postings other than myself.
Good to hear you now have such a great team who are willing to give you time.
Also good to hear they are still looking for non-CLL-related causes of the anaemia. And I like the garden analogy....however, I might be being thick, but IF your (bad CLL) white blood cells ARE crowding out your bone marrow, I am struggling to understand why you are still Stage A (this could easily be my lack of knowledge). It sort of indicates to me that you have a lot of CLL cells - either that or something is causing the few to stay in the bone marrow.
Were other possible CLL-related causes of low reds discussed? CLL can trigger Auto-Immune Haemolytic Anaemia (AIHA), where a few CLL cells fool all white blood cells into killing reds (generally in the spleen). In this case, your bone marrow 'garden' will be furiously producing flowers to compensate for the destruction in the spleen - so your bone marrow could be completely healthy / full of fertiliser! AIHA signs are a positive Coombes Test, high levels of reticulocytes (baby red bold cells), swollen spleen, high bilirubin (you can seen this because your wee is more yellow, your eye-whites are yellow-ish and you can look a bit grey/pale.....).
AIHA is possible whilst CLL is still Stage A: the (few) CLL cells just trigger something in the spleen of all white blood cells to target/destroy reds. I know, as I have been through this - and a positive of the whole process was knowing my bone marrow WAS very healthy, as it was producing huge amounts of reticulocytes!
Hi quarry thank you for your reply. I have non of the signs of AIHA you mention but my understanding is that this would be tested for prior to treatment. I think the problem in my case is that the first doctor spoke out loud possibilities without thinking and the second doctor tried to put that right. There are still a lot of uncertainties with regard to where my CLL is going at present. I am awaiting a letter from the second doctor to outline the content of our discussion if I am still unclear I will be following that up and I will draw the possibility of AIHA to their attention. Although the meeting was positive and helpful on the subject of other causes of anemia the only one that was ruled out was B12 deficiency. The letter from the first doctor said they would have to test for haemolysis. I do not understand what that is perhaps you could help is this AIHA?
I hope this clarifies why I am still at stage A? Your posting has been most useful in refreshing my memory about AIHA. As you may imagine my head has been all over the place since the unnecessary declararations of the first doctor who was not basing what she disclosed on certainties. I will keep you informed of my progress.
haemolysis is just the destruction of red blood cells - it is a symptom, not an underlying reason/disease. So no more than say having a high temperature....does not tell you what the cause is.
You will have higher than normal bilirubin (products of destroyed red cells) in your body (yellow wee, yellowish eye whites etc). There are many reasons for it (including nothing to do with CLL), so good they are looking outside CLL-related causes (and so AIHA caused by CLL is just one possibility amongst many other causes for haemolysis).
Stage A CLL (as far as I know) just means the number of CLL cells are not overwhelming/doubling rapidly, you don't have them stuck in your glands etc....basically in number, they are not a problem
Ann - I wouldn't worry about lost videos. When I was diagnosed (2003) I used to download every report posted, especially those that Chris put on sites, so I could read and reread them until I understood them. The first thing I realized was that I don't have his scientific mind and that it was OK if I didn't understand everything. I had people, including a great doctor and Chris himself, who I could ask. Not long after that I realized that what was new has quickly become old as research progresses. A lot of what you lost is probably dated, and you have time, now, to look at the latest things as they are posted. Chris just posted a great one of Dr. O'Brien, and the video of the Patient Power event mentioned today is up on their site - patientpower.info Between those two you should get a great overview of what's going on in the CLL world.
I would guess that your doctors are going to be watching for trends (absolute lymphocyte count - not percent, HGB, and platelets especially). If they see a doubling of yout ALC or a significant drop in your HGB or platelets then they will be considering what to do about it, but it sounds like you are relatively stable for now. If you aren't charting those numbers yourself, you might find it helpful to watch the trends yourself.
I'm so sorry the other doctor gave you such a scare. I hope Newdawn is right about some behind the scenes conversations going on. Try to do some deep breathing. I think that for now you qualify as an officially boring patient (the best kind to be !!!!!) Plan to do something special for yourself to celebrate.
To restrict your original post, which restricts the whole thread, click on the little v at the bottom, then on edit and go to the bottom of your post to indicate community only.
Thank you pkenn yes they are looking at trends and considering where I might be going. I am taking a deep breath and considering a holiday. Thanks for advice on v i have tried and it keeps coming up report. I have had this problem before so I will have to remember to restrict my postings in future.
Ann, I believe dr Jeff dharma not had information on his blog which would allow you to assess what treatment might be suitable fir you. You could also check out the CLL Society fir such info.
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