Newly diagnosed and hoping for a bit of advice

[Strube]

Hi,

Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL.

I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very slowly but noticably to me getting worse. I had a very physical job that has become more and more unmanageable and over the 2 years I had to cut my days at work down as I was struggling more and more.Blood tests did not show much out of kilter and the doctor pretty much shrugged. I always assumed it was something autoimmune that would everntually show itself and didn't really consider a lymphoma/leukaemia type disease. Before Christmas a few lymph nodes popped up in my neck. Not big but enough for me to notice them. I waited a few weeks to see if they went down but when they didn't I went back to the GP. As soon as there was something tangible there was much more interest. Things have moved slowly with covid but steadily. A newly raised LDH figure led to a CT scan that showed multiple enlarged, reactive but small (around 1.2cm mostly) lymph nodes in neck, armpits and abdomen. After a node biopsy in April they told me I had SLL but that my blood figures were good. A bone marrow biopsy says it is in my marrow too which confuses me and if anyone could explain why its in my bone marrow but not really affecting my blood tests I'd be greatful.

From the beginning the ENT surgeon and then the haematologist have said that I shouldn't be having symptoms yet with my blood test results but that it wasn't unheard of and a few weeks ago all sorts of tests were run to try and find another cause for the symptoms but everything has come back normal. Whenever I've spoken to anyone they have said that they treat the symptoms not the blood results and that they would be looking to start chemotherapy if nothing else came back. I have been terrible (partly through my own personality and partly thro covid appointment factors) for not getting more infomation out of the haematologist about exactly what my results are so I have no figures to give. I also don't know why but when the haematologist phoned last week to say that the last of the 'other disease' tests had come back negative, she also said that if they decide to treat me it will now be with ibutrinib and not IV chemotherapy. I am guessing this is to do with genetic profiling of the lymphoma but it is just a guess. She is going back to the multi disciplinary meeting this week to decide what to do.

I can tell she doesn't want to treat me yet. She keeps saying I shouldn't be having symptoms. To be honest I don't want her to treat me yet. I feel like a fraud with normal ish blood tests but I find it very odd that my symptoms match the B symptoms of SLL. I didn't 'develop' them after I knew I had the disease. I realise I'm very lucky at the moment but is it likely that the lymphoma is causing my symptoms? My question is really does anyone have a similar enough experience to offer an opinion on the question of whether I am likely to feel fitter and stronger if I take Ibutrinib or would I just be using up an expensive treatment option early for probably no tangible gain in quality of life?

Sorry for the essay and thanks in advance for any replies.

[ygtgo]

Hi pd

I cannot help you with any details about the effects of treatment.

My experiance of having untreated cll since 2006, is that I tire easily, very easily.

My cll ' batteries' are like the cheap ones used in the duracel tv ads, but my blood counts have not as yet indicated the need for treatment.

ygtgo

[Strube in reply to ygtgo]

Hi ygtgo,

Thanks for the reply. I like the analogy. Rings very true.

[jijic]

My advice is run, don't walk, to a specialist. You can find lists in several places, but I've found this to be the most international one (and I suspect you're in the UK based on your spellings): docs.google.com/spreadsheet...

I had a similar experience to you: My nodes popped up and stayed that way before I had a considerably raised blood count. Then one day they swelled so much that I was sent for a node biopsy and given steroids. The steroids brought the nodes down, but then my leukocytes went up considerably...and then they remained relatively stable for another three years.

In short: Treating early isn't as risky as it used to be when chemotherapy was the primary option for treatment, but it's not without risks either, which is why you need a specialist to weigh in. Specialists usually won't treat based on symptoms alone - you have to meet certain other criteria as well (such as a quick doubling rate for your WBC or low platelets).

Afaik, chemo and Ibrutinib are the options available to folks on the NHS, so she's not wrong there, but again: See a specialist to determine whether you're actually in need of treatment.

[Strube in reply to jijic]

Thanks for the link. The haematologist did offer to set up a meeting with a specialist when she phoned last week. At the time I declined as I had no reason to think that there was any discussion to be had but when she rings back I'll ask if it is still an option.

[jijic in reply to Strube]

If there's anything I've learned from my CLL experience, there's always discussion to be had.

A fun anecdote: My oncologist is a CLL specialist but he STILL took my case to a conference to get recommendations on which treatment was best for me. Interestingly enough, the three experts on the panel chose two different treatments

[lankisterguy Volunteer]

Hi Pdaquinas,

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You may find some useful information in these 10 postings and replies: healthunlocked.com/cllsuppo...

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There have been numerous discussions about Cytokines as the cause of fatigue when the doctors cannot find a typical cause: healthunlocked.com/cllsuppo....

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Dr. Terry Hamblin, a paragon of UK CLL research said this: mutated-unmuated.blogspot.c...

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Len

[Strube in reply to lankisterguy]

Thanks a lot Len. That's very useful and probably a good measure of how much reading I need to do if I want to be an informed participant in any kind of decision making process.

[morepork in reply to lankisterguy]

Ah, Dr Hamblin one of my heroes. Yes I've got a copy of his column on CLL & fatigue. Haven't convinced my haematologist of the connection yet. I've always thought how ironic or terrible it was that Terry Hamblin died of a non-blood cancer after battling the UK establishment over, and being denied use of, a monoclonal antibody drug.

[cajunjeff]

Here are some posts I did trying to dumb things down for us that might help you:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

[Strube in reply to cajunjeff]

They do help. Thankyou very much

[bkoffman CLL CURE Hero]

Hello, Pdaquinas! The CLL Society is here to help! This Webinar with CLL/SLL Specialist Neil Kay, "Just Diagnosed: What Do I Need to Know?" can be a big help towards getting your bearings. Wishing you the best of health! cllsociety.org/2020/04/cll-...