Cll ( my current situation )

Hi Henry v  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your CLL diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, also incurable, but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

I was holding back in putting up a reply to see if some of the CLL group members were looking in…… but there are a number of active members on the group at the moment so let’s look for them to pick up on your post.

I can understand the concerns you have. When cancer comes into a family the battle between the ears can be hard to control especially when it’s not treated…… “you must treat this straight away!” I hear you say……. but this is not often the way with slow growing blood cancers.

Active Monitoring (Watch and Wait) is often the first step in the treatment of these slow growing blood cancers. I was basically on Active Monitoring for 14 years before I needed any significant treatment although I was having skin treatments as my type of Lymphoma was a skin type.

I often talk with people on here and on another support site who have had little or no treatment as their condition has it had not developed sufficiently to allow the treatment to be effective.

Talking can help so do check for any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and most centres do have a Heamatology Support Group..

Do also check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

When it comes to CLL, although it has the word Leukaemia in it, in Heamatology terms, it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.

Lymphoma Action run regular Support Platforms both for patients but also for family and carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where your wife but also you can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.

I am always around to help more, just to chat and to answer questions.

Ah, Henry, it's heartbreaking to hear your struggles.  I understand your frustration.  Although I got treatment within months of being diagnosed with CLL/SLL, my father, who also has CLL, has not yet "needed" treatment and I find myself wishing he did so that he could finally start to feel better. 

My white blood cells never went very high - only 21,000 - but my symptoms were so bad that they were disrupting my life and I had to quit my job.  Getting through each day was a struggle; hence my oncologist suggested starting treatment.  My father's white blood cells are very high - 172,000! - and yet he has been able to keep going and until last year didn't seem to suffer much.  Now his spleen and lymph nodes are beginning to enlarge and his platelets are dropping so they are watching that carefully and he may need treatment soon if these things continue to worsen.

Like you, I have an autoimmune disease.  I have Sjogren's.  My oncologist and rheumatologist say that people with autoimmune diseases often feel much worse with blood cancer symptoms than people who don't have autoimmune disease.   And it is difficult for them to know which of our symptoms, and how bad the symptoms are making us feel, are due to the autoimmune disease and which are due to the cancer.   I was fortunate that my oncologist didn't really care; he just saw that I was suffering and said time to start treatment.  I wonder if your doctor is thinking that the severity of your symptoms is due to the RA and that treating the CLL won't help that...?  Interestingly, the treatment I was on - obinutuzumab and venetoclax - both suppressed the symptoms of the Sjogren's as they destroyed B lymphocytes, which are a major problem in both Sjogren's and RA.  I wonder if perhaps you could have a conversation with your hematologist (sorry for the spelling; I'm in the USA) about this.  Do you have a rheumatologist for the RA who could weigh in and perhaps help influence the hematologist?

Keeping you in my thoughts.  I know this is not fun.  

Unfortunately I can’t even get to a diagnosis as Queen Elizabeth kings lynn too stretched to see me

haemotologist commented on blood film in Dec 

small monomorphic lymphocytes suggestive of a low level lymphoproliferative disorder. 
GP won’t elucidate. appointment long awaited 3 months now cancelled till they can fit me in

I understand  watch and wait but no one’s even had courtesy of diagnosing

i think I’m going to take matters into my own hands and sit outside the hospital MacMillan unit till haematology tell me

Where else can I go? Can’t afford the numerous expensive tests.

i think? I could ask to be referred for a 2 nd opinion but that would have to be Cambridge?

with money I could see one of their most worthy consultants  next Thurs

oh the Royals no nothing! 

Had a discussion with Acrilan nurses today and tgey said much tge same that an awaited rheumatology appointment may lead to same tests on bloods

im just stabbing in tge wond because guidelines enable local hospital to put me off for tge foreseeable