CLL

Hi Shaun Mr Bean 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 for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

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 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.

If your clinical team have not recommended any meds this implies that at the moment you don’t need any,

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.

Mr Bean said:

Do you all take precautionary meds? Covid jabs are they worth the risk ? Shingles ?

From my experience living with a condition that has permanently reduced my immune system and its ability to fight infection I have taken ever vaccination that was recommended…… I have had Covid 3 times and I have had worse colds….. so I see this as a positive,

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

Although CLL it has the word Leukaemia in it, in Hematology terms 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...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Buddy Service where you can be linked up with someone who has walked the same 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.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

Hi ya 

Just a quick question about immune system I am watch and wait for CLL . I work in a dental practice which has lots of patients passing through should I be concerned about my reduced immune system I do seem to pick up lots of colds.

silly question is my immune system permanently reduced even if I’m on watch and wait.

thank you

loraine 

Hi Loraine NannieRoll this is actually not a silly question but an important one.

My consultant said yes, my immune system would be reduced even on Active Monitoring…… if you think about it. Your immune system is rather busy doing its best to stop your CLL progressing (that is the function of our immune system)….. but this can leave the back door open for other more lower level bugs/infections to find their way in and take hold quicker then normal.

I personally would not use the word ‘concerned’ more carful and vigilant.

From my limited experience of dental surgeries masks are part of life, so use them when you think that there is an issue.

I worked in Further Education for the first 12 years of my diagnosis and was basically on Active Monitoring (Watch and Wait) but as I had a very rare skin Lymphoma I was getting skin treatments as though I had bad Psoriasis so this did have an effect my immune system more than not being on the main treatments, so yes I often had bad colds.

To help reduce this my poor students (mostly 16-18 years old lads) had to suffer the windows being open even during the winter…..

My GP was great and once I was diagnosed at 44 he insisted that my wife and I had the flu vaccine every year even although we were no at the official age to have it and I think that helped a lot.

Thank you for your reply greatly appreciated 

Hi Loraine NannieRoll do have a look at the Lymphoma Action Support Platforms as I talk regularly with folks ‘living’ with CLL, SLL and HCL……(I am also a volunteer with Lymphoma Action).

I highly recommend these groups as there is indeed nothing better than talking with other who have walked the journey……. their Buddy Service is also excellent also.