Hi All
my name is Tim, I live in Stoke on Trent, I am 64 and was diagnosed through a routine blood test on a hospital admission for blood clots in both lungs with CLL or SLL. They are unsure as I am asymptomatic so on active monitoring (watch and wait). My Lymphocites are unmutated which I understand is not good and they are monitoring me every few months with blood tests. I was told that with CLL you are immunocompromised and have to be careful with infections and other diseases including melanoma and carcinoma. I checked my skin and had a lesion on my shoulder that kept growing a very hard horn, very quickly and a mole had grown from 3mm to over 8mm on my back. I had them both removed via surgery on the 3rd September but have to wait for lab results which could take 6-8 weeks. The surgeon suspected a squamous cell carcinoma on my shoulder and unfortunately he suspects a melanoma on my back which was deep. Hopefully he got it all.
I also have HOCM (Hypertrophic obstructive cardiomyopathy) with a pacemaker/ICD in situ, CTED (chronic thromboembolism disease) which are continuing blood clots in both lungs although on Epixaban blood thinners, stage 4 kidney failure, peripheral neuropathy and lymphoedema in both legs but to name a few.
The CLL Is just something else thrown at me. The positive side is I am still here fighting away and won’t let any of these diseases get the better of me. I hope everyone remains optimistic
kindest regards, Tim
Hi Tim Turbotim and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your CLL/SLL diagnosis……. But also your Melanoma/Squamous Cell Carcinoma issues.
I am Mike and I help out around our various Blood Cancer groups. I don’t have CLL/SLL 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 T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive T-Cell Non Hodgkin’s Lymphoma was then presenting so although my blood cancer ‘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.
Although CLL/SLL 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.
Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a 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.
You may find it helpful to join and post in our Melanoma and Skin cancer groups as these may well be the most immediate need if attention.
I am always around to help more, just to chat and to answer questions.
