Hi
I’m Tracy new to the group hello to you all.
I was diagnosed last year at 50 (happy birthday wasn’t expecting that )with Sll/Clll but I’m more lymphoma.
My glands have for a long time gone up and down but more recently got extremely large to the point I had to go to A&E my throat,face,under chin area so large trouble swallowing also under arm pits huge.
I’m on watch and wait my bloods all good so my haematology team think this is down to an deep hidden infection.
Ive had now various blood tests to show infections (gold top) and a jaw scan incase of any hidden bacterial infections but all clear.
As soon as I’m on a 2 week antibiotics it all goes down I look normal again the tiredness goes and energy levels back also this nerve ending pain luckily not often I get this that disappears too.!!’
Then after couple of months it all starts to return 
.
I just wondered if anybody else has had any of these experiences with antibiotics?
Im at the hospital tomorrow so more talks about what will happen next in a way hoping for biopsies as can’t live on antibiotics but I can’t have this terrible swelling and lumps either.I’ve tried to be pos
ive but just recently having a wobble 
.
Thankyou
Any information or your experiences I would be grateful x
Hi Tracy L and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have CLL/SLL but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I was like this on and off for my first 14 years when I was on Active Monitoring (Watch and Wait) until my condition became aggressive. My immune system was so busy fighting and consoling my NHL I was more open to infections (my consultants words) so it was often on antibiotics and it was rather normal for my Lymph-nodes to go up and down as this is what the Lymphatic-System does.
Let’s look for you to get a clear answer as to what is actually going on ((hugs))
Always around to help more or just to chat
Good morning Tracey, waiting and blood cancer indeed go hand in hand unfortunately.
It took a good year, 6 biopsies and a few CT scans before I got my diagnosis and this was with my consultant being rather sure as to the type of my Lymphoma…… Lymphoma is a challenging condition to diagnose as there are actually 60 types and subtypes
So yes the waiting around for ‘something to kick off’ can be challenging. Once I understood my type of Lymphoma I was able to carry on with life and was teaching a full timetable for the first 12 years after my diagnosis until I eventually had to retire on medical grounds.
I do hope you get answers soon ((hugs))
Good morning Tracy,
This is all part of navigating the Active Monitoring stage and it does often result in 'mental' false starts thinking that it must be time for treatment to start.
This group is rather slow at the moment so to widen your support platform (although I am always around) you may want to check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Lymphoma Online Support Groups....... I highly recommend these groups as there is nothing better than 'talking' with other who have walked the journey and if you were in Scotland you would bump into me as I run one of the Scottish groups.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Yes my story (LINK) is rather long and complicated but do what we have to do to get through this and 'live' life.
Highlander ((hugs))
Hi Mike
Brillant thank you so much 
x
