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Follicular Lymphoma

I have follicular lymphoma and am on watch and wait since diagnosis in 2017. Last year I had what I thought was a saliva stone removed from the base of my mouth. I was advised that it wasn’t a stone so must be my lymphoma. More recently I have more of these smallish round pea-sized swellings. They arn’t sore and I had chosen to just put them down to my lymphoma. Has anyone else experienced these with their lymphoma. I would be interested to know. Thanks so much.

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No @Ruth2 sorry I cannot help you but my philosophy is to always let my medics know of any new symptoms so they can assess the situation and know what is going on. It also gives me the opportunity to get any fears or questions answered.
Look after yourself.

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Hello @Ruth2, I agree with @Erica and would also let your Haematology team about lumps either on your next clinic appointment or give them a call if it is a while away. Take care Gemma

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Thku for your advice. I think i prob will hear something in the New Year from my Haematologist as i have been passed back to him from the mandable/dentist section.

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Hi @Ruth2 I had a whole lot of tooth infections a couple of years after diagnosis and my dentist referred me to a specialist dentist who worked with my GP and Haematologist. I had antibiotics, before during and after the operation and I had multiple teeth and old bridges out and I now have top and bottom dentures.
I lived on tinned custard and ice cream for a few days !!!
I took me a while to get used to them. but it was the best thing that ever happened to me.
Please let us know how you get on.

Hi @Ruth2. I have follicular lymphoma and am also on watch and wait. I would advise to check this out with your team. I do if I feel anything unusual as advised by my consultant. Please let us know how you get on?

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Thku u all for your replies. I ended up in hospital new years eve as a swelling i also had on the side of my neck below my earlobe was real painful. It had just gradually been getting larger without any pain r discomfort. Im now on iv antibiotics i have to get an ultrasound n biopsys to see where we go from here. Think i will b coming off watch n wait. Eeeek.

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Morning @Ruth2. Sorry to hear you are in hospital. It must be a really worrying time. I’m always grateful for another year on watch and wait (although it does make me very anxious).
How are you feeling at the moment?
Please keep us updated when you feel ready to.

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Oh @Ruth2 I am sorry to hear that you are in hospital, I always find them very scary, lonely places, I hope the antibiotics are doing their thing.
Yes, I bet the thought of coming of coming off watch and wait is scary, perhaps it is more a matter of wait and see. My trouble would be that I have too much time to think in hospital and my mind goes off in all directions.
Please let us know how you are and what’s happening, we are here for you and so is the Blood cancer UK support line. Look after yourself xx

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Hi Ruth, I found your post very interesting as I had investigations for saliva stones 2 years before my FL diagnosis and was told to eat citrus starburst to increase saliva production!! Following my FL diagnosis I still have swelling under my chin/ear but my haematologist just says its the FL and isn’t interested at all in it. I worry sometimes I am just not taken seriously. Best wishes to you, let us know how you get on please! :relaxed:

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Hi @Ruth2. I was wondering how you were doing after being admitted to hospital?

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Nichola I spent 5 nights in hospital on IV antibiotics of various kinds. The swelling started to go down and also the pain or discomfort gradually lessened. I was then sent home with the tablet form of antibiotics with one being admistered in the community through IV. I have my review today so fingers crossed it goes well as they think now it was a bad infection in a lymph node. Thank you all for your support.

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Fingers crossed. I hope that today went ok x

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Hi @Ruth2 how did your review go today?
My husband, who does not have blood cancer, has a large pea shaped lump in his neck near his ear, he has had lots of tests and been told it is nothing to worry about.
However last year it suddenly swelled up to a very big lump that did hurt, he ended up at A&E with lots of tests and had antibiotics and the swelling returned to it’s usual size ???
Look after yourself and I look forward to hearing from you.

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Hi everyone. I got good news today. They said it was lymphadenitis. An infection in a lymph node. I was so relieved. I have another review on the 25h Jan with my haematologist. The antibiotics have reduced it a lot in size prob more than half but i am off them all now. So will have to build my immunity again. Thku for all your support.

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Brilliant news @Ruth2, yes, really look after yourself and replenish those batteries.

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Great news @Ruth2! You must be so relieved x

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Great news @Ruth2. When I was diagnosed with Follicular lymphoma in 2015 the haematologist told me that I didn’t have to try and make decisions about whether a symptom was important or not. Just pick up the phone and let the team make the decision as that’s what they are there for. That advice took such a weight off my mind. Surprisingly people don’t abuse the system and I think it helps them to know of any changes.

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That is such good advice for people @Strad thank you for sharing that.

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Wow @Strad, what brilliant practical advice, I am so impressed. Take care.