I’ve been recently diagnosed with solitary plasmacytoma and chronic lymphocytic leukaemia. I just wanted to introduce myself, but also to mention about treatment. They’ve decided to use radiotherapy on the growth, which is below my chin. I guess I’m just looking for a bit of reassurance about the experiences of any others who’ve been through the same and have come out all right.
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Hi @markb I really am glad you have found us and welcome.
I hope someone will be able to share their experiences for you.
I wonder if you feel that you have any fears, questions and practicalities that you would like to ask your medical team, if so, I find it helps me to write them all down so I do forget anything.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago.
The Blood Cancer UK support line is there for you on 0808 2080 888
I look forward to hearing more about you, take lots of care and be kind to yourself.
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Thanks Erica for the information. I do have fears and questions, and I’ll write them down, as you say.
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Hi Mark and welcome to the forum.
This is a great place to share experiences so I’m glad you have found us.
I was diagnosed with lymphoma 7 years ago and had radiotherapy to my head and neck. I had 12 sessions over 2 and a half weeks.
I’m happy to answer any questions that you have. I know it can be quite daunting.
Have you had the process explained by your team? When does your treatment start?
I came out the other side and am on active monitoring 7 years on 
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Hi Nichola75, thanks for your comment and I’m so glad to hear that your radiotherapy did its job.
The plan is for me to have 25 sessions starting 4th November for 5 weeks. Much has been explained to me but whenever I get back home I look over the information I’ve been given and wished I’d asked more!
I’ve been warned of certain and possible side effects, such as fatigue, mucositis, pain, mouth ulcers and sores, and a wound where the growth is under my jaw bone. How long did side effects last for you and were you advised on how to mitigate these? Also have your last 7 years been free of any longer term side effects? This whole area is completely new to me, and I can’t deny some anxiety.
I have to say that the staff in the hospitals I’ve been to so far have been very friendly and helpful, and I’m sure I don’t really need to worry. I just feel I’d like to know a little more about what others have experienced.
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Hi @markb.
It’s so daunting isn’t it. I had so many questions and always had lists to ask when I went for an appointment. Make sure you write all of yours down so you don’t forget.
So, obviously you are having more sessions than me so side effects may develop more as time goes on and they may be different to mine but I’ll share what I experienced in my 2 and a half weeks.
Have they advised you get any dental treatment done beforehand?
The first week/10 days I tolerated it well. For me, it was getting used to wearing the mask, I don’t know if you’ll need this? I carried on working but in hindsight, I underestimated the emotional impact and how tired the daily visits made me, I wish I’d worked from home. They try to accommodate you with times but it doesn’t always go as you want.
I developed mouth ulcers on about day nine. They were painful, there is no getting away from that, but there are medications to help. I tried a range of mouthwashes until I found one that worked for me and also took liquid morphine when they were at their worst. I lived on cold milkshakes for a bit as eating was hard.
But, there is light at the end of the tunnel
and just keep remembering that. The ulcers did subside and eating went back to normal a few weeks after I finished treatment.
In terms of long term side effects; I get prescribed fluoride toothpaste as suggested by my dentist. I do suffer from a dry mouth and pain on my face but that was more to do with the operation to remove my parotid gland rather that the radiotherapy.
I lost a patch of hair on the back or my head but nothing major, just a certain spot.
I preferred going on my own, purely because I was more emotional when my husband came with me. That’s just the way I handled it.
I can’t think of anything else at the moment but ask away if you have more questions.
Just don’t underestimate the toll it can take and I would say just go with how you feel and what your body is telling you. If you need to rest, rest. If you want to do something nice to cheer yourself up, just do it. It’s a big deal and don’t minimise that X
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Thank you so much, Nichola, for such a complete reply. Yes I am having to get some dental treatment with both my own dentist and the hospital’s maxillo-facial unit. My dentist to make sure all is okay, and the hospital seems to want to take a tooth out. Also, yes, I do have to have a mask, which they fitted me up with about a week ago.
It’s encouraging to hear there’s light at the end of the tunnel. It’s the difficulty eating and pain of the mouth ulcers that are worrying, and, I’ve been told, the admittedly fairly uncommon (<10%) long-term damage to the jaw bone in my case.
I have to admit I’d not thought about the emotional effect of all this. I guess that’s something to be faced at the time. Thanks for all your advice.
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The doctor did give me some drink supplements when I was struggling but I preferred milkshakes!
Let me know how you get on with the mask fitting and please ask anything at any time.
Just keep talking to your team. They are there to support you and no question is to small or to silly to ask.
Keep us updated on how you are doing
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Actually I did not face the emotional side at the time, nobody thought about it, @markb and 20 yrs later I can replay the day of my diagnosis as if it were yesterday.
I actually now accept it and it does not worry me.
I have Chronic lymphocytic leukaemia (CLL) and had a number of teeth out successfully with my specialist dentist and haematologist working together.
I lived on tinned custard, warm or room temp, and ice cream,
My son is into Heinz tomato soup.
Look after yourself and look after yourself you are going through a lot.
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