I was diagnosed on Friday with Lymphoma. My doctors expected it to be squamous cell carcinoma as I drink and smoke. To my shock it was Lymphoma again. I first had it 14 years ago and received R CHOP. This was completely successful (until, of course, it wasn’t). With my limited understanding I find it difficult to believe that this refractory as the time period is too long. However, I can’t really find anything on the internet that discusses this. I’ve found info on Follicular B cell lymphoma but I’m pretty sure mine is DLBC. I was wondering if anyone out there has any similar experiences or could some advice.
As you can imagine there is so much I want to know: not least prognosis!
Hi @LauraMM and a big welcome to the forum - for the second time!
Ignore my response to your comments on a different thread. This answers lots of my questions.
It is a really long period of time isn’t it and when you read about it, refractory normally happens with the first couple of years with DLCBL and you say the treatment was completely successful? What have your team said about it returning?
I have follicular lymphoma so I can’t comment on your particular diagnosis but I hope somebody else on the forum can share their experiences.
Here is a link to some information. I hope it’s useful (you may have seen it already) Diffuse large B-cell lymphoma (DLBCL) - what is it, symptoms and treatment | Blood Cancer UK
Your thoughts must be all over the place and it must be really difficult to process everything at the moment, I know I’d be in complete shock. Is there a plan in place on how to progress?
I’m really glad you have found us. Please keep sharing. We are a good bunch who are always here to listen and support. We all understand that moment when we are initially diagnosed or when it returns and can relate to that. Remember the support line is there if you need it to.
Please take care of yourself and be kind to yourself. I look forward to finding out more about you X
Hello Nichola
Thank you for your post. I haven’t met my onco team yet as I was only diagnosed on Friday. I have been booked in for a Pet scan on Monday so obviously that will aid the staging process. I suspect the reason they haven’t called me into clinic just yet is that they want to build up a full picture. I have had a MRI on the head and neck so they’ve got a really good picture of the primary site (right lymph - the size of a small planet:) and the tonsil. I think what’s dawning on me as I idiotically go from one site to another is that this is rare and the outcome is less favourable. I also get the impression that R CHOP won’t be used. So. for me, presently it’s all about good information and don’t worry I’m only using reputable websites. That said, however good these websites are they cannot talk about me specifically. Any thoughts would be very greatfully received.
Apologies in advance for making this post ‘all about me’
I think you’re allowed to make it all about you!
It sounds like you have a really good team who are making sure they do all the tests etc before they feedback to you. At least then, you will have the full picture. However, the waiting game is not fun at all!!!
I completely understand the need to find out more. For me, knowledge gives me some control. It’s great to hear you are using the reputable websites - google isn’t always your friend is it!
All I can say is that each of our journeys are so very individual. Yes, we share some similarities, but I think, in regards to you, it’s only your team who may be able to answer your specific questions about prognosis, and even then there is only so much they can tell you. Things change all off the time with treatments etc. It’s the unknown that’s so hard. As hard as it is, perhaps leave that particular search for information until you know more? ‘Yes’ I hear you say, thats easier said than done!
Have you got a good support system around you?
I have an excellent support system thank you. And about you? Your follicular? My understanding is that Follicular is often indolent but can be aggressive. If you don’t mind me asking, what is your situation?
That’s really great and makes such a difference.
So, I was diagnosed at 41. I had a swelling in my parotid gland. Op to remove it and then radiotherapy. 9 months after that, during a follow up PET scan, it was picked up in my abdomen. It’s indolent and Im currently on active monitoring with bloods and consultant appointment every four months.
and how are you feeling? ie does it affect your energy levels and more generally, how does it affect your life. Can you still work? - raise little brats (err I mean children). How long have you been dealing with 'mare?
So, physically I’m fine, apart from the tiredness but that’s due to lack of sleep because the quiet times are when I find it hard not to think about it.
I find it more of a mental challenge. I know active monitoring is the right course of action. However, living with cancer and not treating it is hard, I like to be in control!
I work in a primary school and find I’m less able to manage stress. 2 children aged 12 and 15. Oldest knows everything. I’ve worked really hard on getting a better work life balance and I’m making improvements, albeit on small steps.
I look well and I think others find it hard to understand what it’s like for me, it’s a hard one to explain.
I try different things to look after my well-being. Some days are better than others and I’ve come to accept that’s part of the journey. 4 years on, I take it day by day X
Hi @LauraMM I have also replied to your other post and I have read through your posts with @Nichola75. It is difficult to know what to add but I am so glad that you have found us so quickly. It must be such a shock for you so please be kind to yourself and take lots of care.
At the moment so much must be up in the air for you, all the unknowns and the never ending waiting.
Perhaps now is the time to write all your fears, thoughts, questions, symptoms and practicalities that you want to ask your onco team when you see them.
I think you are probably right that you won’t get the appointment till all the results come back and they have a full picture.
Research and trials have come on so far in the last 14yrs so it would be difficult to speculate on the way forward.
Yes, the support line details are above if you would like to speak to someone and we are here to support you.
Be so kind to yourself and please keep posting how you are.
One thing I’ve learnt being (unfortunately) an old hand at this is that it’s so important to push yourself forward. Last time, I thought well they know they’re doing; they know best; they’re busy etc… This time, whilst not 'jumping and down, kicking and screaming, I will phone and push for info. I found out that my PET scan results will not be reported on for a week and then clinic. I phoned today and said that I’ve got lots of questions and I’ll go mad waiting for two weeks.
I spoke to a wonderful Macmillan nurse who confirmed that it is High grade B cell lymphoma. The recommendation is salvage chemotherapy (Gemcitabine / Cistplastin) and possibly stem cell transplant. I haven’t looked these drugs up yet as I’ve posted here first.
My tonsil, which is giving me some gip, has been measured via MRI as 3.73.65.6! No wonder I feel there’s something stuck down the back of my throat. After I have my Pet on Monday I can request steroids to, presumably, prevent me from choking.
I’m not feeling very chipper today and so I don’t have any vaguely amusing anecdotes. This is super scary monsters.
Hi @LauraMM yes, today must be super scary monster stuff and thanks for letting us know so quickly.
Yes, I think most of us learn to be more assertive and pro active over time.
I bet your tonsil is giving you gip and I would also have a mental picture of mine continually to which might not help me, I see things very visually.
I can remember when I was diagnosed I just wanted to pull the leukaemia out of me.
I have also found Macmillan are wonderful and I have heard of people getting limited counselling through them too.
I am not surprised that you are not feeling very chipper today and that is so natural and I am so glad and honoured that you haven’t done what I usually do and put the happy, smiley mask on. I am so pleased that you can be really honest with us.
Take lots of care, keep posting and be ever so kind to yourself.
And you know what - it’s fine not to feel chipper. You do what you need to do today to take care of yourself, and if you need to, do the same tomorrow. Like @Erica said, well
Done for not pretending you’re ok - who would be!
Sending lots and lots of love x
If I had leukaemia I’d want to pull it out of myself as well (not least because I can’t spell the bloody thing). When I’d written the dimensions of the tonsil I suddenly realised that 65 cm was a bit far fetched! That would go down the length of my body. I’ve always felt (based on no evidence) that Leukaemia is far worse than Lymphoma.
To speak to visualisations, When I got Lymphoma the first time I imagined a marquee (perhaps at Ascot or some such). There are millions of people outside it and hundreds of thousands inside. To be inside the marquee is to have cancer but the impacts and prognosis are not homogenous. Because I was stage 1 lymphoma, I saw myself is just inside but I could see people at the centre and those were the people that were not going to make it. Now I feel a little further insider the marquee but nowhere near the centre.
The road ahead will be difficult and I do expect to get sick and there is still so much unknown. I have managed to speak to a macmillan nurse and she has confirmed that the onco doctors are thinking GemCys. I have a Pet on Monday and a clinic appointment on the 31st. At that point the full picture should be known (at least at the diagnostic end).
I’ve only used this forum for a few days and its already becoming a lifeline. I thank you both
Oh @LauraMM, great visualisation for me too and we are all in the same boat, no luxury liner, because it is so supportive.
Please do let us know how your pet scan and clinic appointment go.
Look after yourself and please keep posting.
I sort of self diagnosed a lesion I developed as a form of skin cancer like; melanoma, squamous cell carcinoma or basal cell carcinoma because it looked like them but it wasn’t any of them it was a tumour of a t cell Lymphoma called Mycosis Fungoides.All of these things look pretty similar and none are out to do you any favours!I think that the difference is with skin cancers the skin itself in cancerous and the cancer is growing inward (if it gets the chance)but with lymphoma it’s in the blood and growing outward and the tumours are a mixture of stuff being pushed out of the body but unlike say melanomas are not in themselves cancerous.Mycosis Fungoides is a t cell Lymphoma and therefore incurable but I think that b cell Lymphoma is easier to cure?with melanomas and their ilke I think that they can cut them out and as long as they are not at stage 3 or 4 then you’ll probably be ok but of course due to genetics you’ll have a high chance of developing new ones.well good luck with yours.
Hi @Kevan7. It’s amazing how we think we have one thing and it turns out to be another. So many different variations of lymphoma. I have B cell Follicular lymphoma which is seen as a chronic illness. It’s not curable but manageable. The more aggressive have more chance of curability (I don’t even know if that’s a word )
How are you doing?
Thanks @Kevan7 thanks for your vivid description, that is how my mind works.
I remember when I was first diagnosed with CLL wanting to pull it out of me.
I have had both CLL and skin cancer on my head, apparently down to fair hair/ skin and exposure to the sun in my misspent youth.
I know GP’s are often criticised but diagnosis is often not easy for them.
Take care and keep posting.
I have a little tumour, about 1.5cm across,on my breast bone now and I’m sending some photos to the Rare Lymphoma Clinic.I have looked at pictures of melanomas,basal cell carcinoma and squamous cell carcinoma and it looks pretty similar but apart from the ragged rough melanomas they’ll all look similar anyhow.Most likely it’s a tumour caused by the Mycosis Fungoides but I have read that second malignancies slip in once one cancer has damaged the DNA.However it’s just coming back to me that it’s very similar to several button like tumours that came on my left hand about 2 years ago which where surgically removed and biopsied and one returned the cellular alterations caused by Mycosis Fungoides.yes people knock the doctors for misdiagnosing these rare Lymphomas but they are incredibly rare for example Mycosis Fungoides is about 6 people in a million so most GP’s wouldn’t have seen it before and probably skipped across it briefly in medical school but obviously they are going to focus on the more common stuff like broken arms.as Mycosis Fungoides in it’s early stages looks like ezecma or psoriasis a GP,or even a dermatologist,is going to assume that it’s the most likely candidate but if something bad happens then they’ll get blamed even though it’s not really anyone’s fault.
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