Just diagnosed with lymphoma but investigations still on type. Was diagnosed after shoulder pain. Scan confirms lyphoma tumour in bone. Had prostate cancer for many years. All treatments eventually failed. So used to Big “C” and talking cancer. I assume cancer in bone bad news and advanced disease but just starting learning curve on blood cancer and welcome any advice, comment or experience from others.
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Hi @Birder I am so glad that you have found us,
If you are anything like me it is an uncertain time for you.
You ask about advice, comment or experience.
I am a non medical person but I would say that now is your chance to write down all your fears, questions and practicalities for whoever ordered your tests.
Now I know this is really difficult but try not to search the internet, or make assumptions.
You are also a unique special individual with an individual medical history so that is why your medical team are best placed to answer your questions.
I definitely did this, was to underestimated the emotional and psychological impact of my diagnosis too.
If you would like to talk to someone the Blood Cancer Support line is there for you on 0808 2080 888.
Please do keep posting how you are getting on and be kind to and look after yourself.
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Thanks Erica for your sound advice. I know that as I begin this new journey, I am going to need all the help and support I can get.
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Hi @Birder I reckon you will find the help and support on here, just keep posting
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I have T Cell Lymphoma but about 91 percent of Non Hodgkin’s Lymphoma is B Cell so by a process of elimination yours is probably B Cell of some kind but there’s loads of kinds.Plus then you have Hodgkins Lymphoma.I forgot one type of Non Hodgkin’s ,NK Cell,but it’s very rare and less than 1 percent and it’s generally lumped in with the T Cell ones as it has a lot in common with them.
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Dear @Birder,
Welcome to the forum, I am sure you will find this a really supportive and informative community as you navigate this lymphoma diagnosis.
Investigations for Lymphoma can often take some time so it can feel like a long process in the initial instance. I hope that you soon have a confirmed diagnosis and treatment plan.
I just wanted to come and say that Lymphoma is graded differently to solid tumours (like prostate) it doesn’t quite work the same, as you mention relating ‘bone cancer’ to ‘advanced disease’. I can’t comment on your individual case but I didn’t want you to jump to worst case scenario, when in Lymphoma it all works very differently. I would encourage you to await your next clinic appointment where they will be able to give you the full picture.
If you wanted to call us we could explain in a little more detail about Lymphoma, our number is 0808 208 0888.
One step at a time and I hope you get some answers soon.
Best Wishes, Heidi J (Support Services Nurse)
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Thanks Kevin. I know I need to get type diagnosed - and there are lots to choose from. Having PET/CT today.
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Hello there @Birder, welcome to the forum. I’m so sorry to read of your diagnosis and your already lived experiences of prostate cancer, wow what a double-whammy of horribleness. I’m glad you made it through the prostate cancer, you must be very resilient!
I see you’ve been met already with some lovely responses and I can’t better what dear @Erica says about not searching the internet. When I was diagnosed last year with Polycythaemia vera (PV) I found a lot of old nonsense online via Dr Google so I’d steer clear of randomly googling lymphoma for now.
I’m sure you’re adept at looking up information after your previous experiences of the big C, but I’d recommend the Blood Cancer UK research as it’s so thorough. Perhaps you’d like to read the lymphoma information: Lymphoma - what is it, symptoms and treatment | Blood Cancer UK
Maybe have a look around the forum as you’ll find many others surviving lymphoma with wisdom in abundance to share.
Do keep us posted about how you get on. Write it all down, as @Erica kindly reminds us, you never know what patterns and feelings you’ll notice and you may have specialists interested in what you note. Keeping notes is also a great way to get some of the difficult feelings out so you can look at them one stage removed with a bit more objectivity at such a stressful time.
Thinking of you @Birder, I hope you come to find the forum as supportive as I do.
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Duncan, many thanks for your advice. I am already finding the support service and the forum very helpful. Had PET/CT yesterday so believe all investigations finished. I am impatient for the reports and the type of disease so that I can crack on with treatment.
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You’re most welcome @Birder, I’m really glad that you’re finding the forum helpful. Now the hard part of awaiting test results!
It’s easier said than done but perhaps find yourself some distracting and engaging pastimes while you wait to help offset any worrying you might feel. Personally I find hiking helpful and being out in nature where my problems feel smaller.
Keeping my fingers crossed you get your results back in a timely manner and that they show good news, or the least bad news.
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Hi @Birder I think you might find that many of us are ‘inpatient patients’ but unfortunately I have found there can be a lot of waiting and not knowing, which is horrible.
Please do let us know how you are getting on.
Be kind to yourself.
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Now confirmed Diffuse large B-cell lymphoma (DLBCL). Scans show large tumour in shoulder, which was known, invasion of bone in other arm and in pubic bone. Plus, of course, in a number of nodes around lungs and breast. I have full copies of biopsy and scan reports and can understand “Stage 1V” and high SUV uptake in named areas. Are there any other key factors buried in all the “medicalese” that I should look out for?
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Hi @Birder , Thank you for keeping us in the loop. Sorry to read you have stage IV Diffuse large B-cell lymphoma (DLBCL), did you have your diagnosis this morning?
May I ask, how are you feeling now?
I presume you’ve been offered treatment, are you starting this soon?
Maybe others will add their thoughts, but in terms of what to look out for, I would suggest try to keep as well as you can; stay hydrated, eat well, get good sleep and some daily exercise. Also keep in touch with your specialist nurse to let them know how you’re doing, for example, if you find you’re not managing to eat, or sleep is interrupted if your worried, or mobility/exercise tolerance is changing, they will want to know. Keep posting here and checking in with us.
Do know you can always ring our support line if you need to.
Take care, Heidi.
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Thanks Heidi. Treatments were discussed and it looks like some form of chemo with 1 or 2 drugs mentioned. I had a lot of bloods taken this morning to check OK for chemo and am waiting for echocardiogram before starting chemo. When I know type of chemo(s) I will post again.
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Hi @Birder you have a lot to take in and “medicalese” certainly does not help.
I was diagnosed 20 yrs ago and have never managed to learn it.
I have asked my GP to translate for me in the past, but from what you say you are awaiting your medical team contacting you.
This gives you the opportunity to write down all the questions you want to ask…
Perhaps be pleasantly assertive and ensure you get the answers you need.
The Blood Cancer UK support line is there for you on 0808 2080 888
You have a lot to take in so perhaps be very kind to yourself.
Yes, please do keep posting, we are here for you to be able to say how it really is for you. xx
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Have completed all pre-treatment checks for my Diffuse large B-cell lymphoma (DLBCL) and starting R-CHOP chemo-immunotherapy next week. Consultant says at 75% because of my age. I believe R-CHOP is the standard therapy. Any advice or tips on how to prepare last few days and how to cope after first cycle?
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Hi @Birder thanks for the update.
I hope others will share their experiences.
All I shall say is try to empty your diary, organise yourself and think to yourself how important are any things that crop up.
Tell your medical team about any symptoms you get and ask them about anything that is on your mind.
Be ever so kind to yourself and please do keep posting when you can
I will be thinking of you xx
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Thanks Erica for those words of support. I will keep posting how I feel after starting the first cycle.
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Hello @Birder
Good to know you’ve had all the checks and information before starting your treatment next week. Yes, R-CHOP is actually the ‘gold-standard’, meaning it’s been tried and tested against other regimes, and nothing beats it as a first line treatment for some lymphomas.
I done a bit of searching, as I can remember a thread on this Forum which contained some amazing tips for those about to start their chemotherapy: Tips for treatment
Not sure that it is specific for R-CHOP, but in more general terms I thought it was brilliant.
Hopefully others that have actually had this regime may let you know their experiences.
Do keep us posted on how you are getting on.
Take care, Heidi.
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Thanks Heidi, I will check that link out.
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