Hi everyone, just reaching out as I know nothing about lymphoma and it is such a worrying time. My mum has had a persistent cough for several months & since Christmas has lost 2 stone in weight. She was diagnosed with Stage 4 lung cancer on 20th Feb, we were told it had spread to other lung too & was inoperable. They did a bronchoscopy and we were called in to say it wasn’t lung cancer but cancer in both lungs from NHL. She had a PET scan which has shown it has spread to the neck and there is a question mark over whether it has spread to the bone marrow & colon. The consultant said she would rather get my Mum started on chemo than put her through more invasive tests when the treatment plan would be the same. They are admitting her for 3 days & we are waiting on a phone call for her to go in today or tomorrow. It’s all very overwhelming and a complete rollercoaster of emotions from initial diagnosis to this point. I’m caring for my Mum & she looks to me for reassurance. At times it can feel a scary, lonely place to be.
Hi again Beehoney and well done navigating across to this corner of the community.
Sorry to hear about your mum, this will have been such a shock..... but in way of consolation the journey ahead may have been much harder if she had been diagnosed with Stage 4 Lung Cancer.
As I said in your first post in the New to Community (LINK) I eventually reached stage 4 in late 2013...... and here I am talking with you today.
The Staging of Lymphoma is completely different from solid tumour cancers like Lung, Kidney, Breast...... where a stage 4 diagnosis is a poor prognosis....... in Lymphoma it's completely different. In Lymphoma the staging identifies where in the body the Lymphoma is presenting, what is the best treatment option and for how long.
You need to read up on Lymphoma and specifically DLBCL. DLBCL is a fast growing High-grade non-Hodgkin lymphoma that is very treatable....regardless where it is presenting in the body..... and the initial aim is to try and cure..... or put her in remission for a good period of time. My type of Lymphoma is incurable but I am 7.5 years out from my last treatment, turned 67 last Nov and doing great.
You may find this link Top Tips for the day of your Chemotherapy helpful as you support your mum during treatment. There are a few options and this will depend on her age and physical well being......do come back to us once you know the exact name of the regime.
I had very strong chemo that had in hospital for 6 days/5 nights on ym two IV pumps 24/7 for over 120 hrs for my 6 cycles but I did ok with it all and it did what it was meant to do.
All the links I have put up are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Support Platforms with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
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 you can talk with someone and get support - open every week day from 10 till 3.
I am sure you have specific questions so do put them up and we will try and answer them as best as we can ((hugs))
Hi Beehoney good to hear that my post has been helpful. Being diagnosed with Lymphoma and having no pain and no lumps and bumps is actually rather normal…… this is why Lymphoma is often know as the invisible cancer.
Bad fatigued, terrible sweats can all be seen as B symptoms…… So I was stage 4A as I had no symptoms…… it’s a crazy type of cancer. The cough most likely down to pressure on her lungs
As your mum is in her 80s having R-Mini Chop is normal as it is less toxic on her body but the treatment should make a difference to her symptoms quickly (you can read my story below to see how quick my first chemo made)
Do keep reading up about the condition and keep reaching out on here and the other platforms I have highlighted as this will help you a lot ((hugs))
