Anyone have experience with lymphoma?

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I was just diagnosed yesterday. Went to the GP a week ago for a lump on my chest, X-ray & CT scan have shown a large mass under the lymph nodes in my chest. Blood tests have shown I'm very anaemic, CRP is 50.5 and pretty much everything in my full blood test is 'abnormal'. Next step is a biopsy to determine what type of lymphoma it is.
Honestly I was relieved it wasn't lung cancer as they expected, because my gut feeling is that lymphoma is much more treatable. I personally feel quite positive but DH and family are all taking it very badly so I'd love to hear some real life positive experiences if anyone has any!

Is there a Macmillan centre at the hospital?

They've loads of information and practical help including benefits etc.

I know a bit (not a Dr but work in a related field).

Assuming it's an acute lymphoma, it's very treatable. There are other types like follicular lymphomas that I don't know about, but acute lymphoma (Hodgkin's or non Hodgkin's) will require chemo and maybe radiotherapy. Well tried and tested treatments with excellent success rates. Scans can look scary at the beginning but it usually responds to treatment quickly.

I hope this is a bit reassuring

My mum has had it twice (ages 41 and 49) - non Hodgkin’s lymphoma both times. First time was in her neck so caught early and treated with radiotherapy. Second time in her chest area. So big it had caused a tear in her asopogus and she’d had fluid leaking into her lungs. When then drained it there was like 2 ltrs of fluid. She just thought she was getting out of breath because she was unfit. That was a long slog of chemo and bone marrow transplant but she’s now mid 60’s and been clear for more than 10 years. She was off work for about a year and a half all in as she had complications due to her immune system. Good luck! Get a strong network and keep positive xx

Thank you, this is reassuring - most stories I hear seem to be of recovery. I suppose we probably have a tough few months coming up, but at least there is hope!

Hubby was diagnosed with Non-Hodgkins lymphoma last year. Had 6 courses of chemo and is now in remission. I won’t lie, the chemo was tough… but the outcomes are good for this type of cancer.
As soon as you start treatment ask to be referred to a dietitian because hubby had major problems eating.
A small portable fan and a v shaped pillow also helped.
And he had a PICC line which stayed in all the time. Wouldn’t opt for that again as it’s really hard to shower or bath. Would go for a cannula at each session.
Hope that helps a bit, good luck x

My son was diagnosed with Hodgkins lymphoma 8 years ago. By the time he was diagnosed he was at stage 4 and very ill.
He had 6 months of chemo and started to show a huge improvement after the second cycle.
He's been in remission ever since.

Good luck 💐

I'm a full time carer for my son and no one else other than DH is capable of looking after him. Am I kidding myself to think I'll continue being able to look after him if I have chemo? DH can cover for me, but then he'll miss work and he's the only earner... his work are understanding but I imagine there will be a limit.
And does chemo definitely mean hair loss? DS can only fall asleep next to me holding on to my hair...

I had Hodgkin's lymphoma in my twenties (about 9years ago now). I had 6 months chemotherapy and have been fine ever since! Chemo is tough but I didn't have any side effects - I mainly felt a bit rubbish for a week afterwards (I called it a chemo hangover). Everyone's cancer/treatment is slightly different. I think I would have been able to continue to look after my child (if I had one back then - I now have a three year old!) But not on chemo days.
Not all chemotherapy causes hair loss and not everyone reacts like that. But I lost all my hair. It grows back and there are some great wigs out there.
Best of luck with everything - there are amazing treatments out there.

Ok thank you. I guess I need to wait and see what treatment they recommend once they know what type it is

Assuming an acute lymphoma you would most likely lose your hair yes sorry. I have a sensory seeking DS who needs to hold my hair so I do get it. You will be offered a wig - if you cut your hair off once it starts shedding you could keep a ponytail of it for him to hold? Sorry if that's a stupid idea, it'd probably work for my DS in a pinch but all are different.

It is probably prudent to assume there will be times you won't be able to look after your DS. I don't know what that will look like for you but if there is a chance to start training someone to step in/acclimating DS to having some care from others, do it now. If you get hospitalised with an infection someone will have to be able to step in. Even if you don't, you'll either be inpatient for chemo for 3-5 days at a time, or doing long days in a day unit having chemo, maybe being at hospital 8.30am to 9pm. If it comes to it your DP may have to get signed off sick with stress, often sick pay and processes give more time off with pay than caring for someone.

All the best.