Hi, I am new to the forum.
Background story my wife was diagnosed with low grade follicular NHL nearly 5 years ago. She has been OK but 6 months ago she started to get a pain in her upper arm which began to swell during the day, then go down during the night after a couple of months. Not really bothering her much initially it has got much worse.
She saw the Specialist nurse in August and she thought it could be a blood clot so had an ultrasound scan and a CT scan which was reported as negative so the consultant said go back to the GP. All the while there has been a mass getting bigger under here upper arm and the pain and lymphoedema getting worse.
Took another 6 weeks for another USS and he suspected Sarcoma. The Sarcoma team thinks its Lymphoma related so referred back to them. They have now taken it more seriously and has to have a biopsy tomorrow which will be very painful, and she has to have a PET scan.
She cannot use her arm for anything now, and cannot touch or move it, having to wear my T shirts and coat. The pain is horrendous and is on codeine.
If it is lymphoma related do they operate to remove the mass, or is it chemo based treatment? She is very disabled at the moment.
Thanks
Hi ian16527 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your wife……. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma (FL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - NOS NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
As you will know Lymphoma is a blood cancer and basically it can’t be cut out…… although surgery can be used if there is immediate risk to life……. Chemotherapy is one of the main weapons that are used to treat this as well as targeted therapy and radiotherapy.
Back in late 2013…… by the time I went for my first chemotherapy it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film.
My jaw had seized, my gums had swollen and were coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.
I had an initial 15min blast of chemo and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.
This is going to take time as the biopsy and PET scan are needed to check exactly what this is and also to check that her low-grade FL has not transformed into a different type of Lymphoma often a more aggressive high-grade NHL - yes this often happens.
Let's look for a plan to be put together to move this forward.
