Hello,
Thank you for reading in advance. My dad has just been diagnosed with NHL which seems to be in his clavicle area. For some weeks it seemed likely he had lung cancer but after a biopsy it has been found to be NHL although the sub type is yet to be reported on. The lung specialist told us this and dad has been referred to haematologist.
Dad has lost weight in the last 6 months which caused the initial trip to GP. All we know is that the lymphoma is slow growing and the lung dr thought there hadn’t been much change in size in the last 4 months. A PET scan has shown no spread.
Yesterday dad has a large bruise on his elbow which he can’t remember knocking. He cannot feel any lump or pain in the clavicle area.
Whilst waiting for the next appointment I wondered if anyone can share with me thoughts on his weight loss (around a stone in 7 months although other reasons may be adding to this) and whether this indicates a worse prognosis and also possible treatment options. I m concerned he would struggle with intravenous chemotherapy.
My mum has a serious heart condition and as an only child I feel that I want to be prepared.
Thank you.
Hi Now and a warm welcome to this corner of the Community although I see you have been posting in our Lung Cancer group. I am Mike and I help out around our various Lymphoma groups.
For some context I was diagnosed way back in 1999 at 44 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 NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different to your dad’s I most definitely appreciate the challenges of this journey rather well.
You are now in the waiting stage as he gets transferred to Heamatology.
My story is very complicated (See my story) but I was actually with Dermatology for the first 14 years as I had a rare skin Lymphoma but when things kicked off I was first sent to Oncology to deal with the tennis ball tumour on my forehead….. then when my neck started to grow I put to ENT who then arranged for a biopsy on my neck and this confirmed that I now had 2 types of Lymphoma…….. then the first time I meet my Haematologist I started treatment that evening….. from my transfer from Dermatology to eventually meeting my Haematologist was about 4 months.
As there are over 60 types and sub-types of Lymphoma he most likely may need to have some more tests to find his exact type…. only once his clear diagnosis is in place will his treatment plan be put together…… there is no one treatment for all Lymphomas, there are a number of approaches.
You don’t say how old your dad is but during my main chemo I was in a ward with others in their late 80s who were having IV chemo with no issues.
The other big difference between Lymphoma and other cancers is in the staging.
The Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
As for his weight…… my weight was fine for the first 14 years of my journey but when my second type of T-Cell appeared I lost about 4.25 stone in about 3 months…… it was just my body reacting to the appearance of my Lymphoma and nothing to do with progression.
The world of Heamatology is fascinating but complicated so appointments can be full of information but these 2 links will help you get ready for that first Heam appointment.
Top tips for getting the best from your appointments
Questions to ask your medical team about lymphoma
Always around to chat and answer questions as best as I can.
At the time of my main chemo 2013 into 2014 I was dealing with Allergy related Asthma making me very reactive to many of the drugs used but that was managed well.
I also have Thoratic & Lumber Spondylosis (Spinal Osteoarthritis) and also Asbestosis but none of this held me back from having my treatments.
I am doing great, I am now 9 years 9 months out from my last treatment, I turn 70 at the end of the year and am living a great life,
If we were talking about him having Lung Cancer again we most likely would be having a very different conversation……
However Lymphoma, whatever the type and how much it’s progressed is on the whole very treatable.
Do call me Mike 
