Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Lymphoma diagnosis

Paul1414
Posted by

Morning John,I have not been diagnosed yet so my GP only

option.

Paul

D Paul Bland
anxious76
Posted by

My wife has had her biopsy a few days ago and we have an appointment next Tuesday to see the consultant haematologist to hopefully discuss diagnosis and treatment 

Had a scare yesterday as my wife has been struggling with her breathing over the last few days. Yesterday her left arm began to swell so I took her to A&E where they carried out an ultrasound and chest x-ray

They think that a lymph node in her armpit is putting pressure under her arm and there is a build up of fluid in her arm. They also think that lymph nodes in her chest may be putting pressure on her lungs and that is restricting how much air she can take in

She has a small amount of fluid on her lung but not enough to warrant it being drained

She has been given a strong course of steroids (Dexamethasone) to hopefully relive the inflammation and our consultant wants us to see him on Tuesday regardless of whether the biopsy results are back

We just want to have a clear diagnosis and start on any treatment now as the waiting is awful and all these symptoms are beginning to really scare my wife

Just hope that when the treatment begins, she will start to feel a bit more normal as she is restricted in what she can do with the lack of breath

Thehighlander
Posted by

Sorry to hear this and a good number of us will totally understand the challenges these times bring.

Getting the treatment spot on is so important and as you have come to realise this takes time but its good that she has been given steroids as this will help in this in-between time.

The biopsy is one of the main tools in the diagnosis as the pathology will give stage and the exact type. But her Haematologist may start her on some treatment to get her through until all the information is in and reviewed. 

This is what happened with me back in 2013 three days before Christmas Day and the initial hit got me through our family Christmas with me coming back on the 27th to start my main Chemo.

Hang in there, these days do drag but once treatments starts she will see the benefits, usually rather quickly.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

anxious76
Posted by

Thank you so much for the support Mike. Means a lot to us both

moomy
Posted by

I agree with Mike, once treatment begins it’s astonishing how quickly these symptoms recede, it’s just the waiting game till then. Hopefully the steroids will help reduce the problems till your wife has a diagnosis and treatment can start.

waiting is the pits but they do need to know exactly what is wrong so they can make a proper plan of attack so to speak. 

Hugs xxx

Moomy

anxious76
Posted by

Latest appointment today with ENT surgeon to see whether they were to look at removing any more of the neck node for further testing

Surgeon had the results from CT scan and initial biopsy so sat ya down to explain what had been found before we go to see Consultant haematologist next Tuesday 

it looks like my wife has Non-Hodgkin Lymphoma which looks to be at Stage 2. It is in both sides of her neck, in her chest and her armpit. She also has possible gall stones and fluid in her lung and around her heart as well as some squashed blood vessels

Doing any surgery on her neck would prove risky with all these things going on so will have to wait to see haematologist on Tuesday to look at treatment options

has anyone had any first hand experience of Stage 2 Lymphoma and the treatment options/success rate?

johnr
Posted by

Hi again, now you have your update it helps a little but its still hard to give clear advice as you don't know the type of NHL and when you sub divide them the are 80 differing types, but they do fall into some clear categories mines was DLBC which is a B cell type lymphoma whilst Mike had a T cell lymphoma, after that the is aggressive - fast growing my type or indolent - slow growing which was Mike's type. 

So the stage informs the treatment plan ie the number of treatments needed, as for treatment options that very much depends on the type of NHL and as for success rates, I think we have said earlier don't think about that as we are all individuals and these days due to all the advances, most people respond well to treatment and whilst many treatments are chemo based not all are these days and the drugs are very clever and can help the immune system fight the disease as well.

Thee is a separate NHL group that you might want to consider joining once you know the type.

regards

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thehighlander
Posted by

Hi again , so a little more further along the road.

I was careful in my first post not to make the assumption as to what of the 80 Lymphomas this could be.

I was diagnosed with my type of Non Hodgkins Lymphoma in 1999 and was eventually classed as stage 4a2 and I am still around. Remember that in Lymphoma, stage numbers are nothing like in solid tumour cancers and there are lots of treatments depending on what type it is and how it is presenting.

Due to my growth on my neck (rather like your wife) my biopsy had to be done under a general anaesthetic due to some of my main veins being trapped in the mass. 

Once you have a clear picture as to the type we also have a few dedicated forums:

General Non-Hodgkin lymphoma

T-Cell Lymphoma (my type)

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

Hang in there, this will improve. 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Reanswolf
Posted by

Hi

My son has Hodgkin Lymphoma (but they are all lymphoma), when we took him to GP he had just one lump under his arm, specialist at hospital checked him over thoroughly and didn't think it anything to worry about, but arranged a follow up scan 6 weeks later, by which time they found lumps in both sides of his neck, his collarbone ((these are common areas for lymphoma), and in his spleen (also common location). So by the time he was diagnosed he had 5 areas (though one on one side of the neck was very small). He was classed as stage 3 as he has lymphoma either side of the diaphragm.

It is stage 4 if it has gone outside the lymph system to other organs, so stage 1 and 2 generally have better success rates but they are all good rates these days. The mediastinum (around the chest) is a very common area for lymphomas.

My son has had two lots of treatment & an interim scan and virtually all has gone (if not all). So don't be alarmed, the lymph system is like petrol or oil going round a car, so it is often the case that it can be found in different locations of the lymph system. Around half of cases are classed as advanced (stage 3 or 4 in Hodgkin Lymphoma) where it is in several locations, though I am talking about HL, I'm not sure about Non-HL, but I wouldn't be surprised if it is very similar. Its hard to diagnose as there are often few symptoms until its established in more than one place.

I'm just a lay person so these questions should be directed to them, but the chemo basically goes round the lymph system targeting it all, so don't be too alarmed that it is in several locations.

Stay as calm as you can (says the man who has spent 3 months panicking :-), because they do know what they are doing, your specialist team will sit down and discuss your wife's case as they do with everyone, to ensure they get the very best treatment.

Nick
HLmum
Posted by

Hi anxious76

sorry to hear about what you and your wife are going through.

And like many other members have said things will look up, it seems impossible now but you will get through this together. Try and focus on getting through one day at a time.

im mum to a 13 y/o with Hodgkin’s lymphoma stage 4 but prior to my son being diagnosed my mother in law was diagnosed with Non Hodgkin’s lymphoma last year.

so a lot has been going on in this past year, it’s been a real tough time but things have slowly got better and we’re getting some kind of normality and routine back in our lives.

With my mum in laws non Hodgkin’s lymphoma she too had to wait for biopsies and results and it was terrifying, however once a treatment plan was made (6 cycles of r-chop chemotherapy) our focus was on getting through it one cycle at a time, one day at a time.

fast forward 6-8 months she completed all her chemo and radiotherapy and is near enough back to her normal self.

my son was an emergency admission and things happened very fast but he’d been poorly for ages before diagnosis and just getting the diagnosis helped us understand why he was feeling the way he was and we looked ahead at focusing on his treatment and getting him better. 

Hopefully things will be clearer to you soon and as unreal as it sounds now it ‘will’ get easier for you both.

all the best 

x