Nodular lymphocyte predominant Hodgkin's lymphoma

Hi Hayleyjessie,

Watch and wait feels like a ‘non’ treatment option, but when you know a bit more, you’ll understand why. Chemotherapy is designed to attack and disrupt rapidly growing and multiplying cells. Active, aggressive cancer has those cells in abundance, but slow growing, indolent cancers do not. So chemotherapy given then will instead just attack cells in mouth, gut, hair etc and possibly leave the cancer alone. 

The idea now is to deduce if and when your slow growing cancer decides to speed up a lot and then attack it at that point. That gives the very best result with the least possible toxicity to the rest of you.

Hope that helps a bit? 

Do ask away, anything you want to know!

Hugs xxx

Hi , I am thinking that this question is for me ;)

Please remember that I did live a full life for 14 years on Watch and Wait having some skin treatments as my condition looked like I had very bad Psoriasis.

The second opinions made no difference to me actual diagnosis as this was very clear from my scans and pathology reports and these were all made available to the other teams. But it was obvious that treatment had to be done........ make a cup of tea and hit my forum name and see the full story.

But what came back was a two Stem Cell Treatment plans (from different experts) that were assessed and we followed through on them.

So when I said in my last post I had two options to follow these were:

Fir the next 30 months have maintenance chemo and radiotherapy treatments, moving onto palliative care and..... :(

or

Going down the Stem Cell Transplant route. The two teams came up with two different types of SCT regimes, so 39 months gave us time to have a go at both, the first did not work the second did.

A tip for using the forum - always put the name of the person you a posting to at the start of your reply so every one knows who the post is for ;)

Hi Hayliejessie

Yes it really is a lot to take at those first appointments. I always found it useful to have a list of questions (no such thing as a daft question here). Many people seek second opinions and it is not a sign of any disrespect to your doctors. As someone above wrote - its what you are comfortable with, depends on many factors and everyones case is different. In my case - I live abroad and have 3 young children and most of my enlarged nodes were deep in my abdomen with some being quite large. I would not have not known unless another lump in my groin hadn't presented then biopsy and PET scan. One doctor suggested I may have had for up to 7 years. I wasn't actually given an option of watch and wait but I wanted to tackle it asap anyway.

My intention is not to confuse you or have you doubting your team but just inform you of what I went through. There isn't a huge amount about NLPHL online but there are various forums in the US,which google can lead you to, where people have discussed different treatments etc.

I hope this helps you and try not to stress out too much (i know it is easy to say) 

Cam

Thank you everyone for your replys they’ve all meant a lot and I’ve read each and every one, I’ve been very busy decorating for the past 2 days, just bought a house 2 months ago (and everyone said this is the most stressful thing you will do, buy a house) clearly not haha. 

Yes buying a house does take on a new level of stress compared to a cancer journey, but lots of people won't understand it even if you try to explain it to them.

I did have Rituximab along with my main chemo and did well with it but I have not seen it mentioned being used for HL so let's look for some of the forum folks to get back to you.

Hi, 

I do know two folk on Rituximab as maintenance, it's pretty well tolerated. 

Interestingly, daughter had a few doses as after her stem cell transplant, her dormant EBV flared up and Rituximab was used to calm that down, if I remember rightly, it wasn't much of a problem. 

However, this is a fairly new use of the drug so if there is anyone else who knows about it, it would help you I'm sure. 

Hugs xxx

Hi everyone, 

I thought I’d post an update seeing as though it’s been nearly 7 weeks. I decided to opt for the treatment rituximab, everything was booked in and my treatment started on the Monday for 4 weeks. I then received a call to say they’ve cancelled my treatment because they don’t think it would shrink my nodes and they may want to add chemo. I got really upset naturally. They advised me to wait a week so they could tell me an exact treatment after they spoke to Weston Park in Sheffield. That week dragged and they called me on Friday, they advised me that if I had the brca gene they would use chemo if I didn’t they would use radiotherapy. (My father has the brca gene) I asked them what changed their mind from offering watch and wait, they said that still applies however you told us that your neck was uncomfortable and we’ve made up a new treatment plan depending on further results for that. They aren’t intending on curing it they told me that it won’t be cured.

So as a 24 year old woman you overthink and overthink until you upset yourself. The most stressful part of this process is not been told what’s the best way forward. However me and my family have decided that there basically offering treatment if I want to shrink the nodes in my neck, and I’m still on watch and wait until it turns aggressive. This was 4 weeks ago they told me and I’ve still not got any letter to send me for a brca test... my cousin who is a nurse and gives chemo, she said if they wanted to treat you they would only give you one option and they’d be getting you booked straight in for chemo! The nodes in my neck are uncomfortable but I’m not using chemo or radiotherapy to mess up my body before I have children and risk getting another cancer. I might as well decline treatment and stay on watch and wait....

The one questions I am struggling with though, is what I have.... nlphl stage 3 low grade is very very cureable so I’m very confused why they keep telling me it will never cure and you’ll live with this for the rest of your life... no where on the internet after weeks of research (naturally) have I seen anywhere it says not curable, so why can’t they cure it in me? They told me at first it’s very cureable and treatable and we expect it to respond very well to treatment, I feel like they keep changing their mind. Any advice? 

Have you read this

http://www.bloodjournal.org/content/122/26/4182?sso-checked=true

and this study may help when it comes to decisions

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4666334/

It seems the is no one simple approach to treatment, though the are models depending on presentation and the doctors preference, none of which helps you.

If as your not, getting appointments, calls information in a timely fashion, then its time to push and oil those sneaky wheels of the NHS just so you don't get lost in the system.

will most more later when I have time

john

Indolent type lymphoma's are not normally curable, unless you go down the stem cell transplant route and even then monitoring continues to ensure it does not return. Try to think of it as a chronic disease, thats what we advise people with FNHL, it gets treated on when it flares up or causes problems for you, similar in a way to asthma and being diabetes. Your challenge is being stage 3 as some say at this stage treatment is needed, then as you have found out the are options re treatment and the challenge is using the least amount of drugs first time to get it stable and inactive so that the stronger options are available in the future.

Not sure where you have been researching but the best sites to start with are the ASH conference papers, Blood Journal and NICE guidelines. Prepare the list of questions you have so they get asked and nothing gets forgotten and if your not sure about what to do next ask for some thinking time.

Hope you get the answers you need to help you make an informed decision.

Hi hayliejessie I'm in the same place as yourself, I was diagnosed last year and I'm on my second watch and wait period, it's so worrying as you probably known, it's been difficult dealing with the word cancer but,I've come to deal with it on a daily basis, but it's diff for me as I'm single and have no one to talk too on a daily basis,which is one reason I'm here.

I've been to my local cancer centre and they've been a great help and,today I went on my first walk with people  who have cancer, it was great to talk to other people while out walking.

I would like to advise you that keeping active is good for me, and it may help you,also don't be hard on yourself as that won't help.

I've been very tired all the time and I'm told it's normal as your body is telling you to slow down.

Hope everything goes well for you

Hi my son ha PLHL when he was 21, it was contained in a lymph node within his neck. His team decided that he would have radiotherapy. My question as a mother is, remission is it five years or ten, as I know this cancer can come back many years later? My advice to you is to get a second opinion, good luck x