Nodular lymphocyte predominant Hodgkin's lymphoma

Hi  and welcome to the Online Community but so sorry to see you join us. I am dropping in past from the Non Hodgkin's Lymphoma forum as after looking at your post I did get a 'been there got the T shirt' thought.

My type of NHL is rare also, I have lived with it for over 19 years and for the first 14 of these years I was on Watch and Wait. But as my NHL was a skin Lymphoma I did have some skin treatments. But things got out of hand 5 years back so they had to then treat me more aggressively but I am happy to say the I have been in remission for over 28 months now. Yes, they can't say that I am cursed but I am now in a better position now than I have been in 16+ years ago.

Watch and wait means it is in your best interests to keep an eye on your lymphoma and to save treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

Its not easy at first but after time you will find that you can push this to the back of your mind and just get on with living a full and happy life.

I am sure that some of the HL folks will be along but please take care and enjoy your young life to the full.

Thank you very much for the reply. It means a lot, especially whilst it’s fresh for me.

It’s nice to hear from people who, id say are more experienced in dealing with these emotions and have past the stage I’m currently at.

Thank you, and all the best for the future! 

Hi Hayleyjessie, I was rather tired last night when I sent my post as we were just home from a Ceilidh, not as young as I used to be 

I should have said that I have a friend who has HL and has been on Watch and Wait for over 40 years (he is 61) and honestly you would never know apart from being told many years back 

That must be torture for you, I think if I was told they were going to do nothing I would have gone nuts! However you have to remember that course is for a reason....The treatment for Hodgkins is very aggressive and in your case may do more harm than good. My Hodgkin's was treated with 8 doses of chemotherapy and radiotherapy and thank goodness had full response to treatment - but unfortunately have been left with heart damage from Doxorubicin one of the chemo drugs so now on 2 types of heart pills and a heart that doesn't pump properly. I have been unlucky but it can happen, so watch and wait best route if your disease is not yet active

Hi hayleyjessie

I was diagnosed with NLPHL stage 3 in June last year and had ABVD(chemotherapy) and Rituximab (target therapy). I have been in remission since September and finished treatment in November. It is a rare form of Hodgkins and is known as indolent and can come back many years after initial remission. I think there are a few different views on treatment options, depending on staging, but I believe from research and discussions with different oncologists and haematologist that the treatment I had was the standard for stage 3(above and below diaphragm). It might be worth seeking a second opinion.

Please feel free to contact me

Cam

Yes it was very late last night haha. It’s very interesting to see everyones views and experiences. And I’m sure you and your friend are very happy knowing you’ve taken on this horrible disease and come out at the other end! 

Very good advice and words of wisdom!

Thank you for the reply. It’s good to hear you’ve finished treatment I bet that’s the hardest part of the journey especially going through chemo. 

I went into the meeting intending to know the stage of the cancer. And I came out with out a definite answer as we got speaking about the watch and wait etc, and of course you forget the most important things ha!

I believe it would be stage 3 as it is also below the diaphragm but I will make sure I asked the stage when I go back to see if I want rituximab. It’s so hard to make these decisions at the age of 24. It’s all a lot to take in, and the fact I prepared myself for treatment and to be cured to then be told it’ll always be with me, it’s like I’ve had to deal with a loss it’s very hard to explain. I’m more down now then I was when diagnosed. Would you know how to go about getting a second opinion I wouldn’t want my consultant and Macmillan nurse to think they aren’t good enough with in their treatment idea for me however they have agreed this in a meeting with other professionals. I’m not sure how it all works 

Thank you 

Hi, yes it’s been quite tough. Of course you take what doctors say as a given and I have no grounds to question why their expert advice wouldn’t be the right thing to do. I’m sorry to hear about the side effects you have from the chemo, I understand it can cause complications and I’m just guessing that the doctors look at me and my age and the fact I will be having children soon and also the fact it’s very slow growing that treatment would do more harm than good and it’d still be present within my body. I’m just curious though to why some people have a cure even at stage 3 and some don’t, or am I incorrect in saying that? 

May I ask how old you were when you went through treatment? 

Hopefully speak soon.

Hi haleyjessie, your team are used to being asked if your case could be referred for a second opinion, all you have to do is request it.

Your case will most likely have been reviewed by the team of Haematologists in your hospital and the advice you are being given would be a combined opinion across the team. You would need to request that your second opinion needs to be completed by another team in another hospital.

In my case my team Oncology, Heamatology Radiotherapy, Dermatology and Stem Cell Transplant did put our my case to other centre of excellence across the country and internationally. I did also go to see one on the UKs top Haematologist South if the border who specialises in my condition but this was all done without me actually asking them to do it. Once all the information was in the MDT came up with two plans that I could follow and left the decision up to me.

Was the options given to you after the second opinion the same as what your hospital gave you?