Husbands diagnosis

I was diagnosed with nhl back in May and how I was told by the gp about the diagnosis it sounded like really bad. I have a lot of underlying health problems which affect my immune system.just started with swelling in my neck but within 3 weeks of my first chemo you wouldn't believe I had anything wrong. The one bit of advice I can give is don't get too hung up about it being stage 4 .It is the most treatable form of cancer and hopefully his prognosis will be good 

Hi Summer_129 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma eventually reaching Stage 4a in 2013........ so although my Lymphoma ‘type’ may be different from your husbands type I do appreciate the challenges of this journey rather well.

First do you actually know the exact type of Non-Hodgkin lymphoma he has, where it is presenting and the actual name of the chemo regimen?.......... there are over 60 types and subtypes of Lymphoma and many different treatments/chemos - so knowing this information is actually very important with regards to what the road looks like going forward.

Back in Dec 2013 through to April 2014 I had a very aggressive type of chemo that required me to be in hospital 6 days/5 nights on my 2 IV pumps 24/7 for over 120 hrs and I had 6 cycles so over 750 hrs of chemo in total and I did ok with it all and it did the job it was required to do.

I also have some other health conditions including asbestosis but it was all do-able. My chemo was actually a stepping stone for me to go onto other treatments but in Sep 2016 I was told I was in remission and I remain in remission to this day...... remember I have a rare, incurable had to treat type of NHL. 

Sorry to hear about your mother in law and brother in law and I can understand your concerns especially with regards to hearing he is Stage 4....... but unlike most others cancers where Stage 4 would be a poor prognosis - in Lymphoma it's not. 

Staging in Lymphomas is mainly used to identify where the condition is presenting, what the best treatment would be and for how long...... remember I was Stage 4 in 2013.

I was 44 when I started my journey and had my main full on treatments between the ages of 57 and 60....... I am 67 next month and living as good a life as any other 67 year old can live - take this as an encouragement.

The links above are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

The group is always around to help more or just to chat ((hugs))

Thank you very much for all of the above its really good to actually hear from people s7ch as yourself. He was only staged on Wednesday so I've obviously been overwhelmed but I suffer from anxiety and depression so that's not helping. It started as a lump in his testicle which was over a year ago. They treated it as an infection and it went down however 3 month's ago came back up so removed it and found the lymphoma. The pet scan has shown it has gone onto both tonsils the bottom of his neck between his shoulders and also behind his stomach they did say to start with he would be having R-chop whatever this is but have said it may change. He's having an ECG on Monday morning and then we're meeting the doctor at 4.40pm to discuss the correct treatment plan.

Thanks for this Summer_129..... yes the initial days can be rather overwhelming but once a clear plan is in place the noise between the ears will start to calm down.

Lymphoma can turn up anywhere in the body and often in different places at the same time. It is also often found on the back of investigations for other health conditions...... remember that most Lymphoma presentations are very treatable with great results and even the most stubborn presentations (like my one) can have good outcomes.

R-CHOP is a very effective combination of chemo and other drugs that have been used for years. I had the big brother of R-CHOP - R-EPOCH and it was very effective, working very quickly.

Having an ECG before chemo starts is standard as there is always a 'chance' that some treatments can affect the heart so they have a before treatment trace and can compare other traces as treatment goes on. 

At the appointment on Monday - do try and find out the 'exact' type of NHL he has as this will help us connect you better with others who have the same type.

Have a look at this link Questions to ask your medical team about Lymphoma and get your top questions written in a notebook and make sure you ask them at the appointment...... don't be scared to ask questions as you need to understand as much as possible.

Also make sure you get the contact name and contact details (phone number/email address) for the Specialist Cancer Nurse (CNS) or Cancer Support Worker that will be assigned to your husband as they are your go-to when you want to ask questions during treatment.

You should also be given an emergency 'chemo line' contact number.

Keep chatting on this thread as this all helps you get your head in a good place for going forward ((hugs))

Hi

i just wanted to support what Mike has written.There are many positive outcomes following a NHL diagnosis. Even the most stubborn cases can end with an all clear. It took three different types treatment over a period of 18months to shift mine. That was five years ago and I am now back to being fit and healthy.

As Mike says it’s helpful to have an understanding of what type of NHL your husband has. I know consultations with Doctors can be short and often confusing so try to go prepared with your questions so you can have a clearer understanding of the diagnosis.

Google is the worst place to look for information. It’s very easy to end up dashing down a rabbit hole scaring yourself silly reading stuff that is either wrong, out of date or totally irrelevant to the type of NHL your husband has.

The Cancer Nurse Specialists are a good sources of reassurance as is this forum.

NHL is a very treatable cancer with more and more treatment options becoming available all of the time.

The final bit of advice I can give from my own personal experience is to, treatments permitting, try not to put your life on hold too much. Carry on doing what you enjoy and continue to live life. In my experience that is much better strategy for keeping positive and coping with the ups and downs of an encounter with NHL

Best wishes and good luck.

Wayne

Thank you very much for all of the above I've stopped looking online as yes you are right its the worse thing to do. We had a meeting with a doctor on Friday he was absolutely lovely I did what Mike told me I wrote questions down and we got the awnsers we were concerned about. He also gave us a booklet on high-grade NHL which helped. Also after reading the positive comments on here it's helping us to see that it's not all doom and gloom and people do actually get through it. He's had his first chemo session today so here's to the road of maybe a few ups and downs but hopefully a life beyond cancer. Thank you for all of the advice it's helping so much.

Good to hear you got some answers and let’s look for a smooth journey.

What type of High Grade NHL has he been diagnosed with?

Yes and thanks a lot for the advice it helped my mind from wandering constantly and also showed me that the diagnosis doesn't always end badly. He's got the diffused large cell type. He's had the first round yesterday that was a long one but so far he feels OK so let's see how the rest goes. 

Hi Summer_129

So DLBCL is one of the most common types of high-grade lymphoma and unlike my type of low-grade lymphoma where my type is incurable and all treatment used are aimed at putting my condition to sleep for however long that is ...... the initial treatments used for DLBCL are normally seen as aiming for a curative outcome..... so be encouraged.

Sorry, but I often have a little chuckle to myself when folks say that their first treatment day was long......... my first main treatment 'day' lasted 120+ hours....... lol... but this is all relative as chemo is chemo.

I did ok with my main chemo and no real problems but the final 30 mins bag of chemo I had for my second Stem Cell Transplant was a different story and even coming up to 7 years after this I still deal with the 'leftover' medical challenges this gave me...... but I am still living the dream.

Good that he feels ok, I honestly think that most folks read through all the books/literature they are given and expect the worst of the worst but most of the time this is far from the truth.

As I highlighted before, you may want to check out Lymphoma Actions regular Lymphoma Online Support Groups specifically for Family and Carers......  as there is nothing better than 'talking' with other who are supporting family on their journey as you will then not be going through this in a 'vacuum'

Always around to chat ((hugs))

Hi sorry for the late response I think for the last few days I've tried to blank things out for a while I've got back to work which is helping. My husband has a big family and as they have already lost 2 family members to cancer there blanking all of this out. I'm not strong enough to help them though it as I have to concentrate on myself and my children. Now that the shock has set in with them they have come to terms with it a bit better I have also shown them this website and the chats in here which has helped. He has his next chemo session on the 26th and we're all staying positive a lot more than we were before coming on here so thank you for that.