Diagnosed NHL B-cell Primary Breast Lymphoma

Hi Anna YZ and a warm welcome to this corner of the Community although I am sorry to see you joining us.

For some context I was diagnosed way back in 1999 at 43 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 - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a number of different types of B-Cell Lymphomas…… do you know the 'exact’ type?

When it comes to Lymphoma Lymphoma is Lymphoma where ever it turns up in the body and it can be various places at once.

The Staging in Lymphoma is rather different from sold 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.

…….. your stage 1 is low and very treatable.

R-CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS (Cancer Nurse Specialist) initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had the big brother of R-CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.

My main mass was in my neck and it was basically 21.5cm x 10.25cm x 6.5cm

By the time I went for my first blast of chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.

Hair loss is one of the more challenging side effects of treatment but remember that this is temporary and more importantly if the chemo does this to your hair what is it doing to your Lymphoma.

Getting ready for your treatment us important so do have a look at the link below as it is a collection of top tips from people who have been through treatment.

    Top tips for the day of your chemotherapy

In way of some encouragement I was diagnosed when our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov but in 9 days, as a family we will be celebration 9 years since my last treatment and we continue to look forward to what else life has in store first us to enjoy.

I have said enough…… do get back to me with any questions ((hugs))

Hi Anna! 

1. First of all, please do tell your friends and family. They will be your support system. They most likely won't treat you like a sick person, but they would like to help and please do let them where you feel comfortable. This is the time to be more selfish so you can focus on your own mental well being and staying strong and spending time with your family when they can come over.

As to your hair..if you have long hair you might want to get it cut to a shorter hair style first. It often falls out when you start your second chemo session. With it being shorter it won't feel as scary when it falls out.

I remember mine falling out and because I was prepared with lots of lovely scarves and hats including sleeping ones, it was nice to get that over and done with. No hair is quite liberating! And shampooing so much quicker Get yourself a lovely range of scarves and hats whatever makes you happy. They make some many lovely ones nowadays. 

I usually don't wear make up but got an eyebrow pencil/makeup and some eyeliner. My friends told me they never realised I lost my eyebrows as well, and it made me feel so much better in the morning to feel more me. 

If you have any questions please do ask

Ingrid

Thank you mike. Appreciating your kind words. I guess I have to fight this one and there is no way to avoid. I have been dealing wit it all right but had a few down moments last week. Hopefully my reaction of r-chop is not gonna be awful. Regards Anna.

Hi Ducthie, thanks for the kind response. I don't know why I have been feeling this way... Having cancer is making me feel smaller than other people which is probably the reason I try to hide it from my friends. I know I was being silly but that's how I feel ATM. There are a couple of friends who's in Shanghai and we grew up together knew about my condition and they have been supporting me. Fingers crossed I won't feel too ill after the chemo but It's very unlikely not the case. Thanks for the support. It means a lot. Regards. 

My biopsy results and PET scan showed it was Primary Breast Diffuse Large B-Cell Lymphoma stage 1E. It's fast growing lymphoma. I can feel it's been growing bigger during these 2 months. 

Hi Anna,

Fast growing sounds scary but is often easier to target. I remember my consultants saying it was the perfect cancer to treat

I was stage 4 myself, although like Mike said with Lymphoma it is different then other cancers. I had mine mainly in my chest but also in my neck, and in my stomach. 

I understand the hiding, and as I was afraid I would the do the same I told literally everybody ( poor people!   ) as in my family no one knew of my uncles cancer as it needed to be hidden and I just refused that!

Remember that now 1 in 2 people get cancer in their lifetime. So one day they might need your support too! People love to be useful and help, and you really get to know really are your friends. 

Lots of hugs,

Ingrid

Hi Ingrid, there might be a bit more egos in me I guess. Is the data of 1 in 2 people getting cancer? I didn't know it was so common. It actually makes me feel I wasn't the less fortune one. Thanks for the advice. I'll consider it properly. 

Ok so your DLBCL is one of the most common types of High-grade non-Hodgkin lymphoma and the initial aim is to treat to cure…..

As I said earlier, when my second Lymphoma appeared in late 2013 it was also very fast growing but as has been said High-Grade NHLs respond very well to treatment and once treatment starts to do its think you will feel the difference rather quickly.

As for communicating with family and friends it’s a personal choice…… but as time goes on you may well find that you will need some people to lean on,

When I was first diagnosed and went on to navigate my 25 years journey I am continually accepting….. indeed hoping that I am the ‘one’ in our family (wife, two daughters, two son in laws and 4 granddaughters) who will have to navigate a cancer journey in their lifetime.

I think that's what they say now yes.

When I was done with treatment, one of my friends got cancer and also my cousins wife. Then last year another friend. We all rang the bell  

Get yourself some lovely books, if any hobbies take that too. I finished many quilts and crochet blankets and other things. Because why not and keeps you busy. Or maybe I am odd

Hi Anna, I was diagnosed with NHL B cell, it was in my lower back, I know exactly what you are going through, I was diagnosed in 2021, during covid, I was allowed 1 visitor, visit for an hour and bring me goodies and clean pyjamas and take my washing away, was a scary time for me as physio kept saying there was nothing wrong with me, then 7 mths later I was diagnosed with the above, in you need someone to chat or vent to just message me xxxx