New diagnosis

Hi LindaJ and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about the journey you have been on and now having Lymphoma confirmed.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but 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 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.

Sorry to hear about you having to cancel your dream holiday…… travel insurance and being on Lymphoma treatment just does not mix well

Your route to diagnose is not that unusual as Lymphoma is often mistaken to be other types of cancers…… 

Although DLBCL is a fast growing High-grade non-Hodgkin lymphoma the nital aim of treatment to cure……. Have you been given a treatment plan yet.

Although is not what you would want life to be…… In way of some encouragement…… when I was first diagnosed in 1999 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 70 at the end of this year and as a family we celebrated 9.5* years since my last treatment.

I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.

Always around to chat ((hugs))

Thanks for your reply it's always great to hear you can come through in my case yet another totally separate cancer.

I run a successful beauty/holistic business  for over 25 years and to have to announce to my lovely clients again I had cancer all over again Was devastating as they were so kind with loads of flower deliveries  and so many Get well cards. For me it's unbelievable horrid and now feel embarrassed  that I am ill with cancer again Just to say had invasive breast cancer in 2023

• Now have Diffuse large B-cell lymphoma. 

I was hospitalised  last year for 6 days and put on aclovir drips ect for a very bad case of Shingles and Ramsey hunt syndrome On the left side of my face, only last year in September. Was so bad I had compacted ear with pus and.pus dripping from left side of cheek and chin and.over 20 ulcers in my mouth.

I can't help thinking was this the start of my newly diagnosed cancer as the mass of cancer found in throat is also on the left side ?

DLBCL tends to be fast growing and most likely would have progressed much quicker then the 6-7 months that have passed….. but Lymphoma is a complicated condition so there is no one normal way that this would have developed.

Having a second cancer, rather quickly after your first is so challenging….. I am very high up the skin cancer at risk due to the years of treatment I have had…(See my story)

On the whole Lymphoma can’t be cut out so you are most likely looking at Chemo although depending on your stage where low staging can be treated with radiotherapy…… has Staging been mentioned yet?

Hi Highlander 

I have read your amazing story and can't believe you have had such a rough time

You have unbelievable courage and now at last you can enjoy being 70 years of age as obviously you nearly didn't make it !!

Just like you I have amazing support from my husband of now 43 years marriage 

P.s married at aged 20 years old (didn't want you to think I was a pensioner lol  

And lots of support from my son and daughter and my 2 lovely grandsons

Without this I feel I would just give up as have had a very traumatic childhood which affected me every day as I grew up.

It's so amazing what you can achieve with lots of love and support

Good morning LindaJ you are just a youngster….. we are 46 years married tomorrow….. my wife always says that she was a teenage bride 

We all do what we have to do to navigate this unwanted journey…… yes my rollercoaster was challenging, but the stories I read in other areas on this community are heartbreaking.

Although Lymphoma is the 5th most common type of cancer in the UK after breast, lung, colon and prostate cancers you would think that the Lymphoma groups on the community would be busier …….. but in the UK the main ‘go to’ for all things Lymphoma is Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

I also volunteer with Lymphoma Action as they run various Support Platforms where I help out.

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Dear Highlander

I am petrified just had correct diagnosis 

I have stage 4 non-hodgkin lymphoma far worse than I expected.

Cancer in my throat and tonsil has spread to vertebrae at back of neck

I have been told I will receive Pola R CHP chemotherapy  for 6 sessions over 18 weeks. I am in shock

Will lose my beautiful thick healthy hair

Will have no eyebrows and no eyelashes

This is nearly breaking me

I have now hit rock bottom

LindaJ

Hi again Linda LindaJ take a big breath and another.

If we were taking about most others cancers…… and not Lymphoma stage 4 would indeed be bad news…….

But 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 just not.

I was stage 4a aggressive 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.

Pola R CHP is a very effective treatment….. and yes you may find your hair will thin or go completely……. But you do need to see this in the bigger picture….. being a temporary time in life that will pass and you will come out the other end.

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 chemo of Pola R CHP……. 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........Pola R CHP is nothing like this.

((hugs))

This link will give you information about pola-r-chp

www.macmillan.org.uk/.../pola-r-chp

Hi Mike 

Thanks for your reply

I am still in shock 

As I am intolerant to steroid medication 

And have a red alert bracelet worn when in hospital to never have this medication 

I am told there is no choice I have to receive steroids as part of chemotherapy 

Obviously I am very scared as this medication  makes me very ill

LindaJ