Low grade non hodgkin's lymphoma

Hi Scoobydo 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 Low Grade NHL (Stage 4a) so although my Lymphoma ‘type’ may be different from your dad’s I do appreciate the challenges of this journey rather well.

Lymphoma is on unusual type of cancer. There are over 60 types and sub-types of Lymphoma with high-grade lymphoma (Fast Growing) mostly being treated to cure but Low-grade lymphoma (Slow Growing) tends to be a life long health condition.

Do you know the ‘exact’ type of low-grade NHL your dad has?

Do you know the ‘actual’ name of the chemo regime he is having?

Scoobydo said:

the doctor did say was if you were going to get cancer this was the best one to get

Consultants will often say this but cancer is cancer. Lymphoma is the 5th most common type of cancer in the UK but unlike many other types of cancer the survival rate for Lymphoma outstrips most other cancer…….

I am 23 years in to my journey and even eventually reaching Stage 4 with a poor prognoses back in late 2013……. I am still here living the dream (See my story)

When you hear stage 4 in other cancers it’s seen as a very poor prognosis……. in Lymphoma it’s not…. yes very confusing as the meaning of Staging is so different.

For good information stuck to the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos.

They also 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 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.

You will have specific questions so do ask them and we will do our best to answer them.

Hi Mike thank you for getting back to me I'm not sure of the name of his chemo I will find out. It was a big shock to us for he was told weeks ago that it was a slow growing cancer and that he wudnt need treatment and they wud just check on it every few months then like a week later we r told its the size of a mango and he wud be starting treatment asap now so far they have said its only 1 tumor. Can you live with then Mike. I really appreciate your help x

It took over 14 years before my specific type of NHL kicked off and had to get the big gun treatments. My tumour in my neck was the size of a brick and I also had cancer in my bone marrow…… but the chemo zapped this rather well but I needed more treatment as my low-grade had become aggressive (See my story)

He could have other tumours around his body but how Lymphoma chemo works it it goes all through the body looking for any cancer build up and basically melts the tumours away….. he does need to be drinking a good 2 litres of water every day as this will help flush out the toxins and protect his kidneys.

The more you get to understand Lymphoma the more you will see that this is on the whole very treatable.

Yes ur rite Mike it's just trying to understand it. His tumor is in his abdomen. He had a persistent cough for a while was on antibiotics after antibiotics then he got chest xray etc etc ring him and told him his chest etc was clear but they had seen an enlarged lymph node in his abdomen toom a wee biopsy told him they were letting it be then the next he was in getting treatment. His chemo is 2 times a week for 3 weeks and then 1 a month to march but that cud change. Thank you so much for all your help x

Good morning...... people can 'live' with Lymphoma for many years and know nothing about it and it's often found on the back of being investigated for something different.

Do try and find out the exact name of the chemo he is having as there are lots of different types. My treatment (R-EPOCH) was over 6 days/5 nights as an inpatient on my IV 24/7 for over 120 hrs for each of my 6 cycles.

Do also find out the exact type of NHL he has. My type of Low-Grade NHL is called Cutaneous T-Cell Non Hodgkin’s Lymphoma. This is a very rare (7 in a Million) Skin Lymphoma and although it's incurable it is treatable...... so regardless of how things 'look' to be challenging most presentations can be treated successfully.

I will Mike I'm goin round to mums shortly when I drop my daughter to work il have a look and get back to you. Thank you for just listening to me rant. They r keeping him in for a week because of the reaction to the chemo so he's half a bag down this week because they had to stop it x

All part of the journey unfortunately.