Questions we don’t want to ask?

Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our Lymphoma groups.

I was diagnosed way back in 1999 with a rare incurable but treatable type of low grade skin Non Hodgkin’s Lymphoma (CTCL) Stage 4a and although my NHL ‘type’ my be different from your father in law’s I have experienced most types of treatments used but not necessarily the exact same drug mix.

First do you know the exact ‘type’ of NHL has been diagnosed with? (there are 60 types)

Do you know the exact name of the treatment he is going to have as there are many types and not one treatment journey will be the same.

With all these treatments if we line up 10 people with the same NHL ‘type’ on the same treatment they can all have a totally different experience.

I was having 120hrs of strong IV chemo treatment over 5 days (in hospital) eventually having 6 cycles over 4 months and honestly I had no real problems, some nausea but the meds took care of this, fatigue built up but again it was not debilitating.

Infection risks are always around more so in Covid times but good household hygiene and fresh air are a must.

Care needs to be taken with taking bugs into the house so get the word out that someone with a small could could turn into a full on infection for him…… but I still had the granddaughters round, sat on my knee, we played in the garden and in the park. My two daughters still gave me hugs…….. it’s not as bad as you first think.

Infection during chemotherapy when the immune system is most vulnerable is normally days 7-14. This is when there is an increased risk of infection……. I had over 750 hrs of chemo and never did have an infection.

The treatment information you are given to read can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all are bad.

Have you ever looked at the information you get with over the counter meds?….. it would surprise you.

On the positive side the treatments used for High Grade NHL is looking to cure….. my type can never be cured….. but 22 years on from my first diagnosis I am living a great life.

My journey was rather complicated because my ‘type’ was rare (hit my community name for my story) but I was in a bad way but the treatments used did the job and put me in remission back in Sep 2016 for the first time in 17 years….. but I had a very unusual journey.

My main word for you at the moment is ‘hope’

I was 70% covered in tumours, bonemarrow involvement and stage 4a……… but this all made no real difference to the outcomes.

Unlike solid tumour cancers like breast, lung, kidney…….. where stage 4 wold be a very poor prognosis…. in lymphomas it’s totally different with staging used to identify the best treatment and for how long……. so there is lots of hope.

Yes going through treatment can be hard work but so-able and temporary.

You will have lots of questions so happy to talk and help as best as I can until the cows come home ((hugs))

Lymphoma is very different from other cancers. It doesn't matter if the scan does show that it's in many places. The chemo will treat it all and it will just melt away. I had it everywhere, including in the bone marrow and it all went except one little bit in my chest which was then zapped with radiotherapy. I had both high grade and low grade. The high grade was cured. The low grade can't be cured and will come back. In fact it has come back once and was treated again and is gone again.

As for how to live with chemo. I still saw my grandson and hugged him except when he had a cold when he stayed away. The blood cells they worry about most are the neutrophils which go very low at each treatment and then come back up in time for the next treatment, but the other white cells are also low and take months to recover, so extra precaution is needed especially with Covid around.

Oh wow thank you for this detailed reply! I really appreciate it! 

I’m not sure of the exact type but I’m sure I can find out! 

it’s so reassuring to here that you are still able to function while going through chemo! I think I’m my head it feels like we can’t go near him and he is going to be poorly all the time! I guess we just have to see how he is after his first treatment! 

thanks again! I might come back with some questions if that’s ok! 

vicki xx

Thank you for this realistic view and advice, I actually just had a few tears of relief as I seem to keep reading that words and labels can be more intimidating and distressing than the reality! 

Thank you for putting this in such simple terms! It is definitely helping us to digest it that little bit easier! 

Thank you, thank you 

Vicki and family xx

Hi Vicki, these early days when you are trying to understand so much will initially have you thinking the worst and will often default to the ‘worst’ stories you will have heard from other family or friends about a friend or relatives experiences going through their cancer treatments and the end results. 

Lymphoma is more common than you would realise but it’s not talked about in the press as much as the ‘solid’ tumour cancers like breast, lung, kidney….

Try not to over think this, the more you talk with folks who have walked the walk you will understand that this is all so do-able….. but not always a walk in the park.

The big difference between the treatment of  solid tumour cancers and a blood cancer is it can’t be cut out (unless there is an immediate danger to life) and this is why the treatment just takes time…… think of an antibiotic….. one tablet will not fix an infection it needs a course of treatment and this is basically the same with Lymphoma treatments.

Do find out more about his type of NHL and the proposed treatment and we can help more ((hugs))

Hi some great advice already that has had a positive effective on your thinking as like many you have heard the word cancer and thought all the negative thoughts due to what you read and hear and in reality it is different and your father in laws experience will be unique to him though there will be some similarities with others once you can share more.

I had stage 4 DLBC NHL which is classed as aggressive and must be treated, other types are not do have a look at the information on the Lymphoma Action website as its a charity that deals only with lymphoma, they have some great booklets you can order or download, plus you will find some personal stories about the differing types of lymphoma. They have a range of support services that are different to those offered here so between the 2 sites you will be able to access all the help and support you will all need as a family. Do keep us update and if you want to read any of our stories click on our names and it takes you to our profile, it gives you a more in depth feel for what some of us have been through, but more importantly at this point, how we have come out the other end and are enjoying every day.

John 

Hi viccimack

The above reply's hopefully give you a head start. Learning to deal with things is a mind game and takes a while to get your head around. One thing I would sagest is keep away from doing Google searches. I very soon learned to stick with this site and Lymphoma Action uk and to avoid most of the other stuff.

Ahhh thank you John! It’s an awful thing you I’ve all had to go through and hopefully with you’re help we can provide him with a bit more relief and comfort! 

thank you for being so honest to! Xx

i will definitely keep you updated he starts the chemo next Tuesday! 

Ahhh thank you! It really is a mental mind thing isn’t it! I think we are getting f more info and trying to remain positive! 

thanks again 

Before being diagnosed with Lymphoma it was a cancer I was hardly aware of. Speaking to friends I discovered it is fairly common. It seems that it is less well publicised due to it being more treatable than some of the well known ones.

Getting things sorted in your head is a bit like the treatment it takes time but you do get there. 

I have said it before in other threads but while some of the effects of the treatment are not pleasant it is doable.I found it very tedious but I was getting treated during the first lockdown and wouldn't have been able to do much else anyway.