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Hi Lindsay, good to read that the first treatment has worked, with FNHL it could just be the disease showing up somewhere new due to not have chemo or one of the other non chemo options like rituximab.

I know from my experience Durham will look after you and they will consult with the regional centre to, let us know how things go and here to help when you need it.

john

Hi John. Thankyou for putting my mind at ease, but I would be nervous about having chemo but if I have to have it, then I'll have no choice. The staff at Durham are fabulous and my consultant has a lovely manner. I've zapped one lymphoma, so I'll zap anything else that comes my way lol 

Hi Lindsay, sorry to hear that this may well be the case but this can be overcome.

Thinking back to 5 years I had to have radiotherapy on the tennis ball sized tumour on my forehead and the radiotherapy zapped it...... but almost immediately after the tumour disappeared a Lymph node on the left of my neck grew very quickly to the size of a brick so had to have some strong chemo to clear this up.

I had 6 x 5 day cycles 24/7 chemo ending up having over 720hrs of chemo (far more that most folks have to have) and the only issues I had was my hair was like snow on a hot day and an increase in fatigue.

You can do this.

Hi Mike,  What a strong person you are. You must have been exhausted after all that chemo 720 hrs??? but you've lived to tell the tale and that has put my mind at rest a little.

How are you feeling lately? I just don't feel poorly at all and when the Dr examined my neck today, he couldn't find a lump at all. Not saying it's not there and I don't think the radiologists could have made a mistake, but I just don't relish the thought of the chemo. Did you have anti sickness tablets when you had chemo?

Lindsay x

Good morning Lindsay  and it’s another beautiful morning up in Inverness.

We drove over to the West Cost to Gairloch for the day yesterday as one of our 4 granddaughters and family were there on holiday for the week - the sun was out….. on the beach…. in the sea and a BBQ. But it’s a two hour run in the car through beautiful countryside and rather tiring as there are a lot of single track road……. and lots of tourists.

Why did I just say that? I am here, enjoying life to the full. Its over 3 years and 10 months since my last main treatment and I am doing very well, am I back to who I was?........ no! I actually like the all new version of who I am.

Its important to remember that I had a different type of (Skin) NHL. Diagnosed back in 1999 and it was slow growing (hit my forum name for the full story) so it took 15 years before ‘full on’ treatment was required. 

I would very much doubt that the Radiologist made a mistake as these types of treatment is very accurate. Between 2013 to 2015 I had 45 sessions of radiotherapy and it was always very effective. But blood cancer can basically go anywhere in the blood so as with me, it went into one of my Lymph-nodes so chemo, or as a good pharmacist friend calls it - 'the educated bleach' does the job very well.

My main chemo sounds hard work. 6 x 120hrs 24/7 connected to two chemo pumps sounds horrendous but it was not. I did not go into it thinking it was going to bad, I did not take on board the helpful friend who said…..”.....and my aunty had chemo 25 years ago and she was so ill” stories.

I new it had come on so far. I never once was sick, I would even say that apart from the first few days - I did to feel sick….. as the anti sickness meds keep this under control and if one does not work they have others to use and this was what happened in those first few days.

During one cycle I developed Helicobacter Pylori, a bacteria that developed ulcers and stomach inflammation but Antibiotics took care of that. I was in hospital for 5 days then home for 16 doing this 6 times......... but a lot of chemo treatment are do as an outpatient only being  in a treatment suit for a day then home for the rest of the time.

Lets see what your team are saying. Its never good to guess as this feed anxiety - deal with facts and always remember to keep your eye on the greater good in all this.

Always around to listen and help out.

Hi Lindsay,

Sorry you find yourself here with us, but you can be sure of good information and support here. 

I had one smallish lump, ever.  It vanished in 3 weeks.  I didn't feel ill at all.  But there was other stuff in my body that I couldn't detect and it had probably been there for years.   Fortunately, the scans are very good at finding everything.

Chemo is needed when the disease is not confined to one place.  It's the only way to hit everywhere at once.  The courses can be tiring, but other side effects vary according to your individual package.  I had no nausea or vomiting and never saw anyone else on our busy unit ever being sick.  Not once.  The newer antisickness drugs are phenomenal and their effects last for days, not hours. 

Your care team will get you through.   Mine did - I've just finished my chemo and have no signs of disease now.   Very best wishes for a successful course of treatment!

C

Hi C. Later on Friday, The Nurse Specialist phoned to tell me that the Drs had gone over the scan results again at a meeting they went to and said it was only low grade, so it's just now a matter of watch and wait. No chemo thank god, but I'm realistic enough to know, things could change. For now, I'm thinking positive. Having a good think to myself last night though, I'm going to ask if another course of radiotherapy couldn't get rid of that one like it did the fist one. Can't hurt to ask. Hope you're having  a good weekend.

Lindsay x

Good news, Lindsay!  Sounds like you're in their 'watch and wait' category.  

It makes sense to me not to treat unless and until it's needed.  Some of us have lymphoma for years undetected, others are much more aggressive and need immediate treatment.  The sheer variety of this disease is mind boggling.  Some treatments are tough and toxic, all of them seem pretty tiring and disrupt your normal life for a period. 

Meantime, 5 weeks out of chemo and 7 days out of a surprise hospital stay, I notice my energy levels are definitely improving.  Haven't fallen asleep on the sofa for a fortnight and I find I can tackle those long postponed household and gardening jobs.  It sounds so boring like that, but it's a great feeling!   I do envy those athletes among us who carry on and stay fit throughout treatment and those who work full time.  Deep respect!

Cecren

Hi Lindsay, I do hope you are having a great weekend.

'watch and wait' is a good place to be as it says that your condition is behaving it’s self and at the back of your head you know that there are tools in the Consultants bag of tricks if they are required.

There is a balance as to the amount of radiotherapy you can have in any one area but yes, ask your Consultant.

I was basically on ‘Watch and Wait’ for 14-15 years so it caught me out when my condition decided to miss behave, but I always knew that there were treatments available to deal with it.

((hugs)) 

Hi Cecren, Hope you're having a good day and improving all the time. Being in the watch and wait territory is ok but now I'm wondering why they just don't zap this monster with radiotherapy, like they did with the first one, but as you say if it ain't broke, don't fix it. I consider myself to be in semi-remission and that makes me happy, so I can plod on with my daily duties with absolutely no fatigue now. 

Why did you have that surprise hospital admission, if you don't mind me asking? Take care.

Lindsay xx