Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

Starting Treatment 27th December

Thehighlander
Posted by

Well done on your daily drinking , one of the hardest, but most important things we all can do to keep the body systems working well. 

Once you are looking in the wing mirror to look back at this part of life you will appreciate even more not having to go to the toilet at silly-o’clock.

During my Stem Cell Transplants I was retaining water so I was given stuff to make me go and it was always during the night....... next morning with no sleep my record of pee pots lined up on the floor was 11 

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

BedrockFred
Posted by

Peter, not drank any alcohol since my diagnosis and not missing it at all

I was told by my haematologist it would be best to leave alcohol alone

I drink lots of water, caffeine free tea and coffee, sugar free squashes, caffeine free diet Pepsi, horlicks so plenty of variety 

Got a couple of drinking bottles one is always by my side 

Together we are stronger 

BedrockFred
Posted by

Well into Chemo week as we now call it at home, hospital visit pre chemo appointment on Wednesday them cycle 5 on Friday

Feeling good right now and dog walks have got longer up to three and a half miles, no doubt after Friday they will come down again, as fatigue seems to affect me a lot, I still feel tired later in the evening and bedtime is always before 9pm but do rise early around 6am although never been a "lay in" person 

Seems a long while since my treatment started but then I think cycle 5 already and then hopefully only 1 to go 

Still drinking plenty ( no alcohol or caffeine) at least 3ltrs a day and am certain that it really helps along with the walks and exercise.

Hope everyone else is getting along well thinking of you all every day, many many thanks for your support too, really does help so much

Those in front of me on their treatment what happens after cycle 6, all I know is that I will have a scan about a month later then if all is ok I will be put on a 2 year maintenance programme, what does that 2 year plan consist of?

Paul (Fred)

Together we are stronger 

Peter1954
Posted by

Hello Fred,

Glad you are feeling good still and managing decent walks each day, my mileage is increasing now and today we are off out for a few hours walking (a couple of breaks thrown in). My plain water drinking has dropped a bit but having a lot more tea as I find it eqsier to deal with at the moment (think it could be just boredom of plain water) I mentioned it to my specialist nurse and she said it doesn't matter as long as we get a decent amount of fluid into us. So for me its Earl Grey, peppermint, green tea, and ginger.

I haven't a date yet for my 1st maintenance but have been told I will hear this week and will also be having a meeting with my team about what to expect.

Good luck Friday

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

BedrockFred
Posted by

Good luck Peter please keep us informed on your maintenance programme, I have no idea what it entails all they say to me we will discus nearer the time 

Good luck to everybody and thanks for the support means a lot, hope everyone is getting through their treatment as best that can be expected

Special mention to Mike (Highlander) with what he's having to deal with not sure I could handle all his problems and keep positive, good luck 

Fred (Paul)

Together we are stronger 

johnr
Posted by

Hi Fred the 2 year maintenance is normally a subcutaneous injection of rituximab, but if you are on something different like some of the others, then it will be that. You get the injection once every 2 months though some are on 3 monthly cycles but research has shown it makes little difference (2 or 3 months option). It means treatment takes minutes rather than hours.  

hope this helps and here is a link to info for nurses about the injection

https://voice.ons.org/news-and-views/what-oncology-nurses-need-to-know-about-subcutaneous-rituxan-hycela

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Peter1954
Posted by

I will Fred, all I know so far is that the 2 monthly immunotherapy cycles last 2-3 hours. Which is a lot better than every 3 weeks for about 4-5 hours lol.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Peter1954
Posted by

Hello John, wish mine was a subcutaneous injection, sadly its not, it lasts 2-3 hours every 2 months for 2 years. But will know more when I see the doctors.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

BedrockFred
Posted by

Just back from hospital been a long day but 5th cycle done and dusted, now sit back and wait for side effects to kick in lol

Only 1 left with any luck

Great care as usual from all at PCH special mention to my nurse Eve who goes the extra mile 

Thank God for the NHS

Peter1954
Posted by

Hello Fred,

Don't know about you but I gave my nurse a hug after it was all over, I think she was a bit surprised but she knew how much she meant to me in support.

I hope you don't have any lazy moments like I did

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Jenko1979
Posted by

Nice work Fred, 5 down 1 to go. Nearly there buddy.

Paul 

Nix67
Posted by

Well done Fred. I more to go ..........

I am now slightly behind you as I don’t have my 5th cycle until the beginning of April. My treatment still seems to be more in line with Pauls. 

Paul you must be having your scan soon or did you have it last week? I also know that you are going to be celebrating a ‘big’ birthday so I hope that you have a fab party and celebrate in style. 

I am keeping my fingers crossed that your results will be what you are looking for and you can now start moving forwards towards the next stage of treatment. 

Life here in Vidnna is good. The sun is shinning and the birds are singing. Last week and this coming week are my ‘good’ weeks so I am making the most of things. School is crazy. The teacher I work with has been in and out for the last couple of months so my workload has increased while having treatment and not decreased!!! However bedtime is now 8.30pm - lol. I am looking forwards to less nausea ( which has been my biggest problem since cycle 3 ) and more energy ........ Sometimes I forget what ‘normal’ actually is these days. 

Hope that you all have a great weekend.

Nicky