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.

Living with chemo, some advice please.

DaveT88
Posted by

Hi Cecren,

It is certainly a steep learning curve when you enter the world of FL. There is a whole new language to learn in the shape of Latin medical terminology.

I am 52 and they wanted me to have chemo due to the mass being quite big (9cm) and my relatively young age. 

The only symptoms that I experienced were night sweats which I had put down to meds that I already take.

My only symptom was blood in my urine which led to an investigation by a Urology Team. It was a CT scan of my bladder that captured an image of the mass. My wife and I were in total shock when we were told.

Fortunately, my bladder was given the all clear.

Good luck with your treatment. 

Macmillan nurses and a charity called Lymphoma Action are great sources of information.

Best wishes,

Dave.

Cecren
Posted by

Hello Dave,

Sorry to hear about the nasty surprise.  52 is young and a big life disruption for work and family life when you're just so busy with both.  I'm much older, but still hope to get through chemo with success.  I can relate to the language thing too.  I've had a career in nursing and research, but this is still a major brain stretch.  And as for the drugs, I can't even pronounce them.  It's hard to make sense of it.  The Lymphoma Action and Macmillan websites do a good job translating stuff into clearer language, and there's NICE document which gave a helpful outline of all the current treatments.  You've probably seen it already - https://www.nice.org.uk/guidance/ng52/ifp/chapter/treating-follicular-lymphoma

Isn't it amazing how we manage to grow such whopping big lesions without ever being really aware of them?  I have one too: boney in my case and extending quite deep into adjoining muscles.  I just thought it was age related creakiness and redoubled the exercise programme, but the orthopaedic surgeon nearly fell off his chair when he saw the scans.  I was mostly scared it might be a sarcoma or myeloma, so a lymphoma diagnosis almost came as a relief.  Once I get into the 6-8 course chemo programme they have lined up for me, I think I'll feel differently...

Peter1954
Posted by

Hello Cecren,

Like Jenko (Paul) I have just finished my chemotherapy (2 weeks ago), but I was put on different drugs Obinutuzumab (immunotherapy) and CVP. I think regardless of the drugs you are on fatigue is one of the side effects as you go through the cycles. My FL was in various parts of my body, thankfully not around my bladder area. I have one more week of tablets to take Aciclovir 400mg twice a day and co-trimoxazole 480mg twice a day on Monday, Wednesday and Friday, yet these 2 drugs don't seem to affect me on the fatigue front.

I'm now getting into a walking pattern that I lost between cycles 4-6 and now do around 3.5 miles a day, so not to far to get back to my 5 miles, which I hope will be in the next 2 weeks.

Food is a problem as I have put on so much weight and its not really coming off yet. Prior to my starting chemo I was 93kg, then last time they weighed me I was 101kg and thats over a 4 and a bit month period.

I wish you well on your journey and am sure that  you will feel better after its all done.

Peter

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

Cecren
Posted by

Hi Peter!

Thanks for the helpful perspective on the treatment from the other end of the tunnel.  It's such a steep learning curve! Sounds like a similar chemo mix to that they propose for me.  It must be tough to boost your walking distances when you're feeling so debilitated, but it should help to raise mood and shift a few excess pounds.  I hadn't heard about the use of Aciclovir or co-trimoxazole as part of the package, but I'd tentatively guess that they're the kind of thing you'd take to prevent/treat viral and bacterial infections.   Interesting...

Walking is a bit of a problem at the moment because I've got bone lesions and a limp.  I am hoping this will improve during chemotherapy and I plan to get up a nice local hill tomorrow in case I can't manage it for a few months.  As for what we can or can't do during treatment, I've just been told that I shouldn't do any gardening or handle raw sheep fleeces when I'm at risk of infection.  I do a lot of both, so this sounds a bit discouraging.  The fleece guidance I have been given outlines a risk for infection that surprised me.  http://hgwsd.co.uk/wp-content/uploads/2016/03/FleecePrecautions.doc

Personally, I haven't even had a tetanus vaccination recently.   Not sure this'd be a good time for it.  More stuff to learn about!

Peter1954
Posted by

Hello Cecren,

Never knew that about sheep and my grandfather was a farmer.

Do you use a walking stick? I am at the moment as I'm a bit wobbly after a mile (I've even had a lady say, "You're drunk, disgusting" LOL

I've only just started today to do a  bit of gardening, planting up bulbs in my pots, but will avoid the digging bit another couple of months. I've had to give up my allotment as its looking so bad with weeds, but the lady at the council said she would move me to the top of the list in 3 months (naughty isn't she?)

The drugs they gave me are being tested, as I had a rather bad reaction on my previous cancer and apparently you can only go on a trial every 5 years, ( you can take a look in my profile) but they got me on a NICE drug thing (don't understand how that works).

I can't remember the last tetanus jab I had it was so long ago hahaha.

Just take it easy and do what you can is how I was told, but I must admit I'd have rather pushed myself a bit harder.

Peter

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

Cecren
Posted by

Hi Peter,

Drunk & disorderly in the gutter isn't a great look, is it?  Me, I've been on and off crutches for so long, I just swing along.  You do get great upper body strength after a few weeks.   Otherwise, walking poles are great.  You need those rubber ferrules on the metal ends, or you sound like Blind Pugh in Treasure Island and you damage floors in shops.  Always looks less disabled and more outdoorsy, I think.  Also, two poles means much less wobble.  If you feel safe on your legs, you can maybe do more walking?  Today I plan to hit the painkillers and try to make it up a local hill with nice views.  Hope I can manage!

You must really miss your allotment.  My veggie garden is my favourite place and your Council lady is a Star!  I grow as much as I can because it's hard to buy fresh veg outside the cities in Scotland.  I've never seen a greengrocers here, though rumours suggest there is at least one in Edinburgh.  For all I know, there may even be street markets.  There's a lot of fruit grown here, but they truck it down to Southampton to be washed and packed in plastic before they bring it back to the local Tesco.  If they did that to me, I'd look a bit tired and weary too.   

I'm content to wear gloves for everything in the garden & a surgical mask/eye protection when dealing with bulk compost, spraying, pot washing etc.  I don't use animal manures apart from pelleted chickenshit - you get weeds everywhere unless you compost manures for about 3 years.  I am hoping that'll be enough protection. 

Will try to get some advice on Tetanus jabs.  It's not a 'live' vaccine, so should be OK, but I guess one mightn't have enough immunity left to respond to it.  Clinical trials sound interesting.  Will read some more on that.

Peter1954
Posted by

Hello Cecren,

I do use poles when I do serious walking with a backpack, otherwise here locally its just a walking stick. £ years ago we were in Edinburgh for Easter, but I didn't see a fruit and veg shop and we walked all over the place. A friend of mine works at DEFRA  near Southampton and he won't touch anything from it, says its irradiated.

I got all my bulbs planted now and looking forward to next years show, especially the saffron bulbs which I have 150 of. I've got half a ton of 5 year old horse manure coming Saturday after next and my eldest son is coming to help as well as 4 bales of potting compost for my acers and crooked witch hazel tree.

I've also done just over 3 .5 miles walking, we went to our pub for a small drink (half a pint for me), first time since September and they all were asking where we'd been, no I didn't say what was wrong with me, they all take it so badly.

Peter

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

Cecren
Posted by

Hi Peter,

Yes, I feel a need to keep the lymphoma to myself.  It does seem to drop a bomb into conversations, except for friends who've been through the same sort of thing.

3+ miles is a long way! But I have walked along the first part of the ridge above our valley and visited two small lochans.  It was worth it - panoramic views in sunshine from heather moorland and grouse flapping away making that weird rattle they do.  Tomorrow I have a hospital appointment and then back to shift some strawberries and plant new varieties.  Never a dull moment with a garden!

Peter1954
Posted by

Hi Cecren,

Its sad when you feel you have to, my kids get a bit fed up with me at times as I like to talk about it, but they have the attitude of so many people today "It'll never happen to me".

Yes 3 mile s is a good walk at the moment, but I've always loved walking, it so much better than jumping in the car and sitting in a traffic jam at some point. I wish i could say we have nice countryside here, but its turned into a concrete jungle, so if we want a nice quiet walk somewhere its a 10 mile drive, which at the moment seems a waste of time bearing in mind 3 miles takes me over an hour. As for our garden its postage stamp size, so not much work at all.

Peter

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