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.

CT scan?

Peter1954
Posted by

Hello Wayne,

I live in Surrey UK about 12 miles SE of Heathrow airport. My Mum was Canadian born in Red Deer, Alberta, sadly she is no longer alive ( rather grateful in a way for that) as less than 2 years after she died I was in hospital with cancer as well, you can read it in my profile.

Next week I have 2 appointments on Tuesday for bloods and see the doctors, then Wednesday I have my 1st immunotherapy course which is every 2 months for 2 years, which i am looking forward to as its not chemo hahahaha.

Hopefully it will mean a few years of no treatment, but if it ever happens I belive in justr  getting on with it and next time I'll know how to cope better.

Keep going anyway its part of life

Peter

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

WayneSch
Posted by

Hi Peter, 

Best of luck with your appointments!  I been told that immunotherapy tends to be really well tolerated, but your "hahaha" suggests you think "Is this really all that different from what I was just going through?" 

This is a trivial question, but you are from Surrey UK, I've never really understood how important, or unimportant UK is, whether people tend to be proud Englishmen (is that a sexist term now?) and there is this vague collection we belong to called the UK, or whether the UK is really important to them. 

I think I'm on the mend here.  I went to my dentist and I think it was the dental assistant who suggested putting me on amoxicillin thinking I had a bit of an infection, by the second pill (maybe 8 hours after seeing them) I had less body aches, at the same time i have some swelling I'm going to carefully watch this.  Wow, this "little" thing (a damaged tooth) that was no big concern before treatment obviously took my body all it had to fight with what I assume is a lower white blood cell count.  I understand the "be careful about infections" comments the doctors mention now.  It makes me less cavalier about my health, instead of a "Oh ya, I'll be fine" I have a bit more of a let's watch this carefully attitude all of a sudden. 

Peter1954
Posted by

Hello Wayne,

Yes immunotherapy is different, for a start its not smart bleach, I've never asked any questions about it but to me it means it helps my immune system get stronger, I think its more than that but thats enough for me lol.

UK well to be honest it is important to me as its my home country (the England bit), I could live almost anywhere to be honest but having had cancer twice can I afford to move abroad and if I could would I, thats a tough one as I have an almost 5 year old grandson and I'd miss him.

Hygiene, is so important, avoid people with any sort of cough and sneeze, don't use the same towel as anyone else when you get washed, I also use hard soap, not this liquid stuff, nobody is allowed to use that either.. Toothbrushes keep well away from others and wash your clothes separate, thats what I did all the time I had the chemo going on, maybe its a bit OTT, but better safe than sorry.

I am waiting to go to the dentist still, but hopefully they'll say next week as I have a loose tooth (not painful as its been root filled in the past) and I'd like to keep it if possible.

As you can see I'm a bit of a hard head at these things, but it will all end soon.

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

I'm on the immunotherapy route and happy with it.  Side effects are largely anticipated by a really protective haematology team - I get low dose antibiotic 3 days a week, daily antifungals and intially some allopurinol to help clear the products of cell breakdown - they make you drink gallons every day to keep this process going.  This kind of regime may not be necessary, but I do feel safe and trust my team.   There's some tiredness and my face is blotchy this week.  I ache in my bones and muscles where the lymphoma has bulked up, but I reckon this is good therapeutic activity happening, so I limp on and look forward to my halfway checkup scan.

I feel good and generally full of energy, but there's the odd idle day when I just do relaxing stuff.  Everyone needs downtime!  Infection is a slightly increased risk with this type of therapy versus cytotoxics.  But apart from crowds and public transport, it's not difficult to keep risks low.  I wear a mask and gloves to handle compost and add goggles when I use plant watering kit.  I think I frightened a delivery van driver when I emerged togged up from the garden to collect a parcel, but the neighbours are accustomed to strange sights...

There is a low immunity diet published, but I reckon it's more for people who are seriously immunocompromised or going for a stem cell transplant.  Clean food handling is OK so far.   I am avoiding those lovely smelly unpateurised blue cheeses.  It's tempting though, because the bulk produced 'safe' Scottish cheeses taste like earwax.  There are finer Scottish cheeses, but they tend to be expensive artisan goodies and unpasteurised.

If you read those side effects leaflets they publish, you'd think you were in for the Plagues of Egypt, but it's been pretty smooth so far.  Nicky is further on than me, so is worth reading.

So glad they're sorting your tooth infection out.  Antibiotics make our fancy treatments possible.  They're a world treasure.

C

BedrockFred
Posted by

Personal hygiene drinking plenty is sound advice

I am about to have my sixth cycle (RCHOP) and fingers crossed my last cycle of chemo in fact it's tomorrow

On my pre chemo appointment yesterday my oncologist was so confident he has booked me in for my first maintenance cycle, so here's hoping he's right

Don't go as far as you with gloves and goggles when pottering around in my greenhouse but always make sure I thoroughly wash in fact most time shower when doing gardening and jobs outside

What I do maintain is drinking (not alcohol) at least 3ltrs a day and I keep a strict record and record all my drinking with an app on my phone, I am convinced drinking plenty aids the treatment. I have seen some patients in the chemo suit looking really poorly and when I talk to the most common thing they say is I can't drink that much sad really because I am certain it aids the treatment

Good luck

Together we are stronger 

Together we are stronger
WayneSch
Posted by

Hi Peter, 

You got it, I'll watch hygiene more, something else I was cavalier about  

I actually had my white blood cell count checked and all is good.  Last night I had night sweats, and my wife said (having slept with me for 30 years) you never have those.  I checked my temperature, it was fine when I checked it, but she thought a trip to the hospital was warranted.  They took a blood and urine sample and my neutrophils (mature white blood cell count, I might have spelled that wrong ) was 8, the high end or normal, so I was fine to just carry on with my amoxicillin. It is all going to be ok. My energy is better again today, so I suspect all is good.  The energy thing is the most variable at the time, and it may be related to the infection or it might be geting off the steroid, or it might be the chemo itself. Who knows?  Saturday I had gone for a long jog with my daughter (9 miles) and felt fine.  Monday, I barely got my butt off the couch. Today, I'm puttering around again. 

Best of luck with your tooth too!

Wayne     

WayneSch
Posted by

Wow, BedrockFred, you are so close to being through this!  Best of luck!  I'm struck that both you and Cecren have been told to drink more, something that has been a tough habit for me to get into.  I thought I was doing well to be up to a litre a day, but you do 3 litres a day!!! Way to go. My oncologist too has said drink more and I'll get those litres up!  

Wayne

Peter1954
Posted by

Hello Wayne,

I think the sweats are quite normal from time to time with this disease. The sad thing is if you get any bug it can be terrible with the energy levels, when i had a chest infection over the new year it really stopped me doing what I wanted. My last few days g=have been better but I can't wait until I can get back to my 5 miles a day.

Tomorrow we are out most of the day doing birthday shopping and as its female orientated I know I'll be doing plenty of walking.

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

Last cycle done today now the agonising wait for the scan in a month to confirm what we all think

Get that drinking up mate you know it makes sense, and exercise but don't over do it rest is as important 

Together we are stronger 

Together we are stronger
Nix67
Posted by

Hi Wayne,

Like you, I am not based in the U.K. but have jumped onto the U.K. site and have found it really helpful yet very different in many ways to treatment here in Vienna Austria.

I am heading into cycle 6 at  the beginning of April and the treatment here is good,  yet barbaric in many ways. I have been told to ‘just get on with things’ so have been working full time with a class of 5/6 year olds, travelling on public transport ( including planes ) and to be honest not changing any part of my lifestyle. 

I suffer from nausea/ sickness and tiredness but to be honest the doctors don’t seem to care! I don’t have a ‘team’ as such but do see the  same haematologist everytime I go to hospital and that’s about it. They don’t believe in putting anymore drugs into my system than they need to so I get straight immunotherapy and chemotherapy without anything else. I am not given any drugs before treatment or to take home with me. 

However like you I have tooth problems. My dentist wants to pull at least 2 of my wisdom teeth out due to infection but says he won’t touch them until well after chemo has ended. He is American - the Austrians say - just pull them regardless...........

I think it’s different for all of us, we just have to trust in the people who are delivering our treatment - which seems to be different according to each individual and enjoy hearing each others stories. Just do what feels right for you. 

Nicky  

Peter1954
Posted by

Hello Fred,

Yes its a tough month, but draw strength from the fact that the chemo is done and you should start to feel better as that month passes, I am feeling so much better now than I did in February.

Peter

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

WayneSch
Posted by

Hi Peter, 

I hope you survived the shopping!

I'd love to be doing 5 miles a day (I've been sort of a three runs a week person for years).  Yesterday my daughter and I went for a slow 5 miles, and because she was worried she was coming down with a bug, we  quit, but I was actually glad. I don't know how much I should push my self.  It is 12 days since chemo started, I might still be in that 2 week period where people seem to be saying I'll be a bit more sluggish.  I'm not doing much today but I'll get some activity in Monday and hopefully my stamina will be a smidgen better.  Otherwise doing well. I've now been told they have to pull that tooth that was bothering me, which I'm fine with, but they want to talk to my oncologist to figure out which day (son't want it too close to chemo days).   

Wayne

WayneSch
Posted by

Best of luck Fred!  

Ya, the waiting is a killer.  Waiting to see if I needed treatment was hard. Waiting to see how successful it has been will be hard. Let us know what your results are!

Finished my liter of water, ok one more glass, just one more glass LOL. 

Wayne

WayneSch
Posted by

Hi Nicky, 

Wow, your experience is different from mine!  I suspect I'm getting a bit closer to the UK experience.  I'm not sure what to think of that. 

During chemo days I was on four anti-side effect medications.  Now, and until I go back for cycle #2 I'm still on two (ranitidine for nausea and valacyclovir as an antiviral). I suspect that has worked for me as I don't have any nausea despite both the chemo and then needing anitbiotics for my tooth.  I haven't picked up a virus despite my daughter having just confirmed for me that she has a head cold. So I'm glad about the anti-side effect things. The life style stuff.... I'm not quite as certain.  I'm on a leave from work, I think my oncologist would consider letting me go back if I really fought for it. I think, I'm not sure.  I work in a hospital which might give him pause.  I'm sad that we put our trip to Ireland on hold (my first ever to Europe, and I suspect the place we wanted to stay in Dublin may already be booked up). Is the Canadian model a bit too cautious?  I don't know.  I love your line, "trust in the people who are delivering our treatment."  I really do trust my oncologist so at the very least I may argue for my desires, but ultimately trust his decisions.  

Cycle 6, is that the last cycle?  I'm getting 6, once a month treatments that seems pretty standard for us folks with indolent follicular lymphoma. 

Wayne

Peter1954
Posted by

Hello Wayne,

Yes survived fairly well, 4.5 miles over 2 hours, but the pins and needles ended it all, was really staggering towards the end as I can't feel the ground.

Don't worry about making yourself do things, if you feel like a walk split it up into a few short walks thats what 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