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

Nix67
Posted by

Hi,

Sorry to hear about your brothers diagnosis. Fingers crossed they have caught it soon enough for him to make a full recovery.

All is good here - dentist next Monday so might not be so happy then - lol.

Back at school with a new bunch of ‘monsters’ and potential germs ...........

Though they do make me smile. One day last week one of them had covered his arms in green felt tip pen. I asked him to come and join me on the carpet.........

Me - why do you think I have asked you to come to me? 

Student - because I love tigers ..........

Yes, that bore absolutely no relevance to anything going on in the classroom or why he was now covered in felt tip pen - lol ........

Onwards and upwards to you all.

Nicky 

Clecker
Posted by

Hope your brother gets sorted  fingers crossed for him  waiting game for myself  so taken  myself and my wife to corfu  on the 20th for  a week  take  my mind off scan and  results  on 8th October  bulous  bunch  on here  helped  me so much  thanks again everyone onwards and upwards

Cecren
Posted by

Because I love tigers????  One of the better responses when you're in trouble.  Must remember that for sticky moments...

Good luck with the dentists, Nicky.

Cecren.

Nix67
Posted by

Well the dentists didn’t go terribly well as they need to remove another 2 teeth. Not terribly unexpected as they originally said 7 and this will only make 6 ..........!!! The chemo has certainly had some ‘fun’ in my jaw bone. 

I keep telling myself that it could be SO much worse and if it means getting the magic remission word then I don’t have a choice.

School continues to be busy and is keeping me out of mischief. I still get very tired very quickly but that could just be old age now and working with 5 year olds - lol ......

This weeks story.

Bell rang and all children except 1 line up.

Principal heard me questioning him so had words too.

P - Why didn’t you line up?

Child - I didn’t hear the bell.

Me - Who rang the bell.

Child - I did ..............

Have a great weekend.

Nicky 

johnr
Posted by

Hi Nicky, whilst fatigue is an ongoing issue for many, me included, its worth getting your vitamin D levels checked as low levels are associated with lymphoma and I found the supplement has improved things massively. 

John 

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

Hi Nicky!

Sorry to hear the latest dental update.   You're had to put up with a fair bit to get to the magic remission.  It's about the rest of our lives and we want it to last. I hope this now ends the dental problems you've had!

Sure, follicular lymphoma is currently expected to recur/relapse with many of us treated patients, but given that we already know the extent of treatment options, we can be optimistic.  I know it's a fast developing field of research too and new treatments may offer a future range of new choices.  I also concur with John about taking a bit of vitamin D - the evidence doesn't seem to say why it works, but certainly supports the argument that we do better on it.  My GP had me on it anyway, having misdiagnosed my bone lesion as osteoporosis several years ago.

Despite my age, I feel my energy isn't bad.  But your job is a stressful one because kids that age never let up!  But I love the stories...  do please share more!!

Cecren

BedrockFred
Posted by

Sorry to here the dentist did'nt go well 

It's amazing how you are coping with work and all thats going on with your dentists, treatment and your busy work life, no wonder you are suffering fatigue !!

I really do admire your resolve hopefully you will soon see the light at the end of the tunel 

Anyone struggling with their treatment could draw strength from the way you are handling the set backs, wish you all the luck in the world 

I feel so Iucky with the way my treatment is going / gone 

Together we are stronger
Clecker
Posted by

Hi everyone scan done results next Tuesday fingers crossed hope everyone is well and  on wards and upwards

BedrockFred
Posted by

All the luck in the world, fingers crossed for you and good results 

Together we are stronger
WayneSch
Posted by

Best of luck Clecker with your scan!

As usual, It has been a while since I've been on the message group.  Nicky, I am so sorry about your experiences with the dentist!  Six teeth out!  Yes, I hope we all hear the "r" word, remission.  I keep thinking of the guy getting chemo beside me who had 19 years between treatments.  May that be all of us.  I suspect immunotherapy will make the average length of remission longer, and yes there may be things I can do to help myself in terms of diet and lifestyle.  My oncologist said there really wasn't anything hammered down for life style chages for indolent follicular lymphoma in the same way he can say don't smoke withlung cancer or reduce processed meat with stomach cancer.  If I have made any changes it is just to make sure I get enough fruit, veggies, and water.  I went to a naturopath a few times who suggested a few changes.  I don't know how clearly his ideas are supported by the data, but they weren't harmful: eat nutritionally dense so yes fruits and veggies, but within those categories eat more things like blueberries, apples, beets, dark greens. He said I could throw out my supplements. If I want a multivitamin I should eat an apple. If I want more omega 3s i should eat fish twice a week.  So I do those things (I eat berries every day, eat fish at least twice a week) but I still haven't thrown out my mulitivitamins.  My oncologist suggested I take calcium and vitamin D twice a day after I broke my foot so I do that as well.  

Here's hoping for a good recovery for all of us!

Wayne

Jenko1979
Posted by

Good luck with those scan results. Will be thinking of you next week.

Paul 

Clecker
Posted by

Hi everyone well got all up tight ready for results my wife and both daughters taken time off work only for the doctor to tell me results are not  ready what a pile of.... on another note I'm going on a 2 year  plan  so how can they be doing this with out  knowledge of results  nhs baffled me  very disappointed myself and family  we with this has enough going on in our  heads with out  the nhs not preparing their staff errrrrrr rant over  soz hope everyone is well onwards and upwards carl 

Thehighlander
Posted by

Hi Carl, one of the most frustrating things about the NHS........ but as you say Onwards and Upwards.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi you could ring and ask can your specialist nurse to ring with the results, mine did after they had been to the MDT meeting so I did not have to wait a couple of weeks.

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

So sorry to hear you got put off Carl. As for the two year plan, I was told I'd be going on it while I was still taking chemo.  It wasn't my regular doctor in but what she said was with indolent follicular lymphoma her sense was that data doesn't really support getting more than six rounds of bendamustine/rituximab, and after that it is becoming standard practice to do two years of rituximab maintenance therapy. Maybe that was what your team is thinking. Who knows. Hang in there!

Wayne