Affected by NHL? Join this group to share experiences and ask questions to people...
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.
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
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.
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.
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.
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!!
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
Hi everyone scan done results next Tuesday fingers crossed hope everyone is well and on wards and upwards
All the luck in the world, fingers crossed for you and good results
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!
Good luck with those scan results. Will be thinking of you next week.
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
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
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.
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!
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: