Just been diagnosed with follicUlar lymphoma stage 1/2, anyone on a similar journey? Whats next, or what was next for you? Seems i might need a bone marrow biopsy, whats that like? Sending hugs to u all x
Hi TK Jedi
thanks for taking the time to write! Have you got Lymphoma? It looks as if i will be starting chemo fairly soon, as i have obtained a cuddly friend ‘ lumpy tumour’ its got snuggly with my liver & pancreas!! So needs zapping!! So may not need bone marrow biopsy! But cancer is devastating no matter where it is!! Hope you are doing well after your treatment, nice to speak to you good luck and keep in touch regards Donna x
Hi Donna,
It's cool to hear from you..I was fortunate to feel the lump as I was told non Hodgkin's was not easy to find due to it's slow appearance could be found at a later stage...
I'm happy that your tumor was found early and things should move smoothly for you. I would suggest that you take vit D as it helps with symptoms and drink plenty..
Take care ️
Debbie
Hi again Debbie,
yes already on vit D and other stuff lol! So have u had chemo, or just radiotherapy? Im gonna have rituximab and bendamustine,just hoping i do well with it, as there are some real horror stories out there , was just enjoying life,didnt expect this! But then who does? Still angry tho, dont like being controlled!! But got to go with and hope i got a long life after treatment! As i hope for all lymphoma people! Speak soon Donna x
Hi Donna,
It was 3 weeks of radiotherapy back in May this yr...
I can understand your situation...I had to give up my work as I could no longer physically do the hrs, so from having an active life to crawling like a snail and not having the strength I was used to, left me feeling kinda useless. I think its a matter of re inventing myself...
But I do have good news...I'm in remission, but the scar tissue left behind is still causing problems. Even so its better than the alternative and I truly hope that things will improve for you after everything.
Stay strong
Debbie
Hi. I have just finished 6 rounds of chemo for similar. I am now going onto a maintenence programme for the next two years. I too am in my 6o's an a Granny. As Mike says lots of the Lymphoma cancers are treatable. There is no cure but lots of treatment available. I was on the watch and wait system for 5 years until towards the end of last year when up pops its ugly head and it was felt I needed treatment. So that is where I am now. Hope your treatment routine is on its way. Look after yourself. This site is very informative and it did take me a while to navigate things,
Hi Friends, thought its about time i checked in with you all! I hope you are all doing great on your individual journeys! Mention to The highlander,GLANN, TKJEDI, you were all kind enough to write to me when i was diagnosed, which helped enormously! I am still here tackling the journey lol! I am going on for 2 years since heads up there was a problem, and was diagnosed stage 1/2 follicular lymphoma, still active monitoring, and getting on with my life!! Just wanted to ask, anyone reading this maybe one for mike, but they are happy with my bloods scans ect, so much so they have increased testing from 4 to 6 monthly! But i find it hard to decide weather tiredness, and bit of breathlessness, is cancer or old age catching up with me? Any body experience these symptoms, but they are not the B symptoms we are told to look out for?? Luv n hugs to u all Donna
Hi Spoons I will put up a reply on your new post that has the same text
Nice to hear you are doing well, and you are by the sounds of it. Yes, after a long time on watch and wait I was put on 6 monthly monitoring.. The team will always be there for you, I have just finished No. 6 on maintenance, yesterday and hopefully doing well, and getting on with my life. I am in my 70s now and I remember when I was on watch and wait feeling tired a lot of time, but I think a lot of people with our without cancer would say the same! If it's not a bother, don't bother, but always be mindful of it. Perhaps a chat to your general GP might put your mind at ease. If not Mike (Thehighlander) will! Hope you will keep well throughout. Hugs to you.
Hi Spoons
I was diagnosed with FL about 6 months ago. Stage 4 as it was already in several sites. Hearing stage 4 is scary but you need to remember S4 in FL is not like in other cancers. Treatment doesn't usually start until the later stages.
I've just finished cycle one with O-mab and Benzo. Some issues with low heart rate after treatment and the liver took a bit of a hit. But I'm feeling pretty good. Tiredness is an issue if I don't keep active. So I try to do regular exercise on days I'm feeling good. But I also cut myself some slack on days I just don't feel up to it or just want to walk the dog on the beach.
Slowly getting my head around the fact I have a chronic illness and that things have now changed. Don't know what the future holds for work (I'm 54 so not ready for retirement yet). But I have 3 grandkids with a 4th due imminently. Between that and the wider family I still have all the joy in life that I need to push through any medical set backs.
Cancer sucks. But it doesn't own you.
Thanks Cormac for taking the trouble to write, im so glad you are on the road to remission, and you are coping well at the moment! Like u i have accepted the chronic illness, and have dealt with the shock, i am living each day like its my last! Even drive the car like i stole it lol!! All we can do is make the most of life, i try to forget about it all in between tests! But the word cancer certainly can scare the crap out of us, but unfortunately there are many people suffering out there much worse than me, my heart goes out to them and their families!! Wishing u all the best Cormac, good luck wih the treatment, keep in touch hope to speak again soon x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © 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: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007