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.

R-Bendamustine Treatment

johnr
Posted by

if anyone wants to read about chemo brain the is an article in the latest lymphoma action magazine which you can download as a pdf, its a free publication they produce 3 times a year.

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Peter1954
Posted by

Thank you John, Now I am starting to realise why I am taking so long to do certain things or not finish them. Mine all started  nearly 5 and a half years ago when I had bowel cancer and the chemo I had then that caused my cardiac arrests. Just prior to being released from hospital I had a psychologist undertake various tests and from that they worked out that I had a bad short term memory, which I still have, yet lets say I do something today, tomorrow I will have forgotten it, but then a couple of weeks later I can remember it. I'm terrible at remembering names, always misplacing things, forget why I've gone upstairs to get something, so its why now I write it all down.

Peter

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

johnr
Posted by

Hi Peter all I can say is snap, especially re remembering names and word searching is a challenge to when talking, anything important I need to remember to do I put in my phone and use that more now as I would just keep forgetting things. 

the are a number of research papers around if you want to read more and it was only around 2012 when it was recognised as chemo induced cognitive impairment 

John 

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

I had a CT scan after my 3rd treatment cycle and went to see the Haematology consultant this morning who has confirmed that I am in complete remission.

I am so happy and a bit emotional at the moment.

I still have to complete the 6 cycles of R-Bendamustine, 4th cycle is Monday/Tuesday next week and then I might be put on Rituximab maintenance for 2 years. 

Wishing everyone else best wishes for a successful outcome.

Allan
Thehighlander
Posted by

Great news Allan

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Peter1954
Posted by

Hello Allan, 

Thats fantastic news. So glad its going so well for you.

Peter

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

johnr
Posted by

that's great news Allan and will continue to give hope to the others in the group

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

Fantastic news!  And so soon too.  You must be thrilled!

Congratulations on your remission, Blocks!

C

Jenko1979
Posted by

Congratulations Allan, that really is amazing news, to be in remission after 3 cycles is incredible and shows just how good this treatment can be.

here’s to a long and trouble free remission mate.

Paul 

Nix67
Posted by

Allan,

That is fab news

Hope that the next cycle goes well for you.

Nicky 

blocks
Posted by

Thanks for all for your kind messages, apologies it has taken me some time to respond.

I completed cycle 4 this week and today I am starting to feel close to normal again.

Allan
Thehighlander
Posted by

Hi Allan , good that you are making progress and you are not experiencing any real issues. In the early days a lot of folks just expect the journey to be full of challenges but it often turns out not to be the case and let this continue all the way through your treatment.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Just sharing a bit of encouragement.    I got my halfway scan results today - 4th treatment with B-R due Tuesday.  I was a Grade 4, with lymphomas in my neck and ilial bone in my hip, with local spread into everything around the bone.  Bones are harder to treat than soft tissue lumps and take longer to heal and mine was a complete mess on my initial scans.  My orthopaedic surgeon was shocked by the scan and I was worried in case the whole thing just crumbled apart.   

The nodes in my neck are normal, the tissues around my hip bone are clear.  This is great, although my actual hip bone is still a mess.   The treatment is working, the lymphoma is responding and I can continue the same course.   I know it'll take time, but I feel this is decent progress after just 3 treatments.   Side effects are some bruising around the veins they use for the infusions and a bit of tiredness.  Trivial!

Keep going, chaps!

C

Thehighlander
Posted by

Worth a high 5

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Peter1954
Posted by

So glad its going well Cecren, hope at the next one you see an improvement in your hip.

Keep

Peter

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