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

Clecker
Posted by

Amazing well done  fabulous

WayneSch
Posted by

Fantastic job Paul!

This is an inspiration for all of us still going through our chemo.  Between your race and several people coming out the other end of chemo with no sign of the lymphoma this thread has been full of good news of late.  It gives us hope.  There was a time when many of us were going through the chemo when it seemed a bit dark, people getting infections, spending a few days in hospital, Nicky getting her extractions after chemo. Even for indolent follicular lymphoma, which I'm told the treatment is "well tolerated" it has its challenges. So hearing the good news at the end of the journey means that much more.

Wayne 

Tina478
Posted by

Congrats Paul, thats a very decent time.

Best wishes

Tina

x

Courage does not always roar..........

Tina478
Posted by

Wayne, so sorry to hear of your broken bones.  I broke my ankle 6 months after finishing R-Chop, then my wrist 4 months after that.  Bone density scan showed some reduction so I am also on calcium supplements and Alendronic Acid for 5 years. Hopefully that will rebuild the density.  So it seems chemo can affect bone density, but hopefully not for life.

My tumour shrunk from 17 cm x 9 cm and post treatment scan showed a tennis ball size residual mass, but no activity.  Haematologist said that I had a complete response and the remaining mass was actually scar tissue.  The bulky masses do tend to leave some residual scar tissue bacause there is just so much matter to begin with, so try not to be too disappointed if your 1 cm remains as long as there is no activity.

Best wishes

Tina

x

Courage does not always roar..........

Cecren
Posted by

It's all about ups and downs, Wayne.  And the odd bump in the road! 

Lymphomas don't always make you feel ill when you're first diagnosed, so the disease feels a little unreal.  The newer targeted chemo treatments do have far fewer noticable side effects, but their infection risk is higher for many of us.  We're not aware of this on a day to day basis, so what we notice is relatively few problems.  I compared my experience to my fellow oncology patients and felt lucky.   Nicky had a very hard time with her infections, but mine was OK and much easier to fix.  Neither of us had sepsis, thank goodness.

So, at the end of the course I need to be careful for a few more weeks, but I feel like I'm recovering my energy, only 6 weeks post the last chemo.  OK, I'm an old biddie, so not I'm commuting and working at a demanding job.  I don't have young children or dependent family  to care for, so it's easy to get things done.  I need to manage residual pain in my scarred hip bone and build some stamina.  None of us know how long remission will last, but it's so good to get there!

Soon you'll be able to look back and see how far you've come.  We'll all be waiting for your news too!

Cecren.

WayneSch
Posted by

Thanks Tina and Cecren!  I too feel lucky. I listen to other people's stories when I'm getting my chemo at the cancer centre and think Bendamustine/Rituximab has not been that bad! In fact, that has been my common response when people say "I'm so sorry you are getting chemo" is to respond, it hasn't been that bad. Mostly just fatigue and reduction in stamina.  I realize now that isn't entirely true, but well worth it to get rid of the lymphoma.  Tina, I'm so sorry to hear about your ankle and wrist! I hope you have healed up well. 

Wayne

Nix67
Posted by

Hi Paul.

Thats a fantastic achievement and also nice to see a photo and put a face to your name - lol.

You should be very proud of yourself. I know that it was a goal you set yourself many months ago and I am SO pleased it was successful.

All okay my end. I had my first round of maintenance treatment at the beginning of August and blood results yesterday. All was good so I have snuck back into the U.K. for a few days before starting back at school next Friday - 16th. Hasn’t been a great summer - dentist is still looking at pulling another 3 teeth - but when I look around and see others at the hospital I know that things could be so much worse. I still consider myself to be one of the lucky ones.

Though I did have to smile yesterday when leaving the hospital. My consultant said “ I don’t want to see you again  until the beginning of October - so go and live life to the full and forget you still have cancer ............” 

I think she meant well

Nicky 

Tina478
Posted by

Thanks Wayne,

Yes all healed just about, had to have surgery for both, but finally 2 years post diagnosis/chemo/radio/breaks/surgery I am back running, hiking, cycling and kayaking.

So, I also feel pretty lucky to have survived and have a chance a living a life, unlike many others sadly.

Best of luck with the remainder of your treatment.

Tina

x

Courage does not always roar..........

Clecker
Posted by

Hi everybody just finished my 6th round  got date 30th September for scan feel really well  and hope to be back in work by November  so fingers crossed hope everyone is doing ok once  again  thanks everyone for  sharing things on here you guys been amazing cheers everyone onwards and upwards thanks everyone carl aka clecker 

Nix67
Posted by

Sounds good

Nicky 

BedrockFred
Posted by

Good luck everybody hope everything is going well, me well I'm good right now got a lot of the weight off and getting plenty of exercise back doing my 5 mile countryside doggie walks and loving it

Week on Saturday the big family holiday with all our children and grandkids in a big country cottage,in North Wales, can't wait, but must say when going through chemo wondered if I would make it. So for all of you that are not as far on I know it's hard but getting through it like me you will makes it all worthwhile

Big thanks to everyone on here that have helped and encouraged me along the journey you made it all possible, there's so many courageous people here its truly inspirational 

Back at hospital the week after the holiday for round 2 of maintenance treatment 

Thanks again everyone and those of you still having chemo/treatment remember stay strong stay positive and drink plenty it really worked for me

Together we are stronger
Cecren
Posted by

Congratulations Carl!  Hope that scan is clear and you're safely into remission.

Cecren

BedrockFred
Posted by

Back from a great holiday with the clan in North Wales stayed in a converted chapel in a small village called Llandrillo on the edge of Snowdonia 

Straight back to hospital for my 2nd maintenance treatment, all went well no side effects and all done in less than an hour, speaking to my consultant he is very pleased with the way its going, only problem my toes and losing my toenails he thinks I may have an infection (no doubt the Lake Bala water ;-)  ) told me he would give me a course of antibiotics if it continued

I feel so very lucky with the way my treatments going and still maintain getting plenty of exercise and drinking plenty has really helped me along the journey

Just had a bit of bad news my brother has just been diagnosed with prostate cancer hopefully caught early enough for a good recovery 

Hope everyone is getting along well on their journeys and thanks for the great support on here

Together we are stronger
Thehighlander
Posted by

Good to hear about your time away and let’s look for your infection to clear up quickly.

Sorry to hear about your brother. As you have said, you found the Community a great support. We do have a great bunch of folks over in the Prostate cancer forum where he would get the same type of support and information that will help his cancer rollercoaster.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Hiya!  Sorry to hear about your brother's diagnosis and hope the prostate group is as supportive and cheering as this is.  It made a lot of difference for me too.

Fitness and looking after yourself during treatment does help when you have to rebound and get on with life.  It's always rather good to get some immunity to infection back too!  Does the maintenance treatment affect this significantly?

I hope you can't blame the lake water in Snowdonia for doing nasty things to your poor toes - we grew up drinking that stuff as kids!

Cecren