Treatment date

Hi Clecker and welcome to the site though sorry you had had to join, if you can let us know what chemo regime you are having and where your FNHL is in your body then others will relate to that and share their experiences and advice, I had 8 rounds of RCHOP for an aggressive type of lymphoma DLBC. Your type if its FNHL is treatable and don't worry about being stage 4 that's used to inform the treatment plan and blood cancers are not like solid tumour cancers. I was stage 4b and my type did not get a grade where as FNHL does, did they mention that. Most treatments are do-able and the fear of chemo is much worse than the experience as we have all heard the horror stories but its not that bad.

Do share more when you are ready to and you will find a great bunch of people here at present, some are going through treatment and some have recently finished, you can read their posts for reassurance that this is not as bad as you may think.

any questions just ask

John 

Good luck with treatment

I started treatment on 27th Dec not a great Christmas for the family  NHL stage 3

Just had the hopefully final 6th cycle of chemo last Friday and the side effects are just starting to hit me, metal mouth, fatigue, stomach pains etc but consider my self lucky as many have far worse side effects

Hopefully you'll be ok and sail through fingers crossed

What treatment are you having 

Thanks John  I have  it in parts of head behind eyes in neck under arm lung stomach and  groin plus  enlarged spleen what  a mess  but  do  you  know  I feel ok in myself I'm a bit apprehensive abouthe situation but I'm a positive type of guy  so here goes

Obinutuzumab (gazyvaro) what a  mouth full  lol

Hi again, the are 2 or 3 who have had that or are still on it and they are having it with other chemo drugs like Bendamustine, if your just having Obinutuzumab then thats not a bad start is not chemo but is a monoclonal antibody and is tolerated better than Rituximab as you don't run the risk of the allergic reaction. 

Just make sure you drink plenty to flush the drugs out and try to exercise as it helps if fatigue becomes an issue.

hope this helps

John 

Hi Clecker,

i finished 6 cycles of bendamustine and Obinutuzumab in February and have just been given the news I am in remission, so hopefully that makes you feel good about your probable outcome from treatment.

are you having bendamustine (chemo) alongside Obinutuzumab?

if not, then I’d expect minimal side effects as the main drug that caused the side effects was the bendamustine (chemo)

if you are on chemo as well, then prepare for maybe one bad week out of every 4 and another week of tiredness out of every 4 and then 2 pretty good weeks. Obviously everyone is different but I’m sure both Fred and Nicky on here can confirm that this was a similar pattern for them.

i wish you the very best of luck with your treatment!

i start my first of 12 8-weekly maintenance infusions of Obinutuzumab on Tuesday, but so far life has completely gone back to normal for me and I’m fitter and healthier than ever atm.

cheers

Hi Clecker and another welcome to the Community but so sorry you have had to find us.

I have lived with my rare type of T-Cell NHL 4a2 20 years back and like lots on these forums have been through our various treatment paths and happy ends are normal, yes hard work but all do-able.

We are around to help walk this journey.

It would be good when you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you.

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page.

Just hit our forum names to see some of the stories.

All the best.

Thanks Paul  I'm on chemo as well fingers crossed I be fine

Not as bad as your hear at least not for me maybe I'm lucky but just finished treatment and everyone seemed to cause some different side effects Fatigue being the worst and most often but gentle exercise and build up slowly after a couple of weeks I get back to my usual 3 plus mile doggie walks

Chemo not nice but needs must and the lovely caring nurses really help at my hospital 

Can't stress enough drink drink drink I am certain that is a big factor in the regime 

Now waiting for scan and results going to be a long month although to hurry it along we are having a mid week holiday to beautiful North Norfolk coast going next Wednesday to Sunday hopefully a scan soon after we are back 

Hello Clecker!

You obviously rated a grade 4 on grounds of variety alone.  I was a similar grade 4, mostly with my bone marrow and muscles.  The scans that we've seen on this Group recently are amazing!  It shows that systemic monclonal antibody  treatments get into parts even Heineken can't reach.  And it looks like it works quicker than I had expected.  I'm waiting for my midway scan and hope to see serious changes after 3 treatments, even though bones take a while to recover.

I can't pronounce the dratted names either, but there's some kind of international convention on naming them to avoid confusion.   The -mab suffix stands for Monoclonal AntiBodies.   I read the stuff and find that mine's a chimeric thing (rituximab - an older drug than yours), with a dab of mouse DNA in the mix.  Fortunately the cat doesn't seem to have noticed any changes, but I do wonder about these cravings for cheese....

C