Non Hodgkins

Sorry on re reading not sure why I put BC in there ! - ignore that ...

Hi  and welcome to our corner of the Community.

I make typos all the time  but you can hit ‘more’ and then ‘edit’

There are many types and subtypes of NHL so do you know the exact type you have?

I had R-EPOCH but R-CHOP is used a lot and is very effective. If you line up 10 people and ask about their journey you will get 10 different answers so you take each day as it comes.

I will always recommend that when you embark on the treatment journey do read the information provided by your team and also on recognised Cancer Support Charities like Lymphoma Action but stay away from random Google search’s.

The treatment information can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all bad.

These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

Keep posting your questions as we are here to help ((hugs))

Hi Sally, doing my 6th on 28th May. If you want to chat I'm here. Good luck.x

Hi SallySt.  Sorry to learn about your diagnosis. It's like a whole new world in here.  I have PTCL (don't know if it's the same) but am also having the "CHOP" treatment.  I had my second round (of six) chemo sessions yesterday.  I was very nervous when I walked into the chemo department, not knowing what to expect.  If such a thing can be a "good experience" I was pleasantly surprised.  It isn't bad, I was shocked how many other patients there were receiving treatment in the chemo ward too.  A real eye-opener as to how many cancer patients there are. I think the hardest part about this experience is not know what to expect.  I was told my hair was going to fall out, but couldn't believe this process started after only two weeks after my first treatment.  For a week I walked around picking up hair from everywhere.  I had only been to the hairdressers the day before it started to fall-out, by day five I took an electric razor and shaved the lot off... feel so much better without it.  Luckily I'd been given an appointment (via the hospital) of a wig supplier (a department of John Lewis's) that came to the hospital so that I could try some, luckily I was so impressed with them that I bought two on the spot, already they've been a god-send.  Out of all the side effects, the hair issue terrified me, it had been 70 years in the making after all.  It does feel as though you've forgotten to put your knickers on of a morning, and am not ready to face the world without some sort of head covering yet.  I think I look like the Yodah (not sure of spelling) character from star wars, just need pointy ears now and I'd be set for a new career.  Sorry seem to have gone on a bit, it's just the above issue did come as the biggest surprise.  I'm so shallow I know.  There are other side effects, but have dealt with those without too much hassle.  I think I'm probably older than some PTCL patients, so not everyone will have the same side effects.  If you want to know anything else about treatment, let me know.  Chin-up, and stay positive.

Hi Plunkie (great name).  So glad you have written on here, I was beginning to think I was the only recent diagnosis, and receiver of CHOP.  It must be a relief to be well along the line of treatment.  What will the next step be for you, are there options?  

Hi Cattins.  My Dad's nickname for me. Yes, a big relief for 95%. Worth all the grief. The only thing I suffer with now, after my fifth, is more tired and my legs are still quite weak to walk too far.  Have a Walker and invested in a small shopper scooter, to get me out and about further. Still walk as much as poss to build up strength. Took the scooter in the car today then realised we didn't bring the key!!!! Had to hire one. After my third they told me mine was more aggressive than thought. I was offered a more aggressive treatment but decided to wait the results of my CT scan, after no 4. Glad I did as results were 95%. After my last one on the 28th May I will get a Pet Scan( 4-6 weeks) and it is all down to the results of that.  Sorry but I'm not sure what PTLC is?

Hi again, yes I was confused with the abbreviation too.  I was looking on this site for the cancer I have, and had been looking for name in the wrong order. Mine is Peripheral T-cell Lymphoma (nos) non-specific.  All double-dutch to me, I still can't believe I have anything that serious wrong with me.  Nice to chat.

Hi Cattins you may find the link below to some information on the Lymphoma Action site about PTCL (nos)

lymphoma-action.org.uk/.../peripheral-t-cell-lymphoma-not-otherwise

A shock to me as well.  Just try and stay positive and fight your best fight.  Chat any time.

Hi Highlander,  thanks for the above thread, it was useful reading.  But would like to see figures for success rates etc for CHOP treatments.  Perhaps it's too new...