Found out NHL is back & feeling afraid

Hi All,

I suffered from NHL high grade diffused B cell in 2010 at the age of 29 and have been in remission since. I was even discharged from my consultant in January this year which made me feel completely back to normality. About three weeks ago I found a large swelling under my left armpit and to be horror have been told today the biopsy has shown this is a return of NHL. My CT scan has shown no other areas which I guess is good news.

My previous treatment was four cycles of R-CHOP, intrathecal the following day and then 30 rounds of radiotherapy.

I honestly never expected this to return and now feel very anxious about having to go through a more intensive regime this time. I’m not meeting with my consultant until two weeks due to holidays, but my case is being discussed next week at the MDT meeting.

In a relapse, am I still able to be cured?

Any advice is gratefully appreciated.

Ross

Hi Ross, I remember your first treatment and your posts, sorry to hear you have relapsed, though sometimes they also class it as a new diagnosis depending on how and what is being presented.
The short answer is yes it is still treatable and the big discussion will be whether to go down the stem cell transplant route, if that happens the is a good active group on the macmillan site where you will get lots of advice and support if you think that will help.

The are a few different treatment option so once you know the plan let us know.

take care
John

Hi John,

Thanks for your reply and I hope you’re well. I remember you too!

I’m not seeing my consultant until 27th July so the next few weeks will be an anxious wait. I’m just worried the tumour may spread in this time. I will update you once I meet my consultant.

I’m going to call haematology department today to ask if I can go on holiday next week to Spain before treatment begins in a few weeks. Do you know anything about flying whilst having NHL?

Take care
Ross

Ross, I would have thought flying should be ok, but to be honest I have no idea, other than I cannot see any reason why not, just make sure they mark your file fit to travel if you do go and have insurance. If you are looking for insurance try euro tunnel as they give cover so long as its not terminal and the doctor says your ok to travel. I use them all the time now.

The wait is hard, but I always tried to park it up as nothing was going to change, so it would pop into my mind now and again but it was not something I dwelled on, so was lucky I could do that. Going to Spain will be a nice distraction so hope you do get away without any problems.

John

Thanks John for your reply, words of encouragement and advice about travel insurance firm.

Much appreciated.

Hi,

So I didn’t get to go on holiday (literally would have been boarding the plane just now!) as the consultant said he wasn’t happy to say yes or no.

I’m not seeing my own consultant until a week on Thu and the waiting is just really getting me down. I can’t think of nothing else but I’m trying to hold it all together for family and friends.

There are so many questions I have, can anyone here help?

  1. Is it possible with a relapse of NHL diffused B cell that I can be cured again?
  2. Will this have to involve a stem cell transplant?

I guess these questions are different for every case but I’m really hoping that I don’t have to undergo stem cell treatment.

Ross

Hi Ross, you are right each case is different as its down to the genetic profile of your version of the disease and ensuring you get the right treatment second time around, does it have to involve a stem cell transplant - no, but I believe by having one the chances of long term remission are increased.

Sorry to hear you did not get the break I doubt it would have been an issue but consultants can be over cautious, mine did not allow me to travel until 6 months after the final treatment as we were playing a game of watch and wait, as they had wanted to give me radiotherapy and I had said not unless really needed. I had a false positive on the CT scan post treatment so had to have 2 further pet scans 3 months apart before they would say I was in remission.

Would the consultant consider giving you the results over the phone ? may be worth speaking to the specialist nurse and see if they will, mine always did, including when they said I would need further treatment as they knew the wait was the worst bit.

John