Hi Sara, I'm not familiar with NHL but thought I would post a reply just to let you know I read your post and to wish you all the best results possible as you have your PET scan today and your visit with your specialist tomorrow. I'm sure you know that a PET scan is the cadilac of scans as they will know just exactly what is going on in your entire body, (other than your brain of course).

I hope someone will respond to your post soon and again, good luck today and tomorrow and let us know how it goes for you.

Take care.

Lorraine

Hello Sara,

I am so sorry that your FNHL has relapsed and transformed. I too have FNHL, diagnosed 8 years ago with grade 2 stage 3 with a relapse 2 years ago with what my consultant felt was more aggresive but not transformed. I too had RCHOP this time and am on R maintainence now. I believe that you are correct that the transformed part can be cured but the low grade will still be with you. If you had RCVP a year ago you will find the RCHOP a tougher regime, I was warned of this and found it to be so.

I hope your scan went OK and that your consultant can give you all the information you need. Do come back and keep in touch.

Very best wishes,

Christine.

Hi Christine,  this will be my first treatment, when diagnosed in Nov 2013 I was put on watch and wait, I hope treatment will be effective 1st time round, I hope it puts me into remission.

I'm still not completely sure if its transformed as did not have scan yesterday because the machine had broken - booked in for today. They said could not do a biopsy due to bleeding as spleen so big.

Just wondering how your consultant decided yours was more aggressive but not transformed? Oh dear it's a complicated disease I think.

I'll see doc tomorrow if scanned today and will know more! Either way my spleen is getting bigger, losing weight and feeling tired so something will be done.

Thank you for your reply Christine, it's great to hear people get through treatment(s) and sound good. Will let you know how it goes

All the best Sara xx

Hi Lorraine, thank you for your post. You will see from my reply to Christine scanner broken yesterday so should have it today. Will let you know whats happening, PET scan sounds good for diagnosis.

Hope all ok with you?

Kind regards Sara xx

Hi Sara,

FNHL is a complicated condition, I once was told that if 20 lymphoma consultants were in a room together each would have different theories about how to treat and how to interpret there findings and all would be valid!

I had a biopsy 2 years ago and the finding of the path lab was still follicula, but my consultant felt it was behaving in a more aggesive way, I think a lot is instinct having treated lymphoma for many years. Incendently my spleen was very inlarged 8 years ago but not 2 years ago. Still, everything is stable now.

I hope the scanner is behaving itself today, delays are very frustrating, I know. Once they get the scan results everthing seems to happen pretty quickly.

Take care and best wishes,

Christine.

Hi Sara

sorry to read of your diagnosis but you will already know you are not alone.

I was diagnosed in January of this year with a different type of NHL which is far more common.  It was high grade in the lymph system with low grade in the bone marrow.  Had six full R-Chop treatments with another drug which was on trial and two R maintenance treatments.  Good news is that at the end of it there was no trace of the disease at all in the lymph system and although they did not have the full bone marrow results the signs were that the low grade was gone as well.

I was warned that the R-Chop was quite a harsh treatment but I coped very well with it.  That said I was lucky because others who were in treatment at the same time had a far worse time than I did.  It was only after the diease ws in retreat that I was told that the consultant had been very concerned as the disease was so agressive in me, apparently far more agressive than they normally see.

One lady who was receiving treatment at the same time as me was 91 years old.  she was first diagnosed 12 years ago and underwnet R-Chop.  This time round she had four R-Chop treatments and was then on blood transfusions.  Her body was finding it more difficult to cope witht he treatment which is why she only had four.  She is still going strong and absolutely amazing for her age.

you will be surpised at how quickly the treatment goes.  not the actual day of treatment which seems endless but I was amazed because it seemed so long when i got the diagnosis to the end of treatment but it came so quickly.  I was not alone as a number of people said the same.

Very best wishes and let us know how you get on.

Gill

Hi Gill, thank you for your post and fingers crossed for you all the disease has gone, fantastic if low grade goes, what a releif. I was taken aback regarding how ill I could potentially be due to Rchop - if I had an infection -  but after reading posts I feel better that it will be ok - especially if a 91 year old lady can take the treatment - amazing. I am eager to get on with it now - I will have another Pet scan after 2 R-chops to see how the treatment is going. Will let you know how I get on with number 1!

I hope your bone marrow resultd show negative, all the best, Sara

Hi Sarah,

Glad to hear things are beginning to move on the treatment front, the steroids should give things a bit of a kick start. It's strange people always tell me they make you hungry but I always feel hungry after I finish takingf them! I guess there is always one!! Are you having your first cycle of RCHOP as an in patient over two days as I did?

Yes, it is always to good to hear about others who are still going strong after a few years. I have always found that comforting. Just remember every stage of the treatment is a step in the right direction.

Best wishes,

Christine.

Hi Christine, the steroids have given me a kick start, I feel 10 years younger! Good appetite and my spleen feels comfortable. The down side is I'm not sleeping too well, but as the days go on I feel more normal. I start R-Chop on 23/9 as a day patient, they will go slowly the first time and I will be there all day  with hospital back up if needed. I just have no idea what to expect. I'm sure it will feel very strange having medication pumped through my body!

I had reiki today at a cancer charity - Star Throwers, the lady was lovely and I feel very good right now. I have booked in to start yoga too, I have done it in the past and found it good.  As I'm off work and feel ok I thought it's a great opportunity to get as well as possible.

Thank you for your support, Sara.