Suspect a relapse and worried

Hi again Mike, sorry to hear the concerns you are having and yes, be reassured that there are more “tools in the box” that can be used if the need arises.

Although my type of NHL was different we used many tools over the long 20 years and went from a condition that I was told I would never see remission from...... to actually hear the word remission in September 2016....... there is always hope until there is none.

If this turns out to be the beast coming back you need to ask “.......so what is next?”

Hi Mike, the first year or two can be a bit up and down and as soon as you see any signs of possible relapse, the thoughts drift to that darker place, so you are doing the right thing in calling in and sharing your concern and hopefully they will check you out. Be assured though you are not the first to post with worries of relapse and thankfully most find out they have not relapsed, so lets hope this is the case for you. 

Do keep us updated and as Mike has said, "if" you have relapsed the is still lots more they can do to knock it back again.

John 

John / Mike, thank you once again for your quick and helpful replies.  I was called back by the CNS I was under at Guys and had a long chat.  Whilst she made it clear that she could not tell without me being seen, the fact of no other indications or B symptoms led her to be positive.  Agreed I will wait till my second scheduled check in a week.  Thanks again for the support.

Mike

Well... by way of an update.   The consultant when I visited was optimistic as the lump was not in a 'usual' place and no other B symptons and feeling well.  Thought it might be a lipoma but booked an Ultrasound.  That happened today and not a fatty lump and everyone seems far more concerned.  They want to do a biopsy this Friday. Feeling pretty deflated and convinced myself it is back.  Whilst they said not definately the case when I aksed what else the lump might be I just got flannel!

Hey ho.

Mike

Hi Mike, sorry to hear that this is in the ‘suspicious’ list.

You can only deal with facts so a biopsy is the only way to go....... been in this position on a number of occasions and from my experience there are lots of tools in the tool box that can be used.

Let’s look for a simple fix if you have to have more treatment - please come back once you know more info.

Mike, thanks for taking the time to reply it is appreciated. Will let you know what I learn. 

Hi Mike, best advice I can offer given your update is remind yourself they are just being ultra cautious and playing safe, I was in that position twice and for me it was scans rather than biopsy's and that relapse is still not the norm, no answers is going to put you in that dark place but as Mike said it can be dealt with and try a step at a time too, easier said than done.

do let us know how things progress,

John  

Thanks John for the reply... think you are right, one step at a time. Sometimes you just want to get off this roller coaster!

Mike 

Well I had a meeting today and told the biopsy did show Lymphoma cells so the beast is indeed back and quite soon. Obviously not what I wanted to hear and not sure I took a great deal in of what was said after. Seems I will have another PET scan in a few days and I think something to check kidneys. Seems I have to pass these before next step which is GDP with rituximab. Not Googled it yet with aim...if... all goes OK to Autolgogous Stem Cell transplant.  Seems there are lots of ifs and buts before you are allowed there which was a bit of a shock. He did seem to say given age and relative fitness should get there so let’s hope so. If that doesn’t work he did mention this CART. I know he needs to be factual but he did seem to dwell on the chances of all these going OK as small so not feeling especially positive about it all right now.

I have seen on here that people can and do get positive results from these new treatments so need to get the ‘it can be done’ hat on rather than the dark despair I feel now. Only been told few hours ago so hopefully when I process it all mood will lighten to see a way through this.

I did manage to ask if anything other than GDP that might be considered and the answer was no. So if there is anything else please do let me know. Also, anything I can be doing in the next few weeks to prepare for the treatment. 

Thanks, Mike

Hi Mike, sorry to read your news, not what we were hoping for but still beatable so hang on to that. First remind me where you are being treated as the may be options to the GDP+R did the consultant explain why he would only go with this treatment before I comment. At this stage the will be a lot to take in and Mike has more experience with transplants, I prepared for one but never needed it. an Auto is the right next step and at this time I would focus on that as the most important point with dlbc is to be in remission when the transplant happens. It can be done with a small amount of disease but research shows that can be less successful and an allo transplant often follows. 

Happy to post here or in the transplant group just advise where you prefer

john

is it still Guys just seen that