Follicular lymphoma

Hi Kimmie17 and welcome to this corner of the Online Community and great to hear you are in partial remission and lets look for the job to be completed with the rest of your treatment.

Although I have a different type of NHL I was told in 1999 (yes a long story in my profile) that my type of NHL was treatable but incurable and FL basically fits into the same box .

So over the years I have had many time that I was in partial remission.

A good consultant friend (who is also my chest consultant) told me to develop the mindset that I had a chronic illness like diabetes and that it was treatable but most likely not curable.

This is how I have lived my cancer journey with lots of ups and yes, lots of downs..... but over these years I have seen the ongoing developments in positive treatments.

I am now over 4 years post my last treatment and am in what is seen as complete remission but under no illusions that it will not show its face again - but happy with the results.

It’s all about developing a mind set that accepts the hand you have been played and work with it the best as you can.

You will need to find a mental mechanisms to deal with the low times and be able to fight the battle between your ears....... don’t let the FL define you, it’s up to you to work on your way forward in this and live a full life.

I am sure that some of the HL folks will pick up on your post and give their take on this.

In the mean time I will be around to listen and help as best as I can.

Hi that is really good news, I was the same after 4 treatments of R-CHOP and after 6 treatments I was given the news that I was in complete remission I am now on maintenance treatment (an injection in my stomach every 8 weeks ) just had my 4th maintenance treatment, and all is going well

So you really should be happy with your treatment to date sounds like your it's doing the job, like you I was a little disappointed with the scan results after my 4th treatment and it took me a few days to get my head round it

Stay positive and strong good luck

Hi Kimmie, first the treatment is working so that's good, second it will continue to work - are you only having 4 rounds or are more planned and finally you have had the mildest treatment, R on its own and you have had a good response thats really good as they have not used chemotherapy yet.

So what I am trying to say is you can focus on the positives or look for negatives, I found being positive and looking for the "silver lining" or what ever phrase you wish to use, helps

 John 

Thank you so much,  it helps to know others have been in partial remission and have now complete remission. I'm still getting my head around it but massively appreciate your advice.

Hi John

I'm only having the 4 R treatments for now. I was told it could have deferred chemo or further treatment for 2 to 3 years, but of course, we don't know ♀️ thank you for replying, every positive helps outweigh a negative!

I'm always really happy to hear of other people successfully managing the treatments. Long may it reign!

Hi Kimmie17

i absolutely understand where you’re coming from it’s such a lot to get used to. On one hand, you should feel delighted that your treatment has had some impact  but there is always the awareness that it might return at any time.

I've got my results appointment Monday after my first 6 rounds of rchop  and follow up CT and would love to be in complete remission for a while anyway so I can return to work etc but steeling myself for not such great news so I’m not too disappointed should this not be the case. 

I find it quite amazing at how far I’ve come mentally since my diagnosis in September as I had absolutely no idea how I was going to live with this uncertainty but I’ve become so accepting of this being how it is from now on!  

Hi Kimmie17

30% is a good reduction after 4 x rounds of chemo. Tumours have reduced enough that they are not compromising your organs which is great. 

My main toumour was 17cm and reduced by 50% after 3 rounds ..... so still 8.5cm......then reduced to about 4 or 5 cm of scar tissue after 3 more rounds, which for me is complete remission.

Trust in your medical team and be glad that for now there is no more chemo and try to concentrate on living your best life. Your medical team have given you that chance, so try and grab it and go with it.

Bes wishes

Tina

Thank you for the reassurance

Thank you all good wishes to you for Monday