Breathlessness

Hi  and welcome to our little corner of the Community.

First well done in getting through R-CHOP and let’s look for the Radiotherapy to do the final part of putting this to bed.

Although I had a different treatment, R-EPOCH, 45 Radiotherapy then 2 Donor SCTs (see my profile) I also experienced long term breathlessness especially once I got back on my feet and started to get some exercise.

You have to accept that these treatments do put your body through a lot and the recovery will take longer than you would hope or even imagine..... but take each day as it comes, set some simple goals and after a period of time you will see the progression. I kept a daily diary so could actually look back and track my progress.

What type of NHL have you?

Thank you for your very quick response. I have only been told that I have NHL stage 4. I was not aware of any different types. Probably my fault, but communication this year has been difficult for obvious reasons. 

Hi again, yes there are over 60 types of Lymphoma all with their own different challenges.

You will see in my profile that I had a rare Skin T-Cell Lymphoma, first diagnosed in 1999, eventually hitting stage 4 and classed as incurable but treatable and would never see remission..... zoom forward 17 years I am in remission and living the dream.

These COVID times have made things hard but so would have thought that you should have had some not of your type on your hospital discharge notes after treatments - but made not.

if you are finding the breathing getting worse you should call it into your team but for me it did get worse the more so did but what is that phrase ‘no pain no gain’

Thank you. I have now been through the various correspondence I have received.  It appears that I have Diffuse large B cell lymphoma. 

My apparent lack of knowledge/interest can be partly explained by the fact that I was misdiagnosed twice back in June. Firstly,  incurable lung cancer followed by Birkett  lymphoma. After that I admit I adopted a head buried in sand mode and just blindly got on with the treatment that was put my way. Only now do I feel as though I have come out of that state of mind!

Well done.

So you may want to jump across to our dedicated Diffuse large B-cell lymphoma group as you will connect with others with same brand of NHL.

The round about diagnosis is not that unusual as Lymphoma can be hard to pinpoint,

Thank you very much 

Hi, yes I did experience the same, it lasted around 18 months and eventually sorted itself out though I did end up on medication to help for a while. I had 8 rounds of rchop 11 years ago.

John