My partner was diagnosed in October and it is affecting his bone marrow and spleen. In turn he has needed a number of blood transfusions. He was on rdap and rchop but a bone marrow showed this was not effective. He is now commenced on a new treatment,but obviously now worried about how effective it will be. His long term plan is too have stem cell transplant but obviously can not do this if the chemo is not working. Has anyone got any information about when chemo does not work?? They are talking about him needing to take tablets if this does not work. We have not asked many questions about the tablets as we are trying to be optimistic about the chemo.
Hi and a second welcome to our corner of the Online Community.
John has given you some great info, when I started my 20 year journey with my rare NHL treatment options were few and far between but now lots of new treatments are coming into play.
Over 5 years back my condition became aggressive so my team put my case out across the experts and a plan was put together to hit it hard and then go straight to Stem Cell Transplant (SCT) with cells from my brother (I actually had 2 SCTs, it’s a long story that can be seen in my profile) and yes it did the job.
We do have a dedicated Stem Cell Transplant Forum where if required, you can connect with folks from many blood cancer who went on the SCT rollercoster.
We are around to help as best as we can.
Hi 
, I don’t know if they have done genetic tests to be fair, I will ask. I just don’t understand how the tablets work or what they do? Do they just manage the symptoms? As if this is the case why do they need the chemo if tablets help. It’s all very confusing.
Good morning , the blood cancer journey can indeed be very complicated and tends to be very specific to each person, what treatment worked for one does not work for someone else.
With over 80 various types of Lymphoma clear information and real life stories can at times be hard to get as we all tend to walk different paths but together we can combine our acquired knowledge and put our heads together to get through this.
has given you some great advise. Knowledge is power, power to get the mind in a place to understand what is going on and why treatments are being used.
We have a few note book from my 20 years on this path. The note books would go to every appointment where we would have all the questions down on paper ready to ask and we would not move until we had answers.
Information came thick and fast but as my wife was always with me, she was the extra ears and took the notes as it could be hard for one person to get all that was said. We would continually ask ‘why?’ what did that not work?..... and why do they now think this route will work?
We always had the names of the drugs and information sheets or links to information as this helps understand.
The thing we found was once we had a plan the noise in our heads would calm down a touch. some plans did not work but in these occasions we then asked “what is next? as there is always a What next?
When we started my cancer journey 20 years ago my treatment options were limited and was actually told that my condition would eventually get me.... fast forward 18 and things have changed and I am in remission.
Your question about ‘why use Chemo when tablets work?’ 7-8 years back I was on tables that were working very well but my condition changed and had to move onto chemo as this could reach the blood stream more effectively - it is all confusing but that is where you need to treats the experts.
Keep pushing the doors, keep asking your questions and keep coming in to the Community as we may not have all the answers by we do understand the rollercoster you are on.
((hugs))
