Hi..
My dad just got diagnosed with DLBCL stage 4. Doctors say that the tumor in his neck is pushing on the nerves which is causing him to lose function at his legs (he is currently paralaised). He will start his first chemotherapy in two days.
We are all hopefully that he will be able to walk again after the tumor shrinks with chemotherapy.
Does anyone have a similar experience? Is there hope that he will walk again?
Thanks
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that your dad has been diagnosed with DLBCL.
I am Mike Thehighlander and I help out on the Community. Although my type of NHL was CTCL my main growth was also in my neck. The pain was debilitating, yes I could still get around but not that much due to the pain.
By the time I got my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted but the initial 15min blast of chemo got me through our family Christmas.
What is the name of the treatment he is having? as there are a number. My 6 cycles of R-EPOCH did the job really well, melting away the growth areas over time so let’s look for this to happen for your dad. We are not medical professionals and only have our own cancer journeys to look back at. My chemo was 5 years ago now, but I did have to go on and have more types of treatment. I am left with some neck pain as I do have some damaged nerves, these are more a nuance more then anything but are controlled with strong pain meds.
His team are the experts so have you actually asked them about what this treatment journey will look like and what to expect as in reality every persons treatment journey will be different.
Lymphoma will normally respond well to treatment delivering good results so let’s look for this to be the case. Once treatment starts growth areas will melt away so he does need to drink lots of water to protect his kidneys from the toxins.
When you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you.
Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page.
I am sure that John and the others who had this version of NHL will be along to give some more help.
Keep posting as we are around to walk this with you.
Hi again, this is such a hard time for you all but keep on believing that this can be overcome.
The addition of RItuxitmab would always help but it is unfortunate that they do not have access at this at this point but a good number of folks have had good results using CHOP only.
Where is your dad being treated?
This does make all this that more hard for you all. As I said the growth my growth area did respond very well to the treatment so let’s look for this to be the case for him.
I went on to have further treatments and following my second Stem Cell Transplant I was basically in a wheelchair for a few months then onto walking sticks for a further few months. This was due to muscle wastage with being bed bound fir long periods of time during treatment.
I would expect his recovery to take time even although the treatment may have cleared up the growth. Have they said if he will require any radiotherapy?
Keep posting.
