Hi all.
i don't understand this website so I have no idea which group I’m posting this in. After some months of symptoms I was diagnosed with large diffuse B-cell non-hodgkins lymphoma triple hit in Oct 201
I went into kidney failure soon afterwards due to the tumour blocking my ‘tubes’ inside my pelvis. I had bilateral nnephrostomies and dialysis for a few weeks and did eventually recover once the tuur was gone, but was left with neuropathy in both feet and legs a drop foot and a paralysed lower a wheelchair user. My first remission was in March 2019, symptoms started again in MayMorchemo happened in August which I had a neurotoxic reaction to so although in remission again I was told I could have no more chemo. I relapsed again in Sept and in Oct was given 6 months to liv This meant I was eligible for the new CAR-T treatment. I had this in November but had a severe cytokine release syndrome which led to neurotoxicity, high fever, hypertension, seizures, pneumonia fland VrE syndrome (don’t know what that is) I was in ICU for 3 and a half weeks and for 2 and a half of those I was in a coma not expected to live. I have very few memories from Nov 27th to Dec 23rd 19. I was discharged on Jan 10th and my 3 month post CAR-T PET-CT scan has shown that the treatment has worked and my cancer has gone. It seems everyone is delighted but me! Yes I’m happy but I am sll living with the disability and constant pain caused by the neuropathy. I used to be a keen fell walker and Geocacher (google it) but now I cannot even do the housework and can no longer drive. I sperately mourn for the life I had. And some days all I can do is sleep. I am so depressed I feel like what’s the point of living, I can’t do any of the things I used to do and now this post has random sad faces and letters missing. Even this has gone wrong for me
Hi again Lellynelly
At this point in time we don't have a dedicated CAR-T group but Stem Cell Transplant is basically on the same page as CAR-T so you are in the next best group.
In some measure I can understand the post treatment left overs you have. It is early days post a major life changing event so do not be over hard on yourself.
The random sad faces are unfortunate (it can happen) but I take this as on indication where life is for you at the moment........ if you were typing 'happy' things it could also be randomly posting happy faces.
What is the silver lining in this? well a clear PET..... Is this enough?......... at this time in the journey possible not. 
I am 4 years 3 months and 11 days post my second Allo Stem Cell Transplant and can now look back to first 6 months post treatment and can totally connect with a good number of the treatment left overs.
I can't say that the recover, recuperation and healing happened quickly....... it just took time and more time than I first was willing to give it.
There are a few who post who have been on the CAR-T journey so lets look for them to pick up on your post.
Regardless the cancer journey, many people do look at this great paper and find it one more stepping stone in the way forward.
We do also have a general Life after cancer group, its a great place to talk with other who are walking the post treatment life.
When you have some time you may want to put the information in this post into your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.
((hugs))
