NK/T-Cell Lymphoma

Good morning and welcome to our little corner of the Community although never great to see folks finding us.

Sorry to hear about your brothers diagnosis and the stress this has brought on all the family.

I am Mike Thehighlander and I help out in our blood cancer forums. You will see from my profile that I had a diffrent rare type of T-Cell Lymphoma and went through all the stages until I reached Stage 4a2. - that was in late 2013 and it was 6 years yesterday I actually had my last biopsy just to check progress before my chemo started...... and I am still around.

On the whole stage numbers in Lymphoma are used to identify the very best treatment - they are not seen in the same light as those used in solid tumour cancers.

We have had a number of folks with NK so let’s look for them to pick up on you post and SMILE is used regularly as the chemo of choice for NK......, has Stem Cell Transplant been talked about as a future route that can be used?.

This is scary as these types of cancer can be found as part of another medical investigation......... but on the whole blood cancers are treatable normally leading to positive results.

Keep talking with us as we can walk this with you ((hugs))

Hi and welcome, but sorry you have found the need to post, I had a B cell type of lymphoma so not the rarer type your brother has, though I was stage 4 and was diagnosed in 2009, so 10 years post treatment. Don't worry about the stage, blood cancers are not like solid tumour cancers so a stage 4 diagnosis is not a death sentence. The staging is a tool that is used to inform the treatment plan and it sounds like is disease is extra nodal so that's why its stage 4 

This helps to explain https://lymphoma-action.org.uk/about-lymphoma-tests-diagnosis-and-staging/stages-lymphoma

The have been a small number of people with this disease over years and lets hope someone sees your post and can share their experience. The have also been others who have had SMILE to as a treatment so they may post to.

any questions just ask

John 

Hi Mike,

thank you so much for the quick response.  Stem cell transplant was mentioned as something that we may have to do after 4-6 rounds of SMILE. 
Congratulations on 6 years!  Have you completed treatment? Or Are you in chemo currently, if you don’t mind me asking. 
thanks,

andrena 

Thanks, John.  

i really appreciate you taking the time to write me back.  Congratulations on your 10 years, that’s wonderful. 
im curious if you have long term side effects from the chemo treatment. I ask because I’m worried about what his life will be like after chemo etc. I want things to go back to the way they were. It’s scary to think he may not get back to who he was before all of this. 

thanks,

A

Good morning Andrena........ where you up during the night or are not in the UK?

You can see our stories in our profiles just hit our forum names like Thehighlander.

My main treatment (second Stem Cell Transplant) was completed in October 2015 so no more chemo or Radiotherapy but it was a long recovery with lots of drugs until my all new immune system grew.

Over the 4 years post SCT number 2 I have had lots of infections with 5 times back in hospital (31 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Septicaemia, A Fib and three months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin........ but in September 2016 I was told I was in remission and NED (No Evident Disease) for the first time in over 17 years from a conditioning that back in 1999 I was told I would never see remission from.

I was discharged from my team back in June 2018 and have not seen them again - no clinics or follow - happy days.

We actually do have a dedicated Stem Cell Transplant Forum where folks going through SCT hang out and support each other - look ya up if and when you end up on the SCT rollercoaster.

We are always around to help ((hugs))

Hi again - I just noticed your question to John:

“........ I'm curious if you have long term side effects from the chemo treatment. I ask because I’m worried about what his life will be like after chemo etc. I want things to go back to the way they were. It’s scary to think he may not get back to who he was before all of this”

For me, I have some long term medical issues that can be attributed to all the treatment I have had........ getting back to where I was before this all started was never in our minds...... it’s was more “Weber’s this to work to gain life itself....... and we will fashion a new life once we come out the other end of the tunnel”

At times, living the post cancer journey is like living in a parallel universe - you can see your old life but regardless what you do you can not get back on that same path.

Following my many years of treatment and now over 4 years into my post treatment life, a situation I was unwillingly put into. It did actually make us review life and everything that we once thought important.

So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

((hugs))

Hi Andrena, the simple answer is yes I have some long term effects from the treatment here is a link to a paper that's worth a read.

http://www.livingwell-cancer-support.org.uk/docs/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf

As Mike has mentioned, life and the person diagnosed, in this case your brother, its likely the will be change, however the key point is we all react differently and it impacts on us in different ways. 

What I would advise is don't see it as a negative, some of us feel life improves because you focus on what is important and the stuff that's not - then you don't waste time or energy on. So at this stage try not to worry which is easy to say and hard to do and see how it goes. He could be one of the lucky ones that come through treatment with limited effect.

John 

I think the best advice I got from Mike was write everything he/ you are told by the Doctors ect down, then you always have something to refer back to and use it to ask question of them at a later date that did not come to mind at the time.

my very best wishes to you and your brother it’s not an easy time for anyone, but treatments are very good, they wear you out at the time, but all that is worth it in the end.