Anaplastic Large Cell Lymphoma Alk+

Hi  and welcome to our little corner where us folks with these rare T-Cell lymphomas hang out. Always sorry to see folks finding us but you will find its a safe place to post.

ALCL alk+ is on the rare side but we have had others come through the group so lets see if they are still looking in.

I was diagnosed with Cutaneous T-Cell Lymphoma (CTCL) way back in 1999.

I was clearly told that there was no cure, also told I would never see remission and had multiple relapses over the years but I am still around and how things have moved on as I have been in remission since Sep 2016.

Hit my group name to see my story and you may want to put some information in 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.

I had Etoposide as part of my R-EPOCH....... the treatment did its job as it was being used to get me into the position for having an Allo Stem Cell Transplant with Stem Cells from my brother..... I actually had two Allo SCTs

CHOP is an effective treatment and on the whole is the standard treatment for a lot of T-Cell Lymphomas....... CHOP Info Sheet

I am not an expert so I did put my complete trust in my various teams as they are the experts and I am sure that your Haematologist will have a very good reason for not using Etoposide but I would hope that, as my team did - he collected the opinions of other experts who have dealt with your presentation before...... is this a conversation you had?

Having looked at the info in the above link to Lymphoma Action there are other treatment tools available in the treatment box including Stem Cell Transplant I see.

I am often told that its important not to over treat....... that maybe true. But I was going down the drain rather quickly so they just threw everything at me........ and so far so good.

Keep posting as we are around to walk this with you as best as we can.

Hi and welcome though sorry to see you are having to deal with this, from what I know you are correct about adding etoposide and on another site that has closed one of the moderators was a T cell patient and his advice (he is in the USA) was always to ensure it was added and his consultant is one of the top T cell specialists in the world, he set up the T cell Foundation website.

Has your consultant explained why they won't add it and I assume you shared the research to push for it, if they refuse is the any chance you could use a different hospital where you might get the better treatment?

If it has to be CHOP then don't be scared mike has had something similar and I had rchop, its tough but do-able and if it gives you a chance and a throw of the dice then its certainly worth trying in my view, remember someone has to be a good stat.

Mike and I are here to chat to and share our experiences if it helps you make choices and navigate this disease.

John  

Hi Both! Thanks for your kind words and relies.

So it’s been quite a traumatic journey for myself. My consultant at a District General Hospital had got the local MDT to agree to adding Etoposide to my CHOP, but advised me to be transferred to the nearest Teaching Hospital for their expertise in such a rare cancer.

I transferred and saw the new consultant whom quite bluntly rejected the use of Etoposide with ‘I am the dr, I don’t need to justify myself to you’ and ‘ what job do you do, I wouldn’t tell you how to do your job’

As time was progressing I had to have my first CHOP under this Consultant. I then had to get a referral by my GP to another teaching hospital as the consultant refused to refer me to one of his colleagues or to another hospital.

By the grace of god, I am only 4 days late on my second cycle (25 days instead of 21) but I am now on CHOEP, I’m so happy that I know I have fought for this and tried my best. What will he will be. The current consultant  agreed with me that Etoposide usage in CHOP would put my individual chance of cure from 70% to 90% from a new multi-study paper that was released last year that reviewed all the separate studies on CHOEP vs CHOP.

CHOEP isn’t a standard of care under NICE guidelines, however NHS consultants use it inconsistently across the nation.

cheers 

Hope you are keeping. Safe from corona 

Well done and lets look for this to do the job.