Anaplastic tp53 lymphoma

Hi Hilo13 sorry to read about your journey so far. I rather think that your Anaplastic tp53 Lymphoma is a type of Anaplastic Large Cell Lymphoma (ALCL)..... a type of T-Cell Lymphoma.

There have been a few folks with various types of ALCL post over the years in our dedicated Non-Hodgkin lymphoma support group as well as in our T-cell lymphomas support group.

I had a search in the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

And I found just one reference to Anaplastic tp53 lymphoma in THIS LINK covering targeted treatments. 

Lymphoma Action have a helpline on 0808 808 5555 open every week day from 10 till 3. Give them a call as they may well be able to help you out further.

Where are you being treated at?....... is it a top Lymphoma Treatment Centre?.....

I say this as my local Heamatology Unit put my case out for review (I have a rare T-Cell Lymphoma and at the time it was a poor prognosis) to various centres across the UK and a plan was put together....... that was over 10 years ago and I am still here.

Thankyou for taking the time to reply I live in Wales but my consultant assures me that they communicate with hospitals and haemotology all over the country. 

Hi again Hilo13 

That’s good that your team have put your case out for review….. when do you start treatment.

Back in late 2013 my prognosis was poor but a last role of the dice treatment plan improved prospects to the point that new treatment have now been developed that are there if required…… let’s look for some positives be found for you.

I have completed four cycles of six they are every three weeks and it’s getting harder every time . I’m trying to stay positive as there is not much information out there even for my consultant by all accounts 

Just to give you a bit of hope. My daughter was told that after 3 rounds of chemo that it just wasn't working for her. Her only hope was to have a stem cell transplant but there was only 30% success rate. She's only 18. So her consultant emailed all the specialists she knew for any ideas. They tried one final chemo and this time it worked. She is now Leukaemia free! She still needs the stem cell transplant or the Leukaemia is likely to come back. In this field, there are nationwide trials continually going on and new information is always being shared. Just hang on in there. 

Yes the effects of treatments are accumulative physically and mentally….. this results in recovery progressively taking longer……

Let’s look for your team to access more helpful information for you.

Thankyou for your reply . I wish your daughter every success and a long remission. 

I am going to speak to them before my next treatment I find coming off the steroids the worse it really messes with my head . Thankyou 

Are you doing the cliff-edge drop….. cold turkey stop or are you slowly reducing the dosage.

I was slowly reducing my steroid dosage every time and had no problems.