Anaplastic T-Cell Lymphoma

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 daughter who has been diagnosed with Anaplastic T-Cell Lymphoma.

I am Mike Thehighlanderand I help out on the Community and I was diagnosed in 1999 with my rare Cutaneous T-Cell Lymphoma.

There a number of types of T-Cell and we have had a number come on the site with Anaplastic T-Cell Lymphoma so let’s see if the folks are still around and will get back to you.

There are also a number who have had IVAC with good results.

My diagnosis actually took 21 months, my team were confident they knew what I had but could not get the proof.

It can take time to find the correct treatment that can do the job, I had to have various treatments to get me through and you can see some of our story’s in our profiles.

We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum and the Friends and Family Forum.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

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.

We are hear to help out as best as we can.

Hi and sorry to read about your daughter, as you know (hopefully) this is a rare form of lymphoma that young people can get, here treatment to date is the norm, in many cases chop does work and when it does not then Brentuximab is the next step and this would be followed up with a stem cell transplant. we understand the worry about the treatments being delayed but the positive is she has had one round and the new treatment and hopefully that will be working and killing off the faulty cells and stopping new ones developing.

Have they said if they will do a further scan to check this treatment is working? if not worth having that discussion and keep talking to her team so that you know and understand what is happening and why and don't be afraid to ask questions and keep asking until you get answers you understand, as sometimes medical speak can be confusing.

Its also important you look after yourselves to, during this stressful time and I know thats easy to say, and hard to do.

take care and here to help if possible

John  

Thank you for your reply John. They have said they will most likely do a scan this week or next to see what's going on. Part of me doesn't want them to, what if it isn't working? They don't have a plan C.

She has been so strong and come through an awful lot but is now finding it hard. My husband or I have been spending three nights at a time with her but I have had a bad cold for the past ten days so have stayed home which is tough on everyone.

Good morning , these are indeed hard times for all the family and lets look for her team to move in a positive direction.

John has mentioned Stem Cell Transplant (I have had two with cells from my big brother). As her team are now using IVAC, this is often used as salvage treatment looking to go to SCT - has her team talked about this?.....if not ask them.

From my 20 years treatment experience the one thing we did come to learn was, there is always more hope just round the corner.

When the next best thing did not work for my condition we just asked "what is next?" as we always found that my team could find a what next..... a plan F and G?

Is she being treated at a top specialist unit in her condition? Make sure that her team are consulting world wide with other subject experts to ensure the best plans are put in place. My team were great and sent my case all over the UK and abroad and a plan was made using the combined wisdom of the experts.

Keep pushing the doors, do not let hope run through your fingers, hold onto hope nice and tight.

We are around to help out as we do understand this journey as we have walked it.

((hugs))

Thanks Highlander

They have mentioned stem cell transplant as long as this regime shows some change and she is well enough. They said though that they wouldn't just keep trying different chemo regimes, this was it.

Her temperature early this morning was 40c and she had a stiff, hot neck. She is to be given platelets, magnesium and more antibiotics. 

On it goes.....

Hi again, sorry for not getting back to you quicker but have just driven up North East to the West Cost of the Highlands.

Where things are at with your daughter at the moment will unfortunately sound so familiar to a lot on the forum as it at times t has to get a lot worse before improvements and progress can be made.

Stem Cell Transplant was my very last roll of the dice - warm hugs to you all.

Hi, some further advice which I hope helps, that's not the first time I have read people being told thats it if this treatment does not work, Mike is an example of how perseverance can lead to remission and I know others to who have challenged and lived on trials and new drugs until they got a clear result and had a stem cell transplant, so don't lose hope. Here is a link and if you scroll down it refers to some new drugs which are not licensed but are being trialled and also a link to trials to see if the are any options there, though lets hope thats not needs as Brentuximab does work well on the CD30 protein expression.

https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma-t-cell-lymphomas/anaplastic-large-cell-lymphoma

Also sometimes CHP + Brentuximab is used so again thats an option as is GEM-P.

As this is a rare type of lymphoma if she is not being treated at one of the top hospitals then ask have they consulted with the top experts to advise on options and how best to deal with any issues or setbacks and also a second opinion is always an option to, I am sure Mike will share this experiences as his consultant looked worldwide for advice. 

Its really important that good communication is in place and that the discussions are about what's happening and how they know, options and what next and that no question goes unanswered. It is tough and may result in some tough discussions but so long as people are communicating no one feels excluded and decisions are then made that a) everyone understands and has been challenged and b) is focussed on what is in the best interests of your daughter and that she is involved. 

So keep pushing and lets hope the scan shows the drug is working and if not you can have that discussion about plan C 

John 

PS here is a link to the T cell Foundation set up and run by one of the top T cell consultants in the world, it may have info that helps

https://www.tcllfoundation.org

Thank you so much for your reply John, lots of useful links and lots of reading for me to do. I have started.....

Yours and Highlanders support mean a lot and I'm very grateful.

Thank you

Just a bit of an update. The PET scan showed all tumors have shrunk slightly in size but more encouragingly the cell activity is non-existent or minimal in all tumors. This shows the IVAC hasn't worked but the Brentuximab has so she will continue with the Brentuximab. She has had approval for Crezotinib which we are waiting for and the plan is to move on to that. They have also taken another biopsy to be absolutely certain they have the right diagnosis.

Good morning, well I would take this as a big step in the right direction, you must be very encouraged.

Her team sound to be on the ball and that brings confidence and with this confidence the tunnel is not so dark.

Another biopsy is a good plan if all it does is say exactly the same things.

Keep us up to date with progress and ((hugs)) all round.