ALCL back 3 months post chemo (worried mum)

Hi again Leileijoy …… I have had a long day so I will reply tomorrow but you have seen my short story in your post in the other group….. but you can see all my story by hitting my community name Thehighlander 

We will talk more tomorrow…… but it’s important to realise there is lots of hope ((hugs))

Hi again Leileijoy and good morning.

As I said in your other post I don’t have Anaplastic large cell lymphoma (ALCL) but I was also diagnosed way back in 1999 at 43 with another rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing skin Low-grade non-Hodgkin lymphoma)

Over my first 14 years I was never in full remission..... only partial remission and the longest I went between treatments was about 9 months. But I can understand your concerns around her relapse within 3 months.

I eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting but I am still here all these years later living a great life.

Just to complete the story I have had 2 Allo (donor) Stem Cell Transplants (SCT for short) the first was in June 2014 with the second in Oct 2015.

Have her team done a new biopsy to check what exactly she now has?....... as there is a Primary cutaneous ALCL that is a type of T-cell skin (cutaneous) lymphoma.

Do you know what type of SCT she is having?

There are 2 types the first is an Self (autologous) stem cell transplant where the persons cancer free Stem Cells are harvested (like taking blood) then returned once the person's immune system is taken down

The second type... and I rather think the most likely as this is the road I went down is a Donor (allogeneic) stem cell transplant where the patient gets Stem Cells from a matched donor.

It all feels impossible at the moment but this can be done........ Just to encourage you when I was diagnosed in 1999 our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 68 last Nov being 8.5 years since my last treatment and we continue to look forward to what else life has in store first us to enjoy.

Happy to chat and answer questions ((hugs))

So sorry to hear this. Sadly T-Cell Lymphomas are well known for relapsing. Both of mine relapsed. One factor which should provide hope is that cutaneous (skin) lymphomas are nearly always indolent, or slow growing. It is thought that the lower blood supply in the skin (as compared with inside the body) impedes the growth of the tumour cells. Although it is in the States, there is the Cutaneous Lymphoma Foundation which may be able to provide come guidance or suggest facilities or specialists with whom her doctors may consult with for guidance. And, specilised help is certainly needed in her case. 

If a transplant is planned, siblings or blood relatives are the first choice, followed by unrelated donors. In my case, no acceptable donors were located in the world data bank of donors. Therefore, I underwent a haploidentical (5/10) match using my son's stem cells. I was 63 years of age at the time. Generally speaking the younger the better.