My mother (57 yo) was diagnosed in July 2024 with a very rare and aggressive type of cancer: Monomorphic Epitheliotropic Intestinal T-cell Lymphoma (MEITL), a subtype of non-Hodgkin lymphoma.
She began treatment with CHOP chemotherapy, then moved to IVE, which unfortunately had no effect. Later, she required emergency surgery due to an intestinal obstruction.
After that, the doctors started her on a salvage treatment called SMILE, which seemed to be working well. In January 2025, she had a PET-CT scan, and the results showed that she was cancer-free. The plan at that point was to proceed with a stem cell transplant.
However, in February 2025, her intestine ruptured, and she needed another emergency surgery. As a result, she had to live with an ileostomy for two months.
After the two months, she underwent a surgery to reintegrate her intestine. Now, we’ve spoken to the hematologist, and they’ve said they don’t want to proceed with the stem cell transplant because it would require further chemotherapy — and they’re afraid the intestine might rupture again.
But without the stem cell transplant, the cancer is very likely to return — that’s what the research shows.
We’re at a crossroads now, and I don’t know what to do.
Has anyone faced a similar situation? Are there any alternative options? We’re open to advice, second opinions, or anything that could help.
Thank you so much for reading.
Hi phoenix95 and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your mum. I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
I have also had 2 Allograft (Donor) Stem Cell Transplants so I can understand the challenges around being fit for the demanding transplant process.
We do have a dedicated T-cell lymphomas Group….. but with all types of T-Cell NHLs they are rare but do join the above group and put up the same post in the group and let’s see if there are any members who have navigated the same journey.
Click on the link above……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
