My Mother's Story – Looking for Advice and Support

Clinical Trials
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My mother 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.

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Hi @phoenix95 I am so glad that you have posted it sounds as if your mother has a very complicated, individual medical history and that might make it very difficult for others to share similar experiences.
As you say your mother could ask for a second opinion.
This might be via the NHS, via any insurance policy she might have or paid for privately by her.
What are her medical team saying is the way forward at this point?
You say without the stem cell transplant, the cancer is very likely to return — that’s what the research shows.
Has your mother talked to her medical team about this?
Perhaps your mother might write down her fears, questions and practicalities to discuss with her specialist nurse or medical team.
It must be so difficult for you obviously caring about your mother, but also being so powerless to make her better.
I cannot imagine how you are thinking and feeling.
Please do look after yourself as well as you are trying to look after your mother.
Please do let us know how you are getting on.

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Hello Phoenix95

Having gone through so much treatment and getting so close to transplant, what a devastatingly difficult and complex situation for your Mother, yourself and family.

I can see that Erica has responded with possible suggestions. I hope you do not mind this additional information. Most haematology teams would prefer you are confident all treatment options are explored, do you feel able to ask for a second opinion? Here are two links to information about obtaining a second opinion, both contain useful details:

It is always faster for the treating team to refer for a second opinion (and for all vital information to be gathered and forwarded to another Haematologist) but if you feel unable to go down this route a GP might be able to help with this.

There are probably no easy answers but if it would help to talk this through, Blood Cancer UK provides a separate support service & helpline delivered by experienced nurses. The contact details are: 0808 2080 888 or email: support@bloodcancer.org.uk.

Please feel able to keep in contact and take care of you.

Lynne, Clinical Trials Support Nurse

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I have myeloma and have had 2 stem cell transplants and my first was not easy I thought I was going to die.
I had ESHAP for 3 cycles before harvesting my own stem cells and a transplant not long after
The melphalan (chemo before cells are put back) destroys the mucosal lining from mouth to bowel. Further into the transplant comes tummy ache and diarrhea and pain in the bowel. I was constantly sick and had migraines

Some of the questions you could ask
Is the transplant using mums cells or a donor.
If using a donor what side effects are there
How would the priming chemo affect mums intestine and would it cope with the chemo
What chemo will it be
If mum doesn’t have the transplant where do you go from here and the best quality of life mum could have going forward

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Hello!

Thank you all for the responses.

I forgot to mention that we are not from UK (I now realize this was an important thing to mention :woman_facepalming:). We are based in Romania, but if the doctors here cannot do more for my mom, we will most probably have to look for something into another country.

Before the intestine ruptured she was scheduled for an autologous transplant (not from the donor). They didn’t tell us exactly what chemo she should have done before the autologous transplant. They just told me last week that they don’t want to risk doing the transplant anymore.

However, I cannot understand this. How can you not do the transplant if you know the cancer can come back in a couple of months if it didnt by now..?

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Hello Phoenix95,

I am sorry, it is more difficult to offer suggestions when not knowing anything about the health care services in Romania. I assume there must be options to obtain a second opinion there or in another Country? Does your Mom have access to a nurse Specialist who you could talk to about this?

In the UK there would have been a case review of your Mom’s situation and discussion between several doctors and clinicians to consider potential treatment options. With your Mom’s permission could you ask to see the treating Consultant to understand their decision about not going ahead with transplant?

Lynne

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