Hi, my husband has been diagnosed with an extremely rare form of t-cell Lymphoma (MEITL) in May 23. He has had a really hard time since going into hospital end of April, and remains an inpatient due to the complexities of his illness. He suffered a perforated bowel when he was first given steroids as part of his treatment, and needed urgent bowel surgery. He is on TPN feed due to a risk of bowel blockages. The Lymphoma is incredibly aggressive and fast growing, he commenced chemo 6 weeks ago. Initially CHOP regime then they added etoposide for the second and third round.
My husband had a CT PET scan last week, and the results showed that the chemo wasn't successful, that the Lymphoma had grew and spread to his pelvis and groin. He is alot of pain and discomfort at the moment. The surgeons opinion was to treat the Lymphoma and his symptoms should ease. Having spoken to a Haematology consultant today, they are keen to start him on a new regeme called DGP however have expressed the rarity of my husbands illness, saying that it is less than 1% a person is diagnosed with the disease, therefore limited information surround successful treatment and poor prognosis. We have been told that if the DGP works, then he would receive an auto stem cell transplant, however if it does not work there is no further avenues to explore in terms of treatment. They have said if DGP does not work, he would only have up to 12 months to live.
In the mix of this my husband is still at risk of a bowel blockage/ perforation which would ultimately mean surgery and would delay chemo: judging by the aggression of the Lymphoma this is very worrying.
I'm just wondering if anyone knows of any good resources about this specific disease, if there is a specialist that we could go to for further advice around treatment options, both uk and worldwide we are desperate to do whatever we can. My husband is only 37 and we have two young children, so this news has been devastating for us. We are looking for any hope or help that may be offered within this group.
Thankyou for reading,
Sarah
Hi Miscywoo and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with my rare type of T-Cell Lymphoma (CTCL - 7 in a million) eventually reaching Stage 4a in late 2013 so although my T-Cell Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Monomorphic Epitheliotropic Intestinal T-Cell lymphoma (MEITL) is indeed rare and having lived with a rare Lymphoma there are challenges with regards to treatments.
Back in late 2013 my condition became very aggressive (you can use this link to See my story) and I was given a few years if the plan did not work..... part of the plan was an Allo (donour) Stem Cell Transplant...... I actually had two as the first did not work.
As for good information the best place to look is at Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They also have a very good Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you support and may have information for you - open every week day from 10 till 3.
They run regular Support Platforms specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
Always around to help more or just to chat.
Ah Sarah I am so sorry to hear this news, there are unfortunately no certainties when it comes to the treatment of Lymphoma….. my deepest and heart felt condolences to you and your family.
The community does have a Bereaved spouses and partners support group where you can get support and talk with others who are navigating this journey….. and do also consider dropping in past that Maggie's Centre at the Freeman Hospital as these folks will give you and the family amazing support.
((hugs))
Hi Honey123 and welcome to the community but sorry to hear about your friend and now your son being diagnosed with a type of CTCL……. I was diagnosed with my CTCL (Mycosis Fungodis) way back in 1999….. I most likely had been living with it for a few years before and I am still here living a great life.
Do you know the exact type of CTCL he has as there are a few and each one can develop differently ((hugs))
Well it’s a small world when you get to talk with someone else with Mycosis Fungodes……. It took me over 17 years to meet someone let alone talk with someone with MF.
Out of the different types of CTCL MF is the most treatable and regardless my story it is very unusual for folks to go within a country mile of what I had to go through.
Your son is being seen by the top man in the UK for all things MF. Prof Whitaker was actually involved in recommending my various treatment plans once my MF became more tricky to handle. I live way up in Inverness so it’s not that simple to see these experts.
As a family we seen this as being a chronic health condition that was treatable when required and I lived and worked a normal life teaching in a demanding education job on a full timetable until I retired in 2011.
Sime famous people have lived their lives with MF…..B. A. Baracus of the original TV show the A Team and the late great Murray Walker OBE of F1 fame who lived to be 97 and is proves what many consultants say. “You live with MF and you most likely won’t die because of it”
When you want to get specific reply’s about MF or ask questions you may want to put up your own post when required as this helps keep your suppprt in one area. Just click “+new” or “+” in the top right next to the group title and you are ready to go.
Accurate information is important and no better place for all things Lymphoma is the Lymphoma Action website.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms both for patients and family. I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where your son can be linked up with someone who has walked the same treatment journey…… even with MF and he may bump into me there
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
Always around to chat.
