Angioimmuneoblastic T-Cell Lymphoma???

Hi @thorsmom1959. Welcome to Connect! We are so glad you've joined our community. I'm sorry to hear about your diagnosis; I know that must be scary. How is chemo going? Chemo treatment is definitely a hard journey, so I hope you know this community is here for you and rooting for you! Please keep us updated on your progress.

I wasn't able to find any previous posts directly related to AITL but I am tagging @travelgirl, @bobc, @djzlady96 and @lacey who have posted about lymphoma in the past and may be able to provide some support and insight.

Also here's a list of non-Hodgkin's lymphoma (NHL) clinical trials open now at Mayo Clinic. These are the latest treatments under study. http://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/care-at-mayo-clinic/clinical-trials/con-20027792

You may also want to read this thread and meet other members talking about NHL: https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-2c0eb7/

@thorsmom1959 sorry you are here. I have follicular lymphoma diagnosed on 1/4/16. My lymphoma was found 2 weeks after being diagnosed with Cecum Colon Cancer stage 1, during a CT scan.
I am currently on a watch and wait treatment plan. As I do not have any symptoms. I just have a few enlarged lymph nodes near my aorta. Every 3 months I need a set of CT scans and blood work done. I return back to the DR in August for another set of scans and check up.
Mayo does have a lot of clinic trials ongoing. They also are conducting many lymphoma studies.
hugs my friend and wishing the best ..God Bless

My daughter, age 34, was just diagnosed this week with Angioimmunoblastic T-cell Lymphoma. Needless to say, we are terrified. How is your chemo going? Any insight on your short journey would help us immensely. Are you getting treatment at the Mayo? I apologize for all the questions my head is spinning.

Hi @kthomson, I'm tagging @thorsmom1959 to make sure that they saw your post about your dauther's recent diagnosis with angioimmunoblastic T-cell lymphoma. I can imagine you are both terrified. What treatment had been recommended for her? When does she start?

@kthomson
I was diagnosed with AITL in August of this year.
I am on round 5 of 6 BV-CHP and will have a autologous stem cell transplant in March.
PET shows I am in remission after rounds 3.

I am wondering how your daughter is doing? I know this is a very scary, rare disease and it is hard to find others who have AITL.
Thank you for any advice or suggestions.
Jennifer

I’ve just been through having a colonoscopy and CT scans,
Waiting for my results, I just went on my doctor notes and have seen it says suspicious for Tl lymphoma,
I’m terrified now ,

Hi there. I was diagnosed with AITL in early October last year. I was so sick when I got my diagnosis, so sick that I started my chemo the next day. Had 6 rounds of R CHOP and then 5 weeks later, an autologous stem cell transplant. I am in remission and feeling great. Lost all my hair twice, and it is now coming back curly.

The treatment is not easy, but oh my goodness, it saves lives!
I have gone back to work.
My only problem is that it seems to have kicked off an autoimmune problem in that my immune system is killing off my platelets and neutrophils. Thrombocytopenia and neutropenia. My platelets are slowly getting better and are now averaging 50. My neutrophils are not so good so I inject with the GCSF stimulating filgrastim 2x a week, and a blood test 1x week. I haven’t had to have a platelet infusion in a long time. Had my stem cell transplant March 18 and was discharged from hospital 3.5 weeks later.

I had a hard time eating during my stem cell transplant so was encouraged to do tube feeding. I consented thinking that anything that would speed up the healing—cool. Getting the tube inserted was absolutely no big deal. There were some procedures that were pretty tough, but if you think … well this is just going to be bad for 1 min, 2 mins and then it ends, well, you’ll find your way through it.

I am now walking 4-5 kms a day and swimming 1200 metres. It was a slow build back. I started back with 5 mins of yoga a day. And slowly added more time.
Sam Neill the actor has the same blood cancer and has been in remission and is back acting.

Take a day at a time. You only need to worry about today, do not cross bridges until you come to them, you don’t need to know every variant of this disease and all the things that can go wrong. Mostly it goes just fine. Trust your team, tell them everything.

I think it is one of the good ones to get. In my opinion. The prognosis looks terrible, but the stats are done over 20 years. AND there has been huge improvements in the last 5. Don’t look at the stats, and stay away from google.

My advice for getting through…
Unsubscribe from anything political or sad in social media. You’ll need yr mind just focusing on good things. I now have a love for the baby elephants, orangutans, cats, dogs, and people that do cool adventures - cycling from Finland to Singapore, for example … thats how I entertained myself. No movies or tv shows with tension or suspense. Take your mental health seriously. Walk as much as you can. Be strict about who visits - making sure they are all well. Keep away from crowds, mask up. I still do this.
Liz
In New Zealand

@bizzylizzy
How was recovery once you were back home? Did you have a caretaker? Do you have animals?
I hope you don't mind me asking you so many questions.

@thenester while you’re waiting for @bizzylizzy to reply, here is a like to Mayo Clinic’s caregiver guide. But there’s much more information than that…carefully look through the entire menu. You’ll see guides for
Autologous Stem Cell Transplant
Infection Prevention
Packing List
Helpful Apps
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
Do you have a caregiver lined up?

Thank you!
I've been doing my research on this reading through Mayo, MD Anderson, Dana Farber etc.
Very helpful.
I'd love to hear about the experiences from actual people. I have chatted with a few people on another site and that has been helpful.
I do have a caregiver (s) My husband and my sister will stay with us for a month to help out.

You are a very kind human-I see that you chat within quite a few threads. Your advice and know is invaluable!