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T-Cell Lymphoblastic Lymphoma in an 'old lady'

Posts: 2
Joined: Apr 2012

Just joined this site in search of someone like me. I was diagnosed with Stage 4 T-cell Lymphoblastic Lymphoma last fall. I've been through my 6-month induction treatments and now have about 16 more months of maintenance treatments to complete. As I understand it, this 'version' of cancer typically hits young men - not 40+ yr. old women like me! It's not the first time in my life I've been accused of being "unique!" :-)

Anyone else out there with similar age, gender, and diagnosis? I'm doing okay - today - with all that has occurred in the past 8 months but some days, I get a little freaked out about recurrence, mortalilty, etc.. Since my second treatment I've had no evidence of disease - and that, of course, makes me absolutely thrilled. But I also know that recurrence is possible (particularly within the 2 yr window) and, if the boogie man does come back, he's got a good chance of winning next time around.

Today - I'm feeling good, appreciating every moment, have a great weekend planned, etc.. Tomorrow (or, heck, let's be honest - 2 hrs from now) - something could trigger me to start worrying again. I'm interested to hear how some of you manage with long-term concerns. I'd like to box "this" up and set it on the sideline to worry about intermittently rather than trip over the awareness of my mortality each the day. My doc says that will get easier the further out I get from diagnosis/treatment - and that's probably true. Just interested to hear how others cope...

po18guy's picture
Posts: 1223
Joined: Nov 2011

There are a few of us T-cell lymphoma patients around. Yet, yours is closely related to what is normally considered to be a pediatric lymphoma! Young at heart? Might I ask what primary regimen were you on? And, what is your maintenance?

T-Cell lymphomas are known and expected to relapse. Mine did immediately after chemo. But, and this is very hopeful: there are at least three new treatments that you have probably not received, and more in the works. So, don't be bummed out if it relapses. Just have an aggressive doctor and/or get a second opinion from a center that has much experience in fighting T-Cell malignancies. I was also stage 4 and had bone marrow involvement, so there is more hope than ever.

Posts: 1
Joined: May 2012

Hi. I've been in remission for 2 years(almost) Anaplastic Large Cell. I had a large tumor in the left armpit. Stage 1 thank God but I still had 4 sessions of chop and 20 sessions of radiation and that was all after surgery. I was told it was extremely rare. I struggle a lot with fear of reaccurance. It seems very hard to pin any of my doctors down for answers. Of course, they always seem so positive about it not reaccuring but that's their job. I don't fully trust. Any help with the reality of this all? Can't figure out if it's my anxiety or me being realistic. I worry that down the road I'll get another type of cancer caused from all the treatment. I'm only 27 so I've got a ways to go..

CHRIS M001's picture
Posts: 23
Joined: Jun 2012

I was diagnosed with Anaplastic Large Cell Lymphoma Oct 2011. Just finished 6 rounds of CHOP in March. Waiting on results from my second PET scan post chemo.

Posts: 2
Joined: May 2012

I was diagnosed with LBL in1989 stage 4 I was 28 @ the time and was told it was a rare aggressive type of cancer that normally would be found in children. I was lucky to have survived that and never had a relapse from it. Now I am 50 and have been diagnosed with esophageal cancer stage 2 or 3 and was told it is not a common cancer and also normally found in older men. but I can say I was cancer free for 22 years. Good Luck to you and hope all is well. Always stay positive, I believe it helps a lot.

Posts: 1
Joined: Jun 2012

My husband was diagnosed at 43 with T Cell Lymphoblastic Lymphoma with a 11.9 thymus mass. He's undergone Hyper CVAC chemotherapy 8 treatments and now is on maintaines therapy. When diagnosed he had over 50% bone marrow involvement was Stage III and the physician said 3 months from death. He received chemotherpay to spine and had a Omay port placed in the brain for chemotherapy to brain. AS this type of cancer, although primarily a pediatrics form of cancer, is aggressive and usually will end up in the CNS.
The road has been very long, bumpy and frustrating at times. We have no health insurance and since my husband is Gulf War Veteran we are fortunate to get medical care at the VA in Gainesville FL. Although at times we questions some of the care, as to waiting if he should be stem cell transplanted now while healthier or wait until relapse and sickier. But we are there mercy. My husband has had days when he can't lift his head off the pillow even today. He's had wierd infections and had to have ports removed and replaced. He's had a retinal bleed and loss the vision in his eye for some 6 months. Has constant headaches and although they believe its the result of having chemotherapy to spine and brain in the beginning of treatment.
Times have been better, but we firmly believe that if you have faith, and the will to fight and live you can make it through anything. We will be done with maintenance chemotherapy in September and then watchful waiting begins for relapsing.
I hope that you are in good medical hands, and have a support system. Always ask questions and if you don't like your answer or think they are blowing you off as someone else. Remember your the patient and it's your body and only you can make the decision that are best for you. You have the right to be heard!!!!
Best of luck to you

Posts: 1
Joined: Jun 2012

i also have diagnosed with T-ALL , i have also crossed main course ( 6 chemos ) period , my doctor told me that 99% i will get free if not ger reoccured up to 2yrs , and 100% after 5yrs ,

pls let me know , how old are you and how you get diagnosed before treatment , and how are your activites now,

Posts: 2
Joined: Apr 2012

Good to know there are others out there like me. It's been a while since I've checked this site - working on not thinking about cancer so much!

My 1 yr diagnosis anniversary is coming up this week and so far, so good. I've been reading more about prognosis and am cautiously optimistic as I head into year 2 of treatment. I've been trying to focus on living - instead of on cancer and the other option. :-/

Of course, I've been so focused on trying to get every single minute of my life filled with things I love and enjoy that I wear myself out. I don't like being reminded that chemo still takes it out of me sometimes and makes me tired & sick. Nor do I like looking in the mirror everyday at the port and this goofy hair that I've now got - but I try to just be grateful that I'm still hear to whine about it.

I've made a concerted effort to change my life because of the 'blessing' of cancer - so in a much better state than when I originally posted. I hope all of you are moving along as well. I really appreciate you taking the time to chime in on my note.

Now, I'm headed off to a fundraiser for my Light the Night team. Family & friends who were there to support me are now walking with me as well in the Light the Night event in September for LLS. How awesome are they?! :-)

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