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AITL

Kdetraglia@roadrunner.com's picture
Kdetraglia@road...
Posts: 2
Joined: Aug 2017

April 27, 2012 I was diagnosed with stage 4 AITL went through the chop regiment then in October I did my stem cell transplant. It will be my 5 year mark in November and I have been as healthy as can be the whole 5 years ( some bone aches ). I was wondering what others with AITL think as far as relaps. Do you think it will happe.  The more I read up on this it says it's most likely to come back do you believe this?  Also if it does come back I heard it will come back with a vengeance and there will be nothing I can do   Do you feel this is true?

po18guy
Posts: 993
Joined: Nov 2011

Can it relapse? Of course. Will it? So far it has not and that is reason for comfort. Knowledge of this lymphoma, as well as treatment regimens, strategies and outcomes have increased and improved while you have been in full response. There is more hope than ever. As well, that magic five-year mark is a 100% arbitrary number. It is a statistic which applies to no individual person on earth - especially you. We are given the gift of life a single day at a time, and that is how we must live it. You are at far more risk traveling to and from work, school or doctor than you are from the lymphoma. Consider: You have no lymphoma today. How will you live today and what will you do today?

As to worry, you might try sometihng: record each of your worries in a spiral notebook or journal. Weekly or monthly, go back and review each worry. Cross off those which never came to pass. After several months, I am willing to bet that you cross all of them off. And even if one should be realized, I would then bet that it is not as serious was was feared.   

Kdetraglia@roadrunner.com's picture
Kdetraglia@road...
Posts: 2
Joined: Aug 2017

Thank you for your time and getting back to me. im just feeling really sick lately night sweats unable to sleep body aches so much worse and horrible itching all over but no rash like last time. I am a 47 year old mom of 3 and just look at my life and get so sad at times. The slightest scratch these past few years I automatically think in my head it's back and I get all nervous and call my oncologist and it ends up being nothin. So where I'm at now I stopped calling doctor and realized just deal with it. It drives me crazy and venting sometimes helps me but nobody in my life understands. i do keep going each day that God has given me yet I live with so much stress about my cancer and I fight it alone in my head. I greatly appreciate you listening and your response was nice. Have a blessed day! Thank you

FLmother1
Posts: 1
Joined: Sep 2017

My 45 year old son was diagnosed with AITL in June of this year 2017.  We have finished the 3rd round of EPOCH Chemothereapy.  His Petscan showed that he is in remission.  We still have 3 more rounds of EPOCH and then we go for a autologous stem cell transplant.  It is all very scary.  I am his caregiver until his treatments are done.  He will then be on romidepsin for a year to prevent reoccurrance of lymphoma.  Our biggest hurdle besides getting him better is getting him any aid for housing.  He is unable to work and we have applied for food stamps and disability.  So far nothing.  Food stamps said he had to spend his 401K before he would be eligible.  They want him to give up his future in order to have a chance at a future.  This is ridiculous.  Has anyone had success in getting aid from anyone.  The cancer foundation has been worthless.  

ShadyGuy's picture
ShadyGuy
Posts: 390
Joined: Jan 2017

I assume he is applying for SS disability. To qualfy you need to have paid into social security for a minimum of 40 quarters - 10 years - and be unable to work as certified by a doctor. Then there is SSI which is basically welfare (no requirement to have paid in) but is usually not enough to live comfortably on. You will find that in most states you cannot qualify for MEDICAID if you have savings or own property. Fact is most people with lymphoma continue to work. Would his employer certify that he is unable to do his job? If so that may help. Foodstamps should be easy even if based only on income. There is also, in my opinion, a strong gender bias against single men as compared to single women, especially single mothers. That's just a fact.

po18guy
Posts: 993
Joined: Nov 2011

A certain amount of anxiety is certainly involved with the lymphoma journey. It builds. Slowly at first, and then perhaps more quickly. At some point, it can greatly affect one's life. If thoughts of relapse become pervasive, repetitive or intrusive, then it is time to seek either counseling or perhaps ask doctor about medication to assist with anxiety. The symptoms you are experiencing are certainly worth following up on, even if - especially if - they amount to nothing worrisome.  

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