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  • My dad has Non Hodgkins Lymphoma, Low Grade, Stage IV

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    Old 12-09-2010, 05:10 PM   #1
    rockcandy96
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    My dad has Non Hodgkins Lymphoma, Low Grade, Stage IV

    Hello,

    My dad was recently diagnosed with low grade NHL at stage IV. He is 59 yrs old. I am wondering what to expect in coming years. I have read some of your posts, but I would like to hear from someone who has the exact same diagnosis as my dad. He does not suffer from night sweats, but has had tremendous weight loss and fatigue. He completed his first treatment of Rituxan today and it went well. It was supposed to last 8 hours, but since he was having no adverse reactions, they bumped up his dosage and he was out of there in 5 hours with no side effects. I am wondering what the life expectancy is and quality of life is down the line. Any information would be appreciated. Thank you.

     
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    Old 01-10-2011, 01:34 PM   #2
    cardshark
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    Re: My dad has Non Hodgkins Lymphoma, Low Grade, Stage IV

    Quote:
    Originally Posted by rockcandy96 View Post
    Hello,

    My dad was recently diagnosed with low grade NHL at stage IV. He is 59 yrs old. I am wondering what to expect in coming years. I have read some of your posts, but I would like to hear from someone who has the exact same diagnosis as my dad. He does not suffer from night sweats, but has had tremendous weight loss and fatigue. He completed his first treatment of Rituxan today and it went well. It was supposed to last 8 hours, but since he was having no adverse reactions, they bumped up his dosage and he was out of there in 5 hours with no side effects. I am wondering what the life expectancy is and quality of life is down the line. Any information would be appreciated. Thank you.
    Hi and welcome to the boards. I am sorry to hear of your dad's diagnosis. I was diagnosed with NHL 24 years ago. I went through 18 months of high dose chemotherapy and radiation and the NHL has been in remission ever since. When I went through treatments a number of the meds that were being used were experimental and doctors have learned much in the past 20+ years. For example, they have learned that most of the time NHL responds just as well to chemo alone as it does to chemo & radiation so most of the time they only use chemo to treat it. Because of the stage of life your dad is in and the fact that he is only having chemo decreases the likelihood of severe long term/late effects. For example, I was still growing when I had the radiation to my leg as a result of the radiation the growth of that leg was slowed and it is smaller than my other one which has lead to back problems and headaches; because your dad is done growing and not doing radiation he doesn't have to worry about that happening to him. You also need to remember that just because one person had long term/late effects from treatments doesn't mean that your dad will. I know a number of people that have had NHL and had chemo treatments 15+ years ago and aren't having any long term/late effects; I know others that are. Like most things it varies from person to person and you just have to wait and play the hand as it is dealt to you. Don't stress over the what if's or you will drive yourself crazy. The best thing you can do is just be there for your dad, encourage him, remind him everyday of how much you love him, keep a positive attitude and hang in there.
    cardshark

    Last edited by cardshark; 01-10-2011 at 01:35 PM.

     
    Old 01-12-2011, 04:45 PM   #3
    mudrunner
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    Re: My dad has Non Hodgkins Lymphoma, Low Grade, Stage IV

    As cardshark suggested, everyone responds to cancer treatments in various ways. I’m a little over three years out from stage 2 grade 2. Just turned 68 last month and PET/CT then was still clear. Had no particular symptoms other than nodes in left armpit and left neck popping up. Did CPV-R and showed clean for six months. Then went on Rituxan “maintenance” and stayed clear for a little over 3 months. Next did radiation thing to left side of chest and neck, which seems to be holding. Last spring, decided I’d be around long enough to justify getting an annoying cardio problem fixed.

    This is my third cancer adventure. Prostate in 2001 was fixed by surgery. Multiple skin cancers also done by surgery. Other than the biopsies, my fNHL has been just chemo and radiation. The cardiac ablation for AFIB was the easiest (they just make three little holes for the catheters). I’ve entered all of my numerous medical interventions with the expectation of success in staying around for at least another 10 to 20 years and you should encourage your dad to have that same expectation.

    While I do NOT believe cancer can be “willed” away, I do firmly hold that “state of mind” can significantly affect the outcome of treatments involved with any form of cancer. I will not lay down (very long) for any of the debilitation involved with any of the chemos, radiation or surgeries required to keep these old bones moving.

    As to the “quality of life” you speak of: the CVP-R thinned my hair out for some time but it came back OK. Although, it seems to have a longer term affect on my memory (or perhaps it’s just geezer accumulation in the brain cells) as I’m still having occasional difficulty getting a word or memory straight. On the plus side, the associated sickness goes away after the cycles are complete. The radiation treatments were significantly less than pleasant but I was assured that mine was an unusual reaction. The hair loss from that adventure appears to be permanent but since it’s on the back left side; I can’t see it and few people have had the moxie to ask about it, so I don’t care.

    You can help with encouragement, but ultimately it’s up to your father to carry thru with treatments and fight the fatigue and unpleasantness associated with them. After three successful (so far) Big C encounters, my wife and sons expect nothing less from me and I try my best to accommodate. I expect you dad will do the same.

     
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