The Leukemia & Lymphoma Society - Fighting Blood Cancers
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New to the group. Just diagnosed at 32

hiram361 Registered Users
Currently Being Moderated

I just had my first round of R-chop. I still fill confused. I feel fine. How am I suppose to feel living with cancer. I think this burdens me the most. I want to start a better life style now. Can I with all the precautions of not getting sick while on chemo? Just wish there was a better way to continue and leave all the worries about the big "C" behind?

  • 1. Re: New to the group. Just diagnosed at 32
    mcee Registered Users
    Currently Being Moderated

    Hey Hiram, welcome.   On this board you will find a lot of information from folk going through this, walking the same road or who have come out the other side.

     

    I finished RCHOP in Feb and will know my status in two more days.   It's a lot of hurry up and wait.

     

    You will find ways to cope with chemo.    It seems to have common things for all, and yet everyone seems to have some varied things that happen.

     

    For me, the first RCHOP was the worst, and I suspect that was mostly due to tumor lysis (die off).   The diet to keep down potassium was so limiting, I too was wondering if I'd get through it all.    If they did not give you a list of food to avoid, call them and get one.   This is more for the first infusion, you will be able to add more things after first infusion lysis.   

     

    Drink lots of water.  Lots.   Take your prednisone early early in the morning so you can get some sleep at night if it wires you up.   get gelatin capsules from a pharmacy or health food storre and stuff the pred into them of the taste gets to you (I took mine with a cup of coffee which hid the bitter taste).

     

    Once you get to the second and third week after your first infusion, you probably will start feeling better.    You may find subsequent infusions are not too bad to handle, or you may find they are making you tired.    Fatigue comes with RCHOP.   

     

    Your hair will fall out, you might get chemobrain.    Do not feel embarrassed to wear a face mask to cover your mouth and nose, or gloves to keep your hands clean, at least for the first 10 days after your infusions, especially if you are in areas where a lot of people are coughing or sneezing.   wash your hands often and use sanitizer.  Foods might start tasting bad, but after you are done, your taste will come back.  So will your hair.

     

    drink lots of water.    get lots of rest.    breathe deep and really, sounds trite,  stay positive.   Laugh when you can.  Meltdowns happen too, and that's ok, it happens.   Once easy tasks might take longer, and your thinking might get sluggish (chemobrain).

     

    Do not hesitate to call your oncologist even in the middle of the night, if you are experiencing anything you think is weird.   I imagine they gave you a list of things to call about immediately, and post that somewhere you can find it along with their number in big font.  pre-program your cell phone too, for your MD, your Onco, (I programmed a local tow truck, my mechanic, a rental car agency, and a friend in construction in case my house had an issue, and my plumber.....heh but never had to use them but it was winter).    Your oncologist and her/his team are there for you, this is their work, they know it comes with loads of anxiety and questions.   Ask them.

     

    You will get through this.    Read some of the threads in the living with NHL group.   Lots of information there, and great people.   While we are not doctors, we are all at some stage or another with this doggone stuff.  

     

    Others will chime in soon to welcome you, I guarantee it. I know you don't want to be here, I know I didn't, but found this is a good place.    In just a few months you will be over RCHOP, and you will bounce back.  You may or may not go back to what was old normal for you, but the effects of chemo do go away, for some quickly, for some slowly.   There is life beyond chemo.

     

    remember to breathe, sit or recline, close your eyes and breathe, slow and even, it helps.   drink water.  laugh when you can.  ask your onco any and all questions about your chemo, there are answers.  

     

    be blessed,

     

    mcee

  • 2. Re: New to the group. Just diagnosed at 32
    JohnnyB Registered Users
    Currently Being Moderated

    Hey...I'm John.  Went through R-CHOP in summer/fall of 2005 for Stage IV fNHL.  Been in remission since then...knock on wood.

     

    You will feel better.  You just need to take the chemo one day at a time.  It sucks.  I stayed home for the first 10 days after the infusion since those are the days you are most susceptible to infection, colds, etc.  And then I went to work for the second 10 days.  Then got the next infusion.  I don't know what will work for you, but you need to take care of yourself during chemo.  It is hard on us.  I had some problems with my intestines during my chemo, but got through that with medication prescribed from my Onc.  And I had a high fever one evening, went the the ER just in case, and wound up feeling better after a few hours.  But we all have different experiences and reactions to the chemo.

     

    Life with cancer.  Even after close to 6 years, I still think about it... usually every day.  But I do not worry about it. It's just there.  If anything, I am healthier than before.  I'm actually working out.  I survived...and I am very, very thankful for that.  Still an electrical engineer, with about 4 years left in my career.  Still a grandfather.  And still dancing.

     

    So life goes on.  I do not in any way hide the fact that I had cancer.  I worry about it whenever I get sick.  And I worry about it some when I go back for my CT Scans.  But mostly I just live my life like before.  And if anything, I feel better just because I am so thankful to still be alive.

     

    I wish you well.  Let us know how it goes.

  • 3. Re: New to the group. Just diagnosed at 32
    mcee Registered Users
    Currently Being Moderated

    Hi Hiram, hey I forgot to mention, read posts by gdafoe on whatever form of NHL you may have.   He is webmaster of one of the best informational sites about the disease and how to get along with it and nice thing, he keeps it current (there are so many older sets of statistics and old info online, it can be overwhelming and scary). 

     

    His site:    http://www.nhlcyberfamily.org

     

    worth reading.

     

    be blessed,

     

    mcee

  • 4. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Thanks mcee,

     

    I will look at the website. I haven't been on because I have been dealing with the side effects of this chemo. It seems 10 days later my bones and joints around my hips are painful and fatique. But other than that I think I am weathering this storm. Still hard to believe and absorb that I am a cancer patient, soon to be a cancer survivor. It was hard because it first started out with Thyroid Cancer and the news just kept rolling downhill. After the biospy I was told I had FNHL. Then it was that I had Stage 2 then it had progressed to Stage 3. Just within in the last 4 months. Still hard to accept. I try to stay positive as I read some of the threads, but then you get those that ask themselves how much time do I have left. I am trying to think positive and ask myself what am I going to do with all my time left?

     

    Well I hope all is well with your results.

     

    Hiram

  • 5. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Hi John,

     

    Thank you for your post. I have been trying to convince myself to keep moving on like nothing before, but this darm chemo is holding me at bay. Bone pain mostly. But hopefully it will pass. I kind of figured this will be a long term thought for me know. I hope it gets easier as time passes. I hope all continues well for you and that I can follow in your path of living cancer free.

     

    Hiram

  • 6. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
    Currently Being Moderated

    Try and remember, Hiram, FNHL is a marathon, not a sprint (unfortunately).  Day by day, step by step, prayer by prayer, you'll get to the other side....just keep moving towards your ultimate goal, remission.

     

    Blessings,

     

    Kgirl

  • 7. Re: New to the group. Just diagnosed at 32
    jgold Registered Users
    Currently Being Moderated

    Hi Hiram:

     

    As Kgirl said.. this is a slow process.. your ultimate goal is life.

     

    Each person reacts and see issues affecting us differently, but putting it in simple words, we all have several options:  1. do nothing and worry ourselvesf to death (not productive). 2. Do something but continue to worry ourselves to death (not to productive), 3. Do something and have a positive attitude that life will be better (much more productive),  4. Do something put the energey of worrying towards a productive outcome like enjoying life, family and the warmth of the day, realize that that you are being given an oppertunity to live and do better for you and each person you interact with (very productive).

     

    Best for a speedy and long term remission

     

    Jim

     

    Try Laughing yourself to health.....

  • 8. Re: New to the group. Just diagnosed at 32
    MrPat Registered Users
    Currently Being Moderated

    Hi Hiram,

     

    I know it sucks to hear the diagnosis and then to live with it, especially at your young age. It's usually a "seasoned citizen's" disease. On the bright side, you are young and strong and you have the potential of living long enough to see the cure for this lymphoma.

     

    The advice given above is spot on. Living with cancer can help you focus your life's energy. Take some time to think about what is important in your life and pick a few things you want to accomplish. They don't have to be the big "bucket List" items. Get out there and live it, what ever it is. On the other side of the scale, enjoy the little pleasures of the day. Knowing that you are not immortal makes the small stuff sweet. I have never enjoyed mowing the lawn so much...LOL. Oh yes, really savor your relationships with your friends and family and as Jim said Laugh A Lot.

  • 9. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Sorry for the delay in getting writing back. I thank you Jim for the words of encouragement. Your right I have to be very productive and I will continue to do so. 

  • 10. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Hi MrPat,

     

    I hope your right. I would love to see a cure now for everyone, not just myself. As I prepare to go in for round 2 of chemo I hope and pray it gets easier and not harder. I just lost my hair and realize it will grow back within in time. But as another friend told me, at least I know the Chemo is working. Thank you for your support.

     

    hiram 

  • 11. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Hello,

     

    Going in for my second round tomorrow morning. I am hoping and prayer it is easier than the first round. Started losing my hair yesterday. I figured why keep the dream alive, so I shaved it off. (well my wife shaved my head, I think she enjoyed it.) Lets see how it goes. 

  • 12. Re: New to the group. Just diagnosed at 32
    JohnnyB Registered Users
    Currently Being Moderated

    Yeah....I had a little head shaving party.  My daughter-in-law had the honors.  Only problem was feeling the AC blowing on my head when I went to bed at night.  I hope the second round is easier for you.  Hang in there.

     

    John

  • 13. Re: New to the group. Just diagnosed at 32
    jgold Registered Users
    Currently Being Moderated

    My Wife and I made a whol;e production of my hair shaving time.. we took fotos and laughes ourselves sills.. I also remembe rthe weird feeling of having the AC blowing on the top of my head... I also remember looking in the mirror and wondering who the personon the other side was... until I figured out that I actually looked like my grandfather

     

    He he I am still laughing at this.

     

    We have to take life lighter and enjoy it, it makes all the difference.... BTW who ever said that your new hair comes out curly.. yeah right mine came back straight and instead of dark.. it it gray.. now I am really showing my age.

     

    Jim

  • 14. Re: New to the group. Just diagnosed at 32
    mcee Registered Users
    Currently Being Moderated

    Hey Hiram,

     

    if you are getting Neulasta to stimulate white cell growth, have you tried taking claritin (or the inexpensive generic)?   not the upgrade claritin, just the basic......for some, it really helps with the bone pain.     I read about it here on the boards, and when I mentioned it to a couple of the nurses at my clinic they had not heard about it, but a couple others had. 

     

    even the neulasta website mentions it now if I can trust my chemo-brain.

     

    I'm not a doctor and not prescribing, of course, but from all I've read, for some, it keeps the bone marrow pain away or at a much lower level.  I only had one 'big' bout of bone pain, my entire series of RCHOP.  I did have aches and twinges but not severe, so it seems the claritin generic I was using helped, or it was one heck of a placebo effect.

     

    I took it starting a couple days before infusion and for two weeks following.    Some posts I read said they only took it for a day before and a couple days after but I figured what the heck, I was rarely not taking it.  My onco was fine with me taking it too.  

     

    Might be worth a try,  but ask your onco, of course.   Oncologist approval is important.

     

    p.s.:  your hair will grow back.  see if you can find a light stretch cotton knit stocking cap to wear at night at least, keeps head warm, blocks AC chills.

     

    m

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