The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 345. Re: Hi- New to the group
    Pamk Registered Users
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    I too am new to the group and this is my first comment.  You appear to have the same type I do.  I had only one node in neck that was removed, pet scan had several abdominal nodes that were "too small to worry about now".  Just told 2 weeks ago that BM biopsy was positive and oncologist wants to 'watch and wait" rather than start chemotherapy and radiation as previously mentioned.  He said the treatment would not do any good right now.  Told to see him in mid-Dec for additional tests.  I am very confused right now feeling there's no hope.  Not sure if I've had this for many years and it's close to the end or if there's several years of fighting this - guess I won't know until next round of tests.  I'm happy for you that you're improving so quickly with the treatment and I hope you continue your progress.    I apologize not knowing the acronyms used on this site, but I will learn as time goes on.  Pam

  • 346. Re: Hi- New to the group
    MrPat Registered Users
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    My second scan a few weeks ago was good. I go in for another maintenance infusion next week, so all is good on the health front.

    We moved into our new house and we are settling in. I'm officially retired now and my wife will join the geezer (retired) club in a few months. During our move I tried to catch a falling piece of furniture and tore my bicept. It's no longer painful, but I now have what the ortho assistant calls Popeye arm. My attending MD said that my muscle tissue may have been weakened by chemo. I know he's just guessing, but to be on the safe side I will not be catching any falling furniture in the near future.

  • 347. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Pat I'm so glad to hear you are in good health.  Congrats on  retirement  and the new home.  Pulling a muscle must be a bummer when your just getting started with that  retirement lifestyle.

     

    Take care,

    Fran

  • 348. Re: Hi- New to the group
    MrPat Registered Users
    Currently Being Moderated

    Hi Pam:

     

    I thought I'd post a response to your questions while Jim is out enjoying life. I'm sure Jim will chime in with some info specific to your diagnosis. I will give you my take on the "watch and wait" approach.

     

    I discovered my lymphoma because of blood clotting problems. When I was hospitalized for a pulmonary embolism my ND referred me to an Oncologist to investigate the cause of the clotting. After 6 months of tests, my Onc confirmed that I have lymphoma. My bone marrow biopsy was positive and I had one abdominal node that was enlarged. We decided to take the watch and wait approach since I had no issues affecting my "quality of life. If this dang illness was curable I would have opted for treatment immediately. Since treatment, in my case, would only buy me temporary remission, I put off chemo for about two years. Guess what we do after chemo. Yep, we go back to watch and wait again.

     

    Talk with your Onc to determine if your lymphoma can be "cured". If there is a good chance for a permanent "cure" feel free to push to start chemo. These decisions are very personal. You should decide based on your own circumstances and follow your heart. I am more of a "if it ain't broke don't fix it" kind of a person. If I had more need to take control I might have switched Oncs and gone for chemo right away.

     

    So take a deep breath and try to find peace. This is a long process. After you are over the shock of the diagnosis try to nurture a positive attitude. Do this and you will be rewarded with a new perspective. You will love your friends and family even more. You will savor every day, even the boring ones.

  • 349. Re: Hi- New to the group
    kgirl Registered Users
    Currently Being Moderated

    Good morning Pam, sorry to see you here but glad you posted.  It may be a guy/girl thing, this watch and wait.  For me, once there was no doubt as to the diagnosis, it was full speed ahead with anything/everything I could throw at the Lymphoma which had decided to make my spine it's home.  To be fair, I really didn't have an active choice inasmuch as I was finally correctly diagnosed late and after the tumor began throwing mets.  I knew something was terribly wrong, accepted the original diagnosis of Sciatica out of trust for the medical profession.  Again, to be fair, NHL is often found late due to some medical issue(s) never suspected by us to be related, no thought given to cancer. We may have carried it around for years without suspecting a thing.

     

    There is hope, there is always hope, many protocols to help rid your body of the original offender and more to keep it at bay.  While some forms of NHL are considered "incurable", it  is also one of many serious illnesses that can be managed, and every day that passes is a day closer to when this disease will also fall by the wayside through R&D. 

     

    Just a suggestion, you may want to talk with your doctor about the "whys" of the watch and wait.  I know when I first started this journey, I would just sit in my doctors office, nod eyes huge, shock bigger than huge.  I have since learned to ask, ask, ask, explain it to me in language I'll understand.  When you are fully armed with all that pertains to you, you have a better chance of forming your own knowledge base which may help with future decisions.

     

    Mr. Pat is so right.  We are all on watch and wait, those just diagnosed, in therapy, or remission, a truly ugly and unfortunate side effect of this disease.  But we're here and ready, if need be, to fight another day.

     

    Blessings always,

     

    Kgirl

     


     


     

      

  • 350. Re: Hi- New to the group
    kgirl Registered Users
    Currently Being Moderated

    I think somewhere there is a rule that dictates one must stay out from under falling piano's and such......

     

    Congrats on the clean scan, many  more to come!!

     

    Kgirl

  • 351. Re: Hi- New to the group
    MrPat Registered Users
    Currently Being Moderated

    Thanks Fran. I tore the muscle away from the connecting tendons. Unfortunatly they cant sew me back together. It does not feel bad. I just have a funny looking upper arm now. As they say, it's hell getting old.

  • 352. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Pat, I thought these fancy docs with their fancy equipment could sew everything back together!  Shows how little I know.

    Fran

  • 353. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Just a quick update;

     

    Marked a bitter sweet mile-stone, finished one year of Rituxan Maint. as well as one year in remission.  CT Scans are now programmed every 6 months, only lingering effects a little more tired than usual, and oh yes the mouse tail and whiskers are getting smaller .

     

    I also hopeful that our other NHL friends that have struggled with this course far longer than some of us, can finally move into remission and go on to enjoy life to their fullest.

     

    My thoughts are always with them.

     

    Jim

  • 354. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Congratulations Jim on the first year of  remission and may you have many, many more  to celebrate.

     

    Blessings, fran

  • 355. Re: Hi- New to the group
    MrPat Registered Users
    Currently Being Moderated

    Yes, congrats Jim. Keep up the fine work!

  • 356. Re: Hi- New to the group
    Inga Registered Users
    Currently Being Moderated

    Jim, and everyone, I have enjoyed reading all your posts. I am 43, have 2 small boys, and have just been diagnosed with stage 4 follicular and might start bendamustine  and rituxan in a couple months. Have many larger (5cm) tumors in abdomen and smaller ones in groin, armpit, neck, etc., and it is in my bone marrow. Symptoms have been minor so far, mostly digestion issues/belly pain and fatigue. Had one looong bout of bilateral pneumonia too. I'm getting a 2nd opinion on April 16. Best of luck to you, and I will think of your writings and humor as I embark on this adventure. You have a great attitude and are so encouraging.

  • 357. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Hi Inga:

     

    I am so sorry that you had to become a memeber of this group.  Remember that you are not alone,  about 60% of NHL people are diagnosed in stage 4.  My case was/is somewhat similar to yours with the exception that I went through R-CHOP with relatively minor inconveniences to my daily life.

     

    When having to make serious decisions about treatment approaches, I would suggest you always get a second opinion, and one more thing, have a close ans trusting relationship with the treatment team, because it make a huge difference both physical and mental.

     

    One of the most incredible things you will experience is the melting (best way to describe it) of the lymphoma right after the first treatment.  I lost ten pounds of tumor weight in the first two weeks.

     

    Also remember that while the treatment most probably will be effective, and hopefully you will never have it come back, NHL is a chronic disease and it can rear it's ugly head any time.

     

    So the moral here is enjoy life to the fullest, laugh load and often. Look for people that will encourage you to be positive, love your family like there is no tomorrow, Andes did i say laugh, laugh at your self.

     

    Come back often there are many here that have/will open their arms and heart to support and help you out.

     

    Cheers and best

     

    Jim

  • 358. Re: Hi- New to the group
    mcee Registered Users
    Currently Being Moderated

    Hey Jim, I just started my second year with the maintenance rituxan today.   Wow, time flies I guess.

     

    My blood work was perfect, and my onco did not feel any nodes anywhere so still golden I guess.

     

    I find it rather odd though, no mention of any kind of scan.  I guess he has me on the one a year plan, so maybe it will be in August.   Perhaps that way, since we were not scanning every 3-6 months this past year, the insurance co. would be willing to let us do a PET/CT combo, which I think is worthwhile due to the PET part.   Heh, as I found out with the node that showed up last August that only the radiologist thought could have been lymphoma, and had to live with that stress until we did a compromise ultrasound and the node had disappeared.

     

    interesting how this all is done so differently all over the country.  

     

    But feeling good, and am hoping to continue on with my long luxurious dance with NED.

     

    mcee

  • 359. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Mcee:

     

    I am so glad you are doing well, the patch has been long and as I saaid before now feels more like a blurrrrrrr than when going through it all.  I also look forward to calm sailing days, but am very aware that NHL can come back.  But I will live each and every day to the fullest and be blessed that I have one more day to spend with my love ones.

     

    Take care my friend.

     

    Jim

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