The Leukemia & Lymphoma Society - Fighting Blood Cancers
14 Replies Latest reply: Jun 29, 2012 11:05 PM by FRAN641 RSS

anougher newbie

macnanna Registered Users
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Hi my name is julie,

                                       I was dxd with pv jak 2 pos in 2011 and last week was dxd with nhl after getting a ct scan and having a pet scan, it showed numerous hot spots in chest region and etc, this is a huge shock to me as its all happening so quick. Any advice on what to expect would be grt, i have to have a biopsy next week and then see the spec 5 days after it, so he can see what grade and stage i;m at, then will start chemo. Dont know what sort or how long they do it for, I;ve only just started to get my head around the pv issues, thanks julie

  • Re: anougher newbie
    FRAN641 Registered Users
    Currently Being Moderated

    Julie, I am so sorry you have joined this club that nobody wishes they were in.   I don't know what pv jak 2 pos is.  I  was diagnosed with fNHL in 2010  then after a 3 month remission I was surprised to have DLBC in 2011.  The first chemo I had was R-CVP x 4.  The second round was R-CHOP x 4 and 20 or 25 radiations (I can't remember exactly right now.)  This is not a fun ride but it is all doable.  I hope you have a good support system to help you through the treatments. 

     

    Hope all goes well with your onc visit.  Take care, Fran

    • Re: anougher newbie
      macnanna Registered Users
      Currently Being Moderated

      Hi Fran641,

                         yes its  a huge shock, pv is polcythemia vera ruba, anougher form of a blood cancer. So there worried as now i have non hogkins lyphoma as well, will no whats what in 2 weeks. How long are the chemo cycles? I have very good friends on the lls site in the mpn site, i live in albany western australia.I become a grandmother in late august so thats my focus. have;nt told my children yet, see what the biopsy says. thank you for your kind words ,take care julie

      • Re: anougher newbie
        FRAN641 Registered Users
        Currently Being Moderated

        Julie, my sessions were on a 3 week cycle.  The day of chemo it is about 5-8 hours on  the first one because they had to slow down the R to kick up the benedryl I had a small reaction to the R.  But every 3 weeks, 21 days, I would head back to the hospital for the next one. I never had to stay overnight during chemo.  Most of my days were about 5 - 6 hours.  Take a laptop or books and a friend to keep you company. The website I am sending you is a wonderful resource for information about NHL in it's many forms. 

        Take care and we will hang in there with you...............xo Fran

        http://www.nhlcyberfamily.org/index.htm

        • Re: anougher newbie
          macnanna Registered Users
          Currently Being Moderated

          hi Fran,

                     thankyou for that info and site, i hope this needle biopsy works tom or i have to travel 540km to the big hosp and go into theatre to have one biopsied in my chest;; did you have some one home with you during treatment? Hope you ok now julie ox

          • Re: anougher newbie
            FRAN641 Registered Users
            Currently Being Moderated

            Julie, my daughter stayed with me on my chemo days.  Mostly because I live an hour away from the hospital.  My husband took great care of me all during treatment.  I must admit I loved being relieved of the cooking. He is a much better cook than I am.   Usually I felt like I had the flu for about 10 days then 11 days later time for another round.  I feel fine now just fighting the exhaustion still.  I have 3 low energy  days and then a few high energy days.  Life is good and I am praying your journey through all this goes well. 

            Take care

            • Re: anougher newbie
              macnanna Registered Users
              Currently Being Moderated

              Hi Fran,

                           Once again thankyou for thr info, yes we live a hr away from the hosp as well, my husband will be leaving his job or cutting his hrs back to care for me. I suffer exhaustion and bone pain. Bit of both diseases i would think. Take care jules

              • Re: anougher newbie
                MrPat Registered Users
                Currently Being Moderated

                Good luck with the biopsy. I had a CT guided needle biopsy that confirmed my NHL. I'm not sure what chemo they will prescribe, but Chemo was OK for most of us and there are many of us that have made it to remission.

                • Re: anougher newbie
                  macnanna Registered Users
                  Currently Being Moderated

                  Hi, Yes i had the biopsy yest. They did a ct guided needle biopsy and it was.nt too bad. Thank you for that advice kind regards julie

  • Re: anougher newbie
    Sbega Registered Users
    Currently Being Moderated

    hi Julie,

     

    I'm recently diagnosed with NHL myself-February.  I live in Pennsylvania, but came out to the famous Mayo clinic in Minnesota and staying with extended family.

     

    My treatment is R-CHOP, but I also have a lot of cancer cells in the spinal fluid.  It is a huge deal to have this diagnosis, and your life may seem like it is consumed with appointments and treatments.  I have not had many side affects from the cancer.  One of the important things to remember is to be optimistic.  Mine is a stage 4, and my doctor tells me they will get me through thins."

     

    Susan

    • Re: anougher newbie
      macnanna Registered Users
      Currently Being Moderated

      Hi Susan,

                     thank you for repling, yes a big shock thats for sure, i have huge trouble with bone pain and tirdness. does'nt help that i have the polycythemia vera ruba as well, they said on my pet scan i look to be a stage 3, trying to find out how long the chemo sessions are and do you stay in hosp? my american friends rave about the mayo clinic and dr mesa, take care julie

      • Re: anougher newbie
        lkbanks Registered Users
        Currently Being Moderated

        Julie,just wanted to check in and see how you are holding up.All of your Blood Buddies are lifting you up in prayers. We will be there for you,please keep in touch.

        May God rain Blessings down on you and your family....LindaK

        • Re: anougher newbie
          macnanna Registered Users
          Currently Being Moderated

          Hi All,

                      firstly i would like to say a big thank you to you all for your support, had my biopsy results yest and after 3 weeks of telling me i had nhl, they said i dont and have anougher rare disease called sarcoidosis and it can run with the pv i have, so you can imagine our shock when told i did;nt have nhl. So i wish you all much health and happiness julie xo

          • Re: anougher newbie
            FRAN641 Registered Users
            Currently Being Moderated

            Julie, so glad you are negative for nhl.  I will google sarcoidosis and poycythemia.  I will keep you in my prayers, have a good day. 

             

            xo Fran

      • Re: anougher newbie
        zazoo Registered Users
        Currently Being Moderated

        hi, there-- I have NHL, follicular. Diagnosed and treated in 2005. I had R-CHOP 6 cycles (3 weeks apart), then 2 years of maintenance Rituxan. That kept me in remission for 7 years. Just relapsed. Looking at options. Interestingly, I was just also diagnosed with poycythemia. They do a phlebotomy, taking 1 unit of blood, due, at least in my case to high hemoglobin and hematocrit. It's not related to the NHL.

        Along with R-CHOP, there is R-CVP, which is like R-CHOP without the hard on your heart drug, doxy-something (might also be called adriamycin, I"m not positive). Another regime the oncologists like these days is Bendamustine and Rituxan.  There are a lot of clinical trials out there, too. THere are choices in treatments these days.  Best to you, definitely, please keep us all posted.

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