The Leukemia & Lymphoma Society - Fighting Blood Cancers
26 Replies Latest reply: Nov 3, 2012 1:03 AM by Teddybear RSS

Hi-New to the group

Grandpa23 Registered Users
Currently Being Moderated

Hi everyone,

 

I'm glad I found this site and just registered. I was diagnosed with DLBC NHL 3B in April, and I just finished my 3rd of 6 chemo

treatments with R CHOP and have many of the side effects expected from the drugs. It started with back pains, and so not thinking it

was serious(I've been relatively healthy all my life) I began going to a chiropractor. When this didn't help and the back aches got

worse along with shortness of breath and very aching legs/knees I went to my PCP who diagnosed the NHL. They also found a DVT in my

right lower leg and I'm on Coumadin which has brought up other problems/contraindications. I'm trying to remain positive but must

admit I am shocked, scared and confused. I hope that participating in this forum will help. Any suggestions or words of encouragement
to help ease my mind?


Steve

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

    Steve:

     

    Sorry you had to become a life member of this growing group, but welcome and make yourself at home.

     

    Many of us have walked the road you are traveling on and will be here to help and support you as best as we can.

     

    Best advise I can give you is read.. Read and read more to become familiar with NHL, also remember this is a chronic issue that in many circumstances is very controllable giving people a full complete life.   Also maintain a positive attitude and find things to bring you joy and laughter, it will make the medicine/life go by easier.

     

    Each of us react differently to treatments, but most treatments are doable and soon they will be part of the past and seem like a blurrrrrrrr.

     

    Come back often and we will be here.

     

    Best

     

    Jim

    • Re: Hi-New to the group
      Grandpa23 Registered Users
      Currently Being Moderated

      Hi Jim,

       

      Thanks for welcoming me to the group, one I'd rather not belong too but slowly accepting the fact that I do. Also, you have given me great

      advice and I will read, read and read more along with trying to have a positive attitude. Also, I will continue to participate in this group.

       

      Thanks again Jim as you helped make today a better day!

       

      Steve

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

        Hi Steve, welcome to the group.  Like Jim says it's all doable.  I wanted to pass along a website that is very informative.  I  found out a lot of lymphoma in those pages.  http://www.nhlcyberfamily.org/index.htm

         

        I first had fNHL (R-CVP x 4) then 3 months after treatment for that I was diagnosed with DLBC and just finished chemo (R-CHOP) and radiation last Thanksgiving. 

         

        Hope you do well with treatments and these great people are full of info and give support in abundance. 

         

        Take care, Fran

        • Re: Hi-New to the group
          Grandpa23 Registered Users
          Currently Being Moderated

          Hi Fran,

           

          Thanks you also for welcoming me to the group and thanks for the link. I'm sorry to hear that you were diagnosed with DLBC after

          treatment for fNHL. How are you doing now? I hope you're doing well. I will be going in for my 4th round of chemo of 6 on June 25.

          I'm also getting R-CHOP.

           

          Steve

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

            I'm doing fine Steve.  Exhaustion is still an issue but it is so  much better than in 2011.  I have been in remission for 7 months now and so grateful.  Good luck with  your future treatments. 

             

            Fran

            • Re: Hi-New to the group
              Grandpa23 Registered Users
              Currently Being Moderated

              Fran, first congratulations on your remission. I have exhaustion/fatigue now and I'm glad yours is much better than in 2011 as it is a bummer, but I'm working on having a positive attitude about the whole thing.

               

              Steve

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

                All the pros say the attitude is so important.  I worked at trying to do as many normal things as possible.  I must confess that I had some  really rotten whiny days and I had one or two friends that I could release that tension with and it would disappear quickly.  Take care

  • Re: Hi-New to the group
    Sbega Registered Users
    Currently Being Moderated

    Hi Steve,

     

    I am also new to the group as of today.

     

    I was diagnosed February 24 with NHL after doctoring with my PCP since early January. My first symptom lumps in my lower skull that the nurse upon phone conversation brushed off as infected hair follicle.  Beginning of february when. I had excruciating side pain, I too started with chiropractor.  After two weeks when I realized wasn't helping found out was very enlarged spleen.  I got one treatment in pa., but the rest getting at Mayo clinic in Minnessota.

     

    Mine is stage 4 and I have had 4 out of 6 treatments (R-CHOP).  I also had 40 percent bone marrow and a lot in spinal fluid that we are working to resolve now.

     

    Susan

    • Re: Hi-New to the group
      Grandpa23 Registered Users
      Currently Being Moderated

      Hi Susan,

       

      Welcome to the group. Your case sounds very similar to mine. I was figuring(naively of course)I'd go for some chiropractic sessions
      and everything would be alright. Finally when the pain got so bad I went to get an MRI and that's when the NHL was found in the stomach, pelvic area. I'm going for treatment 4 out of 6 on June 25 and the oncologist said that he would make an appointment after that for a PET scan to see how things are going and I'm anxious about that.

       

      Did you go for a PET scan after treatment 4 or if not were you told that you will be going for one?

      I wish you well in getting to remission!

       

      Steve

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

        Good afternoon Steve:

         

        I have not been on the board for months, but I came back today to see if any of my "chemo-mates" were still doing well (BTW...Hi gang).

         

        I thought I jump in here and add a note of encouragement to your thread. I too had F-NHL and did chemo (R-CVP). This was not as bad as CHOP, but it did the trick. I've been on maintenance infusions (7 so far) and I've remained in remission. There are a lot of us who have made it to remission, so the light at the end of your tunnel is real. Keep a positive attitude. You will get there!

        • Re: Hi-New to the group
          Grandpa23 Registered Users
          Currently Being Moderated

          Hi MrPat,

           

          First I want to say congratulations on your remission. Then I want to say thank you so much for your encouragement as you give me

          inspiration to remain positive as I look forward to remission.

           

          Steve

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

          Greetings --  (and Hi Pat, glad to see all is well with you!)

           

          I had RCHOP for DLBC and am now a bit over half-way through a two-year course of rituxan.

           

          So Grandpa you have just had round 4 of RCHOP, and if it is anything like I had, it was not so bad, just the same general response.   I found I got more tired after the fifth and sixth treatment.  So just keep an eye on the chemo symptoms and keep your doc in the loop if things get wonky.

           

          but is is doable, and all in all, as crummy as I felt before I started RCHOP, I had to admit, even with the fatigue and coordination problems, the odd adventures on prednisone and the chemobrain, I felt better physically overall.  kinda odd, but that's the way it was.   Of course, I was probably more messed up than I realized (I am now seeing some of the work I did while in treatment and ouch, I was a bit more goofed up than I realized).

           

          I also had a scan after my third RCHOP, but for the life of me I cannot remember if it was PET or just CT.  I only recall two trips to the PET truck (a mobile unit comes to town a couple times a month), so it probably was a CT.  It showed I was clear of disease.  RCHOP is very powerful. 

           

          So, keep the good attitude, realize this is doable, and really truly, it all is a blurr after you are done with it.  Eat well, rest when you need to, and laugh as much as you can.    Jim and the others are right, attitude matters.

           

          Be blessed,

           

          mcee

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

            I just had to jump on here and send out a BIG hello to you mcee, Pat and Jim.   You all were my lifeline to sanity.  xoFran

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

              Reporting back..... I'am traveling and doing well after having had a allergic reaction to Rituxan.  I will be back home next week to evaluate if I will have further maintenance treatments.  Nonetheless I am doing great and enjoying life.  I hope all of you are doing well.

               

              Jim

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

                Jim, I'm glad your traveling and feeling good.   What type of reaction did you have, if I may ask?  I didn't get maintenance after the DLBC appeared and was treated. 

                 

                Fran

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

                  Fran:

                   

                  The.reaction was some what Pemphigoid in nature, not severe but the skin rash affected arms and legs and might have been caused by Rituxan treatment.  The dermatologist/oncologist as MD Anderson thinks I might be able to continue treatment if a dose of prednisone is used before the administration of Rituxan.  But the last one to give the ya or nay will have to be the oncologist. 

                   

                  In the mean time I should be heading back home tomorrow and to MD Anderson on Tuesday.  What a way to end a great vacation in the west coast from California to Nevada and ending in Idaho culminating in petting and being licked by wolves.. That will be a story for another time.

                   

                  Best to all

                   

                  Jim.

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

                    Of course I had to look up but it doesn't sound pleasant. 

                     

                    My hubby, as he ages is developing all kinds of reactions to a variety of skin issues.  He is a diabetic and his latest allergies: no tape of any kind, no antibacterial creams,, no non stick guaze pads, not even aquaphor or natural products like aloe gels.  He breaks out in very painful blisters where ever these products touch his skin.  He just had more squamous cell cancers removed, he has something cut out every year or so that usually involve stitches and in some cases plastic surgery.  I hope your condition wasn't very painful.

                     

                    We took a 30  day trip all up the East Coast in July.  I hope your trip went great.

                     

                    Fran

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

                      Fran:

                       

                      I am doing just fine,I did not have a major problem, just skin irritation, but it was enough of a concern to the oncologist that I might have had to be hospitalized if his worst fears had seen the light of day.

                       

                      Nonetheless I can only look forward and move on.

                       

                      Wish your husband the best, and I am glad you both had a great trio.

                       

                      Jim

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

                    Hi Jim, Hi Fran, Hi Pat, Hi all!

                     

                    I am off for another round of Rituxan tomorrow.  two hours at work then I go the couple of blocks to the center, and then I will take the rest of the day off.

                     

                    I just wish I could stay calm.  This every 2 months routine, with excellent perfect bloodwork each time, yet each time I start with the anxiety....and all the what ifs....gee whiz I must like to torture myself.   (I will blame the generalized anxiety disorder..haha, fooey).

                     

                    Anyway, depending on how hard the benedryl hits me I'll maybe post tomorrow.  All will be good. 

                     

                    Gee whiz, both you (Jim) and Fran got to travel this summer.  I took a couple days off for my birthday and was gifted with a major brake job so no big travels for me (plus I use vacation days rather than sick leave days when I can)....but I do plan a trip to see my kid in a couple of weeks.  just a 2-day trip, and a long drive there and back (rental car).  It will be nice to get out of town, I would think my still lingering chemobrain won't be a hindrance.  I did the trip last summer and I was in much worse shape and didn't like the sensation of moving fast.

                     

                    so anyway I'm rambling, but I'm also so glad that all is good.  

                     

                    mcee

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

                      Boy this must all seem like the never ending story.  I know Jim did R maintenance too.  After my first treatment for fNHL the onc said I would get  that maintenance but after the DLBC he didn't say anything.  I think when I go back to see him I will ask about that.  I want this crap to stay gone as long as possible. 

                       

                      I am glad you will be getting to see your young'un.   I think of  you all the time and our classmates from that time.  I find myself backing off the computer some days.  I just want to stop thinking of cancer for a few days at a time. 

                       

                      Love ya, fran

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

                        Hey Fran, yep I agree there are times when the last thing on my mind is lymphoma, but I guess that's why I hit the anxiety ramp big time right before the infusion.

                         

                        Rituxan infusions have been really benign for me, more like an afternoon off in the lounge chair, get to yak with the nurses who were so kind and careful when I was in full chemo.  They are super women, all of them.  That part I like, plus, haha....the hospital has the very best sauted stringbeans and onions on the menu on Fridays.  Sounds silly but even the nurse who tended me a lot over time agrees, those beans are magnificent.   Surely not a reason to go get an infusion, but they are something to look forward to, simply done but I cannot replicate it at home for some reason.

                         

                        My blood work was excellent again, got some lowdown from the doctor about some recent studies on chemobrain (posted them elsewhere on this board), and now I have even more exercise to do it seems.   Is ok, I'll do just about anything to get my brain firing on all cylinders again.

                         

                        Next stop is end of November.  Which places my last R maintenance end of January or so.  Wow, time flies.  I'll save the anxiety for then.  

                         

                        mcee

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

                          Hi everyone. I feel like I fell off the face of the earth for a few weeks.  For some unknown reason I have been fighting depression lately.  I can't put my finger on what it is but I know I am also having fatigue that some  days just wipes me out.  I was doing so good with the energy level that this crud just hit me hard.   I don't  have another scan until Feb so it isn't scaniety either. 

                           

                          I hope all of you are up and running like deer!   Take care everyone.

                           

                          Fran

                          • Re: Hi-New to the group
                            Gorgumplatz Registered Users
                            Currently Being Moderated

                            Fran,

                             

                            Sorry to hear that you are struggling with depression. I can relate to what you are going through. While I amd determined to cultivate a positive attitude during this struggle with DLBCL, I have tough moments of doubt and aprehension. A new pain in the area of my spleen has me a bit concerned and what is in store for me next. Sharing with friends like you on this forum gives me a much needed boost. Over the few months I have been following this forum, I have alway looked forward to reading your comments and following your progress. Please hang in there for us!

                             

                            Hugs  and wishes of wellness to you.

                             

                            Donald

                          • Re: Hi-New to the group
                            Teddybear Registered Users
                            Currently Being Moderated

                            Fran,  Super Big Cyber Hugs!  I wish they could be real.  Nancy

                          • Re: Hi-New to the group
                            Teddybear Registered Users
                            Currently Being Moderated

                            Hey Fran, you doing OK?  Thinking of you Nancy

  • Re: Hi-New to the group
    DBRE Registered Users
    Currently Being Moderated

    Steve, I hope that you find some comfort in the group here. They have really helped me through some random questions and extreme anxiety. It takes all types. And we all have something we can offer each other. I am so sorry for all the complications you are having. I hope they get better with a little bit of time...mine did. Take care of yourself and give yourself lots of credit, Delaney

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