Short note

Chris17
Chris17 Member Posts: 175
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Been awhile since i posted,had chemo again for the 3rd time since first dx 2008. had Treanda and Rituxan, one time a month 2 day session for 6 months, and it really kicked my butt. I didnt do the stem cell, told my Doc i wasnt ready for that, had labs done and it is showing my white cells are dropping little by little, fevers are back too like before, I had a CAT scan which says they cant see any tumors so my Doc did lab cultures to look for bacteria, came back negative, put me on antibiotics, no change on the way i feel, Doc said she will call me next week and we can decide whats next,i want a PET scan, that scan shows any activity that the CAT scan doesnt see. I am so tired, seems to always be something, will try and keep up with the posting.

 

                  Chris

Comments

  • lindary
    lindary Member Posts: 711 Member
    #2
    Tired

    Sorry to hear about your situation. I don't blame you for wanting a PET scan to see if the cancer is gone. I hope there is no sign of it.

    Totally understand the feeling that "there always seems to be something". I had my last chemo (RICE) the first weekend of Oct. By the holidays I was feeling better and then afterwards felt tired again. Thought the blood counts may have dropped. Had an appt with my primary dr who had ordered a TSH (thyroid) test. Turns out my TSH was high again. She thinks it might be the results of drinking so much water (tap) last year. Seems flouride can cause higher TSH readings. 

    Good luck. 

  • Unknown
    Unknown
    #3
    Rooting for you!

    hang in there Chris. Your fortitude is inspiring to the rest of us. 

  • illead
    illead Member Posts: 884 Member
    #4
    unknown said:

    Rooting for you!

    hang in there Chris. Your fortitude is inspiring to the rest of us. 

    Hi Chris

    I totally agree with GKH, you are really inspiring.  I always think you about and glad you posted. I know how hard this fight must be, it looks like your boyfriend is still a great support for you, I'm happy about that.  Wish so much this battle weren't as ongoing for you as it is.  Sorry the Treanda was so difficult but at least one bright spot is, you get to keep your hair.  We are always here for you and and thank you for updating us.

    Keep fighting,

    Becky

  • OO7
    OO7 Member Posts: 281
    #5
    Indeed

    You're a warrior.  Undoubtably you must be dizzy from being on the lymphoma Merry go round.  I can only imagine your exhaustion but Wow what a fighter you are, give it HELL!

    You are an inspiration and in awe.  You are in my thoughts and prayers!!!

    Good Luck!

     

  • Chris17
    Chris17 Member Posts: 175
    #6
    Thank you for the kind words,

    Thank you for the kind words, im gonna keep on going with what ever lays ahead for me, will try to post more often, again thank you all it means a lot.

                             Chris

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #7
    Chris17 said:

    Thank you for the kind words,

    Thank you for the kind words, im gonna keep on going with what ever lays ahead for me, will try to post more often, again thank you all it means a lot.

                             Chris

    Superwoman

    Chris,

    I have mentioned this to you in the past I believe, but let me say again that you are among the most amazing cases ever at this Board.  Certainly in the top ten.

    Keep it going,

    max

  • Jeff148
    Jeff148 Member Posts: 184
    #8
    You inspire!!

    Chris,

    I've been off for a bit. Just wanted to let you know I'm still thinking about you and you are still on my prayer list. One great song that I listened to when I was down during my battle was "It's Not Over Yet" by King and Country. The lyrics helped me keep going. I still need that song in other aspects of my life, but for now I am doing well. I hit my 50th three Thursdays ago and decided to do something on my bucket list, snowboard and surf on the same day. I never imagined that I would be able to do somehting like that two years ago when I was sick. I woke up before light and snowshoed up a ski slope and then boarded down, then drove to a lake where I had a boat waiting and caught my birthday smallmouth bass, then went to spin class because they celebrate your b-day with your choice of music, then hit the coast for two hours of great surf. My friends that were with me saw that I had skipped the mile swim I had on my list, forced me back to the club for the swim. Then it was time for a long winters nap. So....the moral of the story is that you have great things ahead of you. You are a strong amazing warrior. It's the stories on this site that keep me inspiring to go big when my body and God allows me to.

  • Chris17
    Chris17 Member Posts: 175
    #9
    Jeff148 said:

    You inspire!!

    Chris,

    I've been off for a bit. Just wanted to let you know I'm still thinking about you and you are still on my prayer list. One great song that I listened to when I was down during my battle was "It's Not Over Yet" by King and Country. The lyrics helped me keep going. I still need that song in other aspects of my life, but for now I am doing well. I hit my 50th three Thursdays ago and decided to do something on my bucket list, snowboard and surf on the same day. I never imagined that I would be able to do somehting like that two years ago when I was sick. I woke up before light and snowshoed up a ski slope and then boarded down, then drove to a lake where I had a boat waiting and caught my birthday smallmouth bass, then went to spin class because they celebrate your b-day with your choice of music, then hit the coast for two hours of great surf. My friends that were with me saw that I had skipped the mile swim I had on my list, forced me back to the club for the swim. Then it was time for a long winters nap. So....the moral of the story is that you have great things ahead of you. You are a strong amazing warrior. It's the stories on this site that keep me inspiring to go big when my body and God allows me to.

    Thanks

    Hi Jeff,

    You are amazing, to be able to do all that and in 1 day no less! Happy belated birthday! i will be 49 tomorrow, and i am glad to see another birthday, thanks for the kind words, for me the spirit is willing but the body is pooped, but i will keep on going where ever this chapter in my life takes me. Will keep in touch more often, again thank you!

     

                                       Chris

  • MarkPs35
    MarkPs35 Member Posts: 7
    #10
    Jeff148 said:

    You inspire!!

    Chris,

    I've been off for a bit. Just wanted to let you know I'm still thinking about you and you are still on my prayer list. One great song that I listened to when I was down during my battle was "It's Not Over Yet" by King and Country. The lyrics helped me keep going. I still need that song in other aspects of my life, but for now I am doing well. I hit my 50th three Thursdays ago and decided to do something on my bucket list, snowboard and surf on the same day. I never imagined that I would be able to do somehting like that two years ago when I was sick. I woke up before light and snowshoed up a ski slope and then boarded down, then drove to a lake where I had a boat waiting and caught my birthday smallmouth bass, then went to spin class because they celebrate your b-day with your choice of music, then hit the coast for two hours of great surf. My friends that were with me saw that I had skipped the mile swim I had on my list, forced me back to the club for the swim. Then it was time for a long winters nap. So....the moral of the story is that you have great things ahead of you. You are a strong amazing warrior. It's the stories on this site that keep me inspiring to go big when my body and God allows me to.

    Thanks Chris!

    Your bucket list story is great.  Thanks for that.  I'm 51 and just diagnosed with Follicular, stage 4, grade 3 a few weeks ago but I think I've had this stuff for a while becuase I just havent had the entergy to attack a bucket list for the last several years.  Never could figure out what was going on.  Like Chris said, my spirit is willing but my body is pooped right now! I'm glad to hear I'll be up for it next year! Thanks man.

    Mark

  • MarkPs35
    MarkPs35 Member Posts: 7
    #11
    Jeff148 said:

    You inspire!!

    Chris,

    I've been off for a bit. Just wanted to let you know I'm still thinking about you and you are still on my prayer list. One great song that I listened to when I was down during my battle was "It's Not Over Yet" by King and Country. The lyrics helped me keep going. I still need that song in other aspects of my life, but for now I am doing well. I hit my 50th three Thursdays ago and decided to do something on my bucket list, snowboard and surf on the same day. I never imagined that I would be able to do somehting like that two years ago when I was sick. I woke up before light and snowshoed up a ski slope and then boarded down, then drove to a lake where I had a boat waiting and caught my birthday smallmouth bass, then went to spin class because they celebrate your b-day with your choice of music, then hit the coast for two hours of great surf. My friends that were with me saw that I had skipped the mile swim I had on my list, forced me back to the club for the swim. Then it was time for a long winters nap. So....the moral of the story is that you have great things ahead of you. You are a strong amazing warrior. It's the stories on this site that keep me inspiring to go big when my body and God allows me to.

    Thanks Chris!

    Your bucket list story is great.  Thanks for that.  I'm 51 and just diagnosed with Follicular, stage 4, grade 3 a few weeks ago but I think I've had this stuff for a while becuase I just havent had the entergy to attack a bucket list for the last several years.  Never could figure out what was going on.  Like Chris said, my spirit is willing but my body is pooped right now! I'm glad to hear I'll be up for it next year! Thanks man.

    Mark

  • Jeff148
    Jeff148 Member Posts: 184
    #12
    Chris17 said:

    Thanks

    Hi Jeff,

    You are amazing, to be able to do all that and in 1 day no less! Happy belated birthday! i will be 49 tomorrow, and i am glad to see another birthday, thanks for the kind words, for me the spirit is willing but the body is pooped, but i will keep on going where ever this chapter in my life takes me. Will keep in touch more often, again thank you!

     

                                       Chris

    Happy B-day!!!

    I used to hate getting older. Now I truly celebrate birthdays. Happy 49th!!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #13
    Chris17 said:

    Thanks

    Hi Jeff,

    You are amazing, to be able to do all that and in 1 day no less! Happy belated birthday! i will be 49 tomorrow, and i am glad to see another birthday, thanks for the kind words, for me the spirit is willing but the body is pooped, but i will keep on going where ever this chapter in my life takes me. Will keep in touch more often, again thank you!

     

                                       Chris

    Wonderful

    Chris,

    Happy 49th !  Still a baby !    

    (I learned from my prostate cancer that the average age at diagnosis for prostate is 67 ! Such a different world !)

    May you see your age doubled, or 98 .

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #14
    MarkPs35 said:

    Thanks Chris!

    Your bucket list story is great.  Thanks for that.  I'm 51 and just diagnosed with Follicular, stage 4, grade 3 a few weeks ago but I think I've had this stuff for a while becuase I just havent had the entergy to attack a bucket list for the last several years.  Never could figure out what was going on.  Like Chris said, my spirit is willing but my body is pooped right now! I'm glad to hear I'll be up for it next year! Thanks man.

    Mark

    Similar

    Mark,

    I was about your age at diagnosis, 53.  My disease was very widespread, basically everywhere, from the neck to pelvic region. My doc estimated that I had had the disease a long time, particularly because my strain of HL is extremely indolent (slow-moving, non-aggressive). Many contributors here state that they were told that their indolent disease was many years old, some as long as ten years before beginning treatment.

    Before diagnosis or treatment began, I was so fatigued that when responding to service calls in my car I would at times have to pull on to the shoulder of the highway to cat nap, two hours after waking up from ten hours of sleep !  Guzzling several 16oz cups of coffee did no good toward energizing me at that time. I am sure I was close to total collapse.  I never felt a node anywhere -- still haven't. I have never felt to the touch an enlarged lymph node in my life.  I was only diagnosed because severe chest pain put me in an E.R, and the doctors were sure initially that it was unstable angina. After scans, the real cause was discovered: lymph nodes pressing against the wall of the heart.

    While the aforementioned Prednisone will artifically induce energy and sometimes insomnia, know that fatigue and weakness are hallmarks both of the disease, and essentially all chemo drugs.  If tired, sleep.  Sleep is a healthy thing, I think curative, at least emotionally.  It is viewed as "weakness" in our frantic business world, but that is a false view.   I feel chemo patients need a series of those TurboTax commercials done for them, the ones that show Ivy League professors telling customers which button to push.  It is a Buddhistic sort of truth and insight: If tired, rest. If energetic, get up and do stuff.  No medical journal articles are necessary to figure this out !

    I did twelve infusions of my chemo combination, eight hours each (R-ABVD has no pills, and all five drugs are IV drips, and all given at one sitting).   I was seated when the infusion nurses came in in the morning -- the receptionist got to know me and would let me go back before staff was back there --  as my wife had to drop me off on her way to work, around 7:30 AM, and I was still sitting there finishing up when some began leaving in the afternood, around 4:00 PM.   The infusion center had about 35 chairs, and so I watched a lot of othert patients receiving treatment. 

    Some I dubbed in my own mind "Power Patients":  Always on the laptop, always making "important" phone calls, closing deals, ruling the world.  Real movers and shakers.  I felt more sorry for them than anyone else, knowing that in reality they were so weak that they could not admit weakess; nothing, even chemotherapy, was enough to authorize taking a break for them.  How sad, how uniquely American.   I recall my time in Europe, where some little towns would shut down everything on Wednesday afternoon. The first time I encountered this I asked a shop owner why they were closing at noon on Wednesday. He replied, "Why would we not close ?"  Why indeed.  I do not know their cancers, but I saw two of my Power Patients in the Obits months later. Their hustle was for naught. Maybe they got a big commission ?

    It takes usually at least two infusions for most side-effects to really land (i.e., hair loss), so expect the unexpected, but know that these harsh drugs, in most cases, put patients in C.R. ("Complete Remission"; sometimes also referred to as NED, or "No Evidence of Disease").

    Go through this mess calmly, and full of hope.

    max

  • lindary
    lindary Member Posts: 711 Member
    #15
    MarkPs35 said:

    Thanks Chris!

    Your bucket list story is great.  Thanks for that.  I'm 51 and just diagnosed with Follicular, stage 4, grade 3 a few weeks ago but I think I've had this stuff for a while becuase I just havent had the entergy to attack a bucket list for the last several years.  Never could figure out what was going on.  Like Chris said, my spirit is willing but my body is pooped right now! I'm glad to hear I'll be up for it next year! Thanks man.

    Mark

    pooped out

    Hey Mark,

    I was diagnosed with Follicular lypmphoma, stage 4, Dec 2014. I had been tired for most of the year but I have problems with Iron & thyroid levels. Wrote it off as one of them. My dr ran blood test during the summer and things looked ok. When the thyroid was redone in Dec it was low. Like Max, the cancer was found by looking at another problem. For me I had started having bowel problems in Nov. So are part of the Dec exam she checked my abdomen and found the tumor/enlarged lymph node. Shortly after that the disfunctional lymph system also resulted in pluerisy in the right lung. Because of the multiple problems my oncologist, and the second opinion oncologist, decide to treat it as an agressive form of lymphoma. After a couple of chemo sessions I started feeling so much better. I had 6 sessions of R-chop & 3 sessions of RICE, after which I was declared in remission. I am now lining up for Stem Cell Transplant in a few weeks to keep it at bay longer. 

    My last chemo was early Oct. After about 2 months (almst 1 year after it was found) I felt better than I had for a long time. Right now the only weakness I have is mainly because of the lack of exercise. 

    Max,

    I had to chuckle at your comments about people bringing their work with them to chemo. When I was getting R-chop I took that as a day off from work since it was only 1 day. With the RICE being 3 days (Thur - Sun) in the hospital I did bring my work laptop with me.  Now with the SCT meaning 4 weeks in the hospital there is no question about bringing the work laptop. I just may not be working normal hours.

     

Discussion Boards