ooooh the tired!

merrywinner
merrywinner Member Posts: 626 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello to all. I am currently undergoing R CHOP for my follicular NHL. I have had 2 treatments and am at day 11 of that 2nd cycle. I am due back at Mayo on nov. 17th. I know fatigue is expected but boy I am so weak and feel shaky inside. I have not been able to make it to work the last couple of days. Can any of you share your tired issues with me?

Comments

  • DennisR
    DennisR Member Posts: 148
    #2
    Hi Merry
    I was also very
    Hi Merry
    I was also very tired during the R-CHOP chemo....are they giving you blood tests to measure the levels of WBCs & RBCs (platelets)? Low counts are usually the culprit. I believe I started taking shots to build the WBCs up between treatments just after the 2nd treatment. The shots helped a lot, but also have some side effects, (so..what's new?)
    Keep up the battle...the CHOP does wonders for NHL.
    DennisR
  • merrywinner
    merrywinner Member Posts: 626 Member
    #3
    DennisR said:

    Hi Merry
    I was also very
    Hi Merry
    I was also very tired during the R-CHOP chemo....are they giving you blood tests to measure the levels of WBCs & RBCs (platelets)? Low counts are usually the culprit. I believe I started taking shots to build the WBCs up between treatments just after the 2nd treatment. The shots helped a lot, but also have some side effects, (so..what's new?)
    Keep up the battle...the CHOP does wonders for NHL.
    DennisR

    hello Dennis
    I knew I could count on you. The blood levels during cycle 1 did show the neutrophils dropped way low during week 2 but rebounded fairly quickly. The platlets were not affected. My MD says no neulasta at this point and no bloodwork either. He told me they know what my pattern will be now and to be careful on days 10-14 of each cycle. I feel a little better today and will ask him some more on my next visit. He said the bloodwork just gets everyone nervous and he was most concerned with the platlets. I have much confidence in him. He warned me that I will be tired especially after traetment 5 and6. Sometimes its just so nice to have others that know the many feelings that accompany all of this. Thank you. Oh by no bloodwork I mean in between the treatments at my clinic here at home. They will do their own prior to the treatments. I suspect there may have been some communication problems between my family practice clinic and Mayo Clinic that they were not happy with.
  • jerzpilot
    jerzpilot Member Posts: 39
    #4
    Question
    I am n new member to this site, what is R-CHOP? I hope the best for you Mery and Denise, God bless and take cace.

    Edwin
  • merrywinner
    merrywinner Member Posts: 626 Member
    #5
    jerzpilot said:

    Question
    I am n new member to this site, what is R-CHOP? I hope the best for you Mery and Denise, God bless and take cace.

    Edwin

    R CHOP
    Hello jerz,
    It's hard being new and I can empathize. There is so much to learn but you learn fast. I have follicular non hodgekins lymphoma, grade 1-2, stage 4 indolent b cell. All that and what does it mean! Follicular lymphoma (FNHL) is I think the 2nd most common type and the most common type of the slow growing or indolent kinds. This is what the grade refers to. The stage refers to how widespread it is ie: above the diaphrame, above and below, right side , or left and right etc. My MD said it is not like staging other cancers so not to worry about that, when they make the move to treat it they will get it all one way or another as there are so many treatments available. He refers to it as his arsenal. B cell refers to the cell type that is affected, b cells or t cells. I don't have t cell involvement so don't know too much about that. You may see your stage followed by a letter as mine is stage 4A meaning no symptoms such as night sweats, fever, fatigue etc or the letter B meaning with symptoms. The treatment needed is determined by all of these factors, your MD and you. You will have choices and the MDs will help with that. Find someone that you trust and feel comfortable with, who spends time with you is willing to answer your questions. I feel very confident with my MD and after 15 months feel he is truely acting in my best interest. As to R CHOP that is one of the treatments available to treat this illness. Widely used and has been around awhile so they know what to expect. It's an acronym for the drugs being used R being rituxin, C cytoxin etc. I currently have had 2 treatments and will go back for my 3rd on 11/17. There are side effects but all in all most people tolerate it well. There are things they do to help with the side effects and the treatment doesn't last forever. I will have a total of 6 treatments ending in mid Jan. After that he is considering immuno therapy to extend or lengthen the response. I don't know what that all involves yet. I hope all of this helps in some small way and wish you well. Mary
  • winthefight
    winthefight Member Posts: 162
    #6
    jerzpilot said:

    Question
    I am n new member to this site, what is R-CHOP? I hope the best for you Mery and Denise, God bless and take cace.

    Edwin

    R-Chop
    Hi,

    R-Chop Or Chop-R is a combination of chemos given to primarily NH lymphoma patients. The R (Rituxin) is given in an I-V form. Towards the end of the treatment, a nurse comes in to slowly push (aka the push) the other chemos into the IV.

    When I was given the "push" I was given ice chips (some cancer patients had Italian ice to suck on to prevent ulcers from forming on the tongue and throat.

    It worked for me....here I am two years later enjoying life.

    Continue to be blessed. (what are you flying?)
  • jerzpilot
    jerzpilot Member Posts: 39
    #7
    merrywinner said:

    R CHOP
    Hello jerz,
    It's hard being new and I can empathize. There is so much to learn but you learn fast. I have follicular non hodgekins lymphoma, grade 1-2, stage 4 indolent b cell. All that and what does it mean! Follicular lymphoma (FNHL) is I think the 2nd most common type and the most common type of the slow growing or indolent kinds. This is what the grade refers to. The stage refers to how widespread it is ie: above the diaphrame, above and below, right side , or left and right etc. My MD said it is not like staging other cancers so not to worry about that, when they make the move to treat it they will get it all one way or another as there are so many treatments available. He refers to it as his arsenal. B cell refers to the cell type that is affected, b cells or t cells. I don't have t cell involvement so don't know too much about that. You may see your stage followed by a letter as mine is stage 4A meaning no symptoms such as night sweats, fever, fatigue etc or the letter B meaning with symptoms. The treatment needed is determined by all of these factors, your MD and you. You will have choices and the MDs will help with that. Find someone that you trust and feel comfortable with, who spends time with you is willing to answer your questions. I feel very confident with my MD and after 15 months feel he is truely acting in my best interest. As to R CHOP that is one of the treatments available to treat this illness. Widely used and has been around awhile so they know what to expect. It's an acronym for the drugs being used R being rituxin, C cytoxin etc. I currently have had 2 treatments and will go back for my 3rd on 11/17. There are side effects but all in all most people tolerate it well. There are things they do to help with the side effects and the treatment doesn't last forever. I will have a total of 6 treatments ending in mid Jan. After that he is considering immuno therapy to extend or lengthen the response. I don't know what that all involves yet. I hope all of this helps in some small way and wish you well. Mary

    Thanks
    Thanks merry for taking your time and explaining it to me; I was diagnosed with
    indolent non-Hodgkin's follicular lymphoma grade 2 of the B cell type disorder having BS.
    Everyday I am learning more and more about this silent disease and can't wait until the 24th of this month that I will have a second opinion in NYC. they are also going to do a second biopsy from the left over samples. As for now I am starting to have pains in my neck, chest, stomach, groin and weird but my left heel bone have been hurting every other day, mostly all day long. The oncologist that I saw here in Atlanta recomemded 6 months of chemo+R than 2 years of R and once in remission a stem cell transplant. I have read about the side effect of R and I am not looking forward to it but cant wait to start the therapy.
    Hello winthefight; I was flying Cessnas 401's and 402's out of Austin, flying cargo in an all single pilot IFR. God I miss my job. I am unable to work now until after the chemo and the doctor allows me to go back to work. Hopefully this time goes by quick, if I am able to work during chemo in something that (whatever that would be) doesn't put my health at risk, I would do it. I just hate laying in a bed or staying at home not doing anything. Well thank you both for taking the time and answering some of my questions; God bless.

    Edwin
  • malkd
    malkd Member Posts: 3
    #8
    Gee, guess I'm two months late in responding. Just joined this network though.
    I'm also on the cycles -- total of four. Mine is 5 days as inpatient and then 16 at home.
    I'm at Unv. of Colo. medical campus-new cancer center.

    Just finished cycle #2 which was supposed to be "Chemo Lite" but felt so ill for the next day and half. Couldn't eat. Now I'm bouncing back. I've been reading up on supplementing all the countless medications with vitamins. Have you looked into this?

    Work? did you say work? I can drag myself in for maybe 4 hours every now and then.

    Diane
  • merrywinner
    merrywinner Member Posts: 626 Member
    #9
    malkd said:

    Gee, guess I'm two months late in responding. Just joined this network though.
    I'm also on the cycles -- total of four. Mine is 5 days as inpatient and then 16 at home.
    I'm at Unv. of Colo. medical campus-new cancer center.

    Just finished cycle #2 which was supposed to be "Chemo Lite" but felt so ill for the next day and half. Couldn't eat. Now I'm bouncing back. I've been reading up on supplementing all the countless medications with vitamins. Have you looked into this?

    Work? did you say work? I can drag myself in for maybe 4 hours every now and then.

    Diane

    lol enjoyed your response
    Welcome Diane,
    Thank you for your reply and for making me laugh! I hope all is going well for you. What sort of Lymphoma do you have? I have folliclar, grade 1-2 stage 4A. I'm currently receiving R CHOP and will have my 5th treatment out of 6 tomorrow at the Mayo Clinic in Rochester, Mn. I was fortunate to go into remission after treatment #2 and hope and pray it lasts. I will start maintainance Rituxin every 3 months after that. The tired continues but I try to get to work when my legs will hold me up. I find not surprisingly that I am much more tired when I work. I'm a nurse and usually have about 20 patients. I have missed alot though, enough so that I've burned through all of my sick days and vacation and still have 2 cycles to go. But such is life and if I can stay in remission it will have been worth it. My MD has warned me that #'s 5 and 6 will make me really tired! I can hardly imagine it!! I do have good days too but getting close to the end I can feel the toll it has taken. I think alot of it is just the process itself, the worry, the Prednisone that doesn't allow me to sleep for the first 5 days of each cycle, the whole package. I should however mention how thankful I am that there are treatments, that I have insurance,and a great family plus I really am happy with my MD. It was good to vent though. Let me know how you are doing and feel free to vent too.
    Mary

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