5th round of RCHOP and fatigue!

yesyes2
yesyes2 Member Posts: 591
I just completed my 5th of 6 cycles of RCHOP last Monday. I know I'm supposed to experience fatigue but this is way more than normal tiredness. We live in a 2 story house and I can't make it up to the top floor without assistance on my bad days. My legs feel like lead. My Onc thinks it's fatigue, lungs are fine. Echo is fine. And I'm currently in CR for a very rare form of B and T cell NHL.

Has anyone else experienced this type of fatigue and if so what helped you?

Thanks for being there to listen and help.
Leslie

Comments

  • winthefight
    winthefight Member Posts: 162
    Fatigue
    Hi, so sorry that you are going through this. I was dx with Large B cell with T cell enrichment NHL. I had fatigue from the start. After my 4th treatment my fatigue escalated. I stayed in bed to rest....that's what I thought was going to help. When speaking with my physician, he advised me I should exercise ( I know it sounds strange doesn't it?). But it actually did help. He says any type of exercise....walking from the front door to the mail box is good....he even says yoga will help. Any type and any amount of time will help decrease fatigue. I followed his advise and it did work. I paced myself.

    It worked for me...hope this helps.

    Take care
  • alclmom
    alclmom Member Posts: 7
    hi
    Hey I can totally relate!
    I finished my sixth cycle of chop in September. I have 3children under 3and through my first 4cycles i was able to do all types of activities with them ....zoo,museum's, overnight vacations. ..by my fifth I almost suddenly could no make it up the stairs. I remember crying in the middle of my staircase cause I just couldn't make it into my bed. My doctor had almost a sigh of relief when I explained what I was feeling(sounds crazy ) but he told me that was a sure sign the chemo was doing its job. And I will say it did! I'm in full remission ....!!! I had the most rare form of nhl....they do not know a lot about it but hopefully its gone forever although I still face odds of 50% recorrance but I feel GREAT!
  • yesyes2
    yesyes2 Member Posts: 591

    Fatigue
    Hi, so sorry that you are going through this. I was dx with Large B cell with T cell enrichment NHL. I had fatigue from the start. After my 4th treatment my fatigue escalated. I stayed in bed to rest....that's what I thought was going to help. When speaking with my physician, he advised me I should exercise ( I know it sounds strange doesn't it?). But it actually did help. He says any type of exercise....walking from the front door to the mail box is good....he even says yoga will help. Any type and any amount of time will help decrease fatigue. I followed his advise and it did work. I paced myself.

    It worked for me...hope this helps.

    Take care

    Fatigue
    Hi Win, Thanks for the information on exercise. I knew I could count on your experience for suggestions. I know that will help but when the fatigue is really bad about the best I can hope for is a shower. I do feel better if I can walk a little. I am feeling much better this week my rebuild week, and only have one round left to go. Hope that you are continuing to do well.
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    alclmom said:

    hi
    Hey I can totally relate!
    I finished my sixth cycle of chop in September. I have 3children under 3and through my first 4cycles i was able to do all types of activities with them ....zoo,museum's, overnight vacations. ..by my fifth I almost suddenly could no make it up the stairs. I remember crying in the middle of my staircase cause I just couldn't make it into my bed. My doctor had almost a sigh of relief when I explained what I was feeling(sounds crazy ) but he told me that was a sure sign the chemo was doing its job. And I will say it did! I'm in full remission ....!!! I had the most rare form of nhl....they do not know a lot about it but hopefully its gone forever although I still face odds of 50% recorrance but I feel GREAT!

    Hi Alclmom
    HI, I know what you mean as I too cryed because I was so tired and couldn't make it up my stairs to bed. This 5th cycle I was the most fatigued the first week but by the second I felt better than I had any other cycle. Go figure! Well my Onc reduced my Vincristine so maybe that's why. Wonder how cycle 6 will be?
    I can not imagine going through chemo and dealing with 3 very small children. I don't know how you did it. And 3 Cheers for being in full remission!!!! May you stay that way forever.
  • yesyes2
    yesyes2 Member Posts: 591
    alclmom said:

    hi
    Hey I can totally relate!
    I finished my sixth cycle of chop in September. I have 3children under 3and through my first 4cycles i was able to do all types of activities with them ....zoo,museum's, overnight vacations. ..by my fifth I almost suddenly could no make it up the stairs. I remember crying in the middle of my staircase cause I just couldn't make it into my bed. My doctor had almost a sigh of relief when I explained what I was feeling(sounds crazy ) but he told me that was a sure sign the chemo was doing its job. And I will say it did! I'm in full remission ....!!! I had the most rare form of nhl....they do not know a lot about it but hopefully its gone forever although I still face odds of 50% recorrance but I feel GREAT!

    Fatigue and Rare NHL
    Hi Alclmom,
    May I ask what type of NHL you had?? I too have a very rare form of NHL which the Doctors are not too sure how to treat. My chances for recurrance are also about 50% and I have had one recurrance already, while still in treatment, so don't know my percentages now. I have never found another person with my NHL so was wondering what you had.
    Thanks so much for your information.
    Best to you, Leslie
  • mgrace
    mgrace Member Posts: 1
    How's it going?
    To YesYes2: Hi, I'm just completing cycle 6 or 6. (That is, the way I count it--I am in third week of my 6th cycle...so done, sort of; I go for scans next week.) Wondering how you are doing! I got more tired my 5th, and more tired still the 6th. Being in third week--I am tired still (felt stronger after nadir week; but had to get up Early to go for blood work yesterday, a reschedule to avoid today's snow; and I am Knocked Out! glad to know, at least, from yesterday's blood work, that my counts are coming back up).

    I find, reading these threads, that responses start going to people who wrote down the line from the original poster, so just want to see how you're doing. I did quite well throughout the R-CHOP, but did experience this compounding (also the last cycle, Strong zinging pain in one of my feet--I was So glad it was the last cycle)--so holding for your strength and wellbeing--and of course, excellent results.

    Best wishes ~ Grace
  • alclmom
    alclmom Member Posts: 7
    mgrace said:

    How's it going?
    To YesYes2: Hi, I'm just completing cycle 6 or 6. (That is, the way I count it--I am in third week of my 6th cycle...so done, sort of; I go for scans next week.) Wondering how you are doing! I got more tired my 5th, and more tired still the 6th. Being in third week--I am tired still (felt stronger after nadir week; but had to get up Early to go for blood work yesterday, a reschedule to avoid today's snow; and I am Knocked Out! glad to know, at least, from yesterday's blood work, that my counts are coming back up).

    I find, reading these threads, that responses start going to people who wrote down the line from the original poster, so just want to see how you're doing. I did quite well throughout the R-CHOP, but did experience this compounding (also the last cycle, Strong zinging pain in one of my feet--I was So glad it was the last cycle)--so holding for your strength and wellbeing--and of course, excellent results.

    Best wishes ~ Grace

    yesyes
    I have Ana plastic large cell ALK NEGATIVE
  • yesyes2
    yesyes2 Member Posts: 591
    mgrace said:

    How's it going?
    To YesYes2: Hi, I'm just completing cycle 6 or 6. (That is, the way I count it--I am in third week of my 6th cycle...so done, sort of; I go for scans next week.) Wondering how you are doing! I got more tired my 5th, and more tired still the 6th. Being in third week--I am tired still (felt stronger after nadir week; but had to get up Early to go for blood work yesterday, a reschedule to avoid today's snow; and I am Knocked Out! glad to know, at least, from yesterday's blood work, that my counts are coming back up).

    I find, reading these threads, that responses start going to people who wrote down the line from the original poster, so just want to see how you're doing. I did quite well throughout the R-CHOP, but did experience this compounding (also the last cycle, Strong zinging pain in one of my feet--I was So glad it was the last cycle)--so holding for your strength and wellbeing--and of course, excellent results.

    Best wishes ~ Grace

    Hi Grace,
    Thanks for your response and I really want to know how your doing at about 4 weeks out. Have you had your scan yet? I will be sending you good thoughts for a negative result scan. I'm hoping to get a CT at around week 5 to see if I'm still in CR.

    This 5th cycle has been hard but not as difficult as I was afraid it would be. First week was bad, second week pretty good, 3rd week more fatigue. I feel pretty good today with probably enough energy to do a few things. But want to conserve energy as my husband and I are going out to dinner this evening and I want to feel good for it. Tomorrow, Feb.15, I do my 6th and final cycle. My RBC have been dropping and even though they're not that low they are down more than ever before. My PCP thinks I'm having an electrolite problem but my ONC doesn't feel the need for blood work at this time. Guess I should have pushed.
    My ONC did reduce my Vincristine as I'm having some neuropothy and zinging pains in hands and feet. It did make things better last chemo.

    Here's to excellent resutls on your scans. Let me know how your doing.
    Best to you,
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    alclmom said:

    yesyes
    I have Ana plastic large cell ALK NEGATIVE

    Hi Alclmom
    Yes Alclmom, I have heared that your type of NHL is very rare. I have LPD, Immunosuppressed LymphoProliferative Disorder of both T and B cells. Not a really well defined NHL, or very well understood. Same disease as PTLPD, Post Transplant LymphoProliferative Disorder. Tends to respond well to treatment but recur. It is considered an aggressive NHL but because it is caused by an immune system problem, usually caused by taking immunsuppressing drugs, they don't seem to like to use SCT as a treatment. I've had this disease for over 2 years and have never met anyone who has it.

    So here's to us, that we stay well and keep looking forward to the future.
    Best wishes, Leslie
  • lillyfield
    lillyfield Member Posts: 8
    yesyes2 said:

    Hi Grace,
    Thanks for your response and I really want to know how your doing at about 4 weeks out. Have you had your scan yet? I will be sending you good thoughts for a negative result scan. I'm hoping to get a CT at around week 5 to see if I'm still in CR.

    This 5th cycle has been hard but not as difficult as I was afraid it would be. First week was bad, second week pretty good, 3rd week more fatigue. I feel pretty good today with probably enough energy to do a few things. But want to conserve energy as my husband and I are going out to dinner this evening and I want to feel good for it. Tomorrow, Feb.15, I do my 6th and final cycle. My RBC have been dropping and even though they're not that low they are down more than ever before. My PCP thinks I'm having an electrolite problem but my ONC doesn't feel the need for blood work at this time. Guess I should have pushed.
    My ONC did reduce my Vincristine as I'm having some neuropothy and zinging pains in hands and feet. It did make things better last chemo.

    Here's to excellent resutls on your scans. Let me know how your doing.
    Best to you,
    Leslie

    Message for yes yes 2
    Hi Leslie, I did answer your message to me regarding my message on the flu shot and lymphoma. However, I did send it under my site, so perhaps you did not get it. Let me know and I'll send again.

    I don't know about what you are going thru, as it is unfamiliar to me. Sounds like it's very trying for you, however. Hope the end results will be just fine. You are such a caring person, and I thank you for that, as I am sure others feel the same. Good luck and I've put you in my prayers. Lynn
  • yesyes2
    yesyes2 Member Posts: 591

    Message for yes yes 2
    Hi Leslie, I did answer your message to me regarding my message on the flu shot and lymphoma. However, I did send it under my site, so perhaps you did not get it. Let me know and I'll send again.

    I don't know about what you are going thru, as it is unfamiliar to me. Sounds like it's very trying for you, however. Hope the end results will be just fine. You are such a caring person, and I thank you for that, as I am sure others feel the same. Good luck and I've put you in my prayers. Lynn

    Hi Lynn,
    Thanks so much for the kind words, you could make me blush. I finished my last round of chemo on 2/15 and it was a pretty easy chemo this time. Funny how each one is different.
    Now we wait for a repeat scan and hope I'm still in remission.

    Again thanks and the best to you. You are very knid.
    Leslie
  • JoanieP
    JoanieP Member Posts: 573
    me too
    I just realized I answered your post from Feb. I keep trying to edit it. Either this site is wacky tonight or my computer or the operator is nuts
  • gplaumann
    gplaumann Member Posts: 1
    edited December 2017 #14
    After 5 rounds of RChop

    Had my 5th round of RChop on Dec. 20, 2017.  I was in bed from Dec. 24 through Dec. 28.  The fatigue I am experiencing is overwhelming.  I am a strong man and this 5th round has kicked my butt.  But, luckily, today is Dec. 30 and I am feeling a bit stronger and I know this journey is almost over.  Only one treatment left on Jan. 10.  Chemo is cumulative and I know after the last round I will once again feel horribly, but after the low point I will then start to regain my strength little by little, day by day and be cancer free.  Come spring I will feel much better and hope to get back to the gym to build up my muscle mass again and begin working in the yard.  So many spring projects already spinning around in my head.  I will not miss this journey I have been experiencing, especially the 5 days of 100 mg of Prednisone.  I HATE PREDNISONE.  I am so thankful for my family and friends that have helped my through this because, without them, I am not sure if I could have done it myself.  

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    5 rounds

    Hang in there! I finished my 6th round of RCHOP on July 3. Yes rounds 4 and 5 were much rougher than 1-4. However, 5-6 weeks after the last treatment man oh man. I felt like a teenager! Not the 53 year old I am. For about 6 weeks I felt like I was almost in some type of mood enhancer. It was incredible and man did my appetite come back with a vengeance. Took a while to get my muscle strength back and pretty sure it is not as good as it was. Believe me though it is night and day difference. The mood enhancer feeling is gone and now back to a pretty normal life. I was not very patient during the 6 weeks after the last treatment. I will tell you it did not really seem to gradually get better it was like one day somewhere in between week 5 and 6 I just woke up and felt better. So keep up the good attitude. My Dr. told me 6 weeks to feel better and 6 months to get back to normal. He was pretty close. Wishing you the best.

  • Evarista
    Evarista Member Posts: 325 Member
    edited December 2017 #16
    gplaumann said:

    After 5 rounds of RChop

    Had my 5th round of RChop on Dec. 20, 2017.  I was in bed from Dec. 24 through Dec. 28.  The fatigue I am experiencing is overwhelming.  I am a strong man and this 5th round has kicked my butt.  But, luckily, today is Dec. 30 and I am feeling a bit stronger and I know this journey is almost over.  Only one treatment left on Jan. 10.  Chemo is cumulative and I know after the last round I will once again feel horribly, but after the low point I will then start to regain my strength little by little, day by day and be cancer free.  Come spring I will feel much better and hope to get back to the gym to build up my muscle mass again and begin working in the yard.  So many spring projects already spinning around in my head.  I will not miss this journey I have been experiencing, especially the 5 days of 100 mg of Prednisone.  I HATE PREDNISONE.  I am so thankful for my family and friends that have helped my through this because, without them, I am not sure if I could have done it myself.  

    One baby step at a time

    Yes, chemo kicks butt, no question about it.  After each round, it took a little longer to start getting off the couch.  But it does pass with time.  I've taken longer than Sandy to get my strength back, but I'm >20 years older, so that is not surprising.  Take it slow but steady and each day try to do a little more.  If the only thing you are getting up for is to go to the bathroom, pick the furthest one in your house.  Wash dishes (just standing at the sink is exercise!). In my in-between weeks and after round 6, I spent a lot of time doing jigsaw puzzles just because they forced me off the couch, made me sit/stand, sit/stand, and walk around the table. From there, daily short walks outside, increasing distance as you are able. Then the bicycle machine at the gym, and so forth.  Up until a few weeks ago, I described myself as feeling as though I lived in 2x gravity,  It's now 7 months post-chemo and that feeling has finally lifted.  Slow and steady wins this race and your great attitude will help.

    Sandy Ray: been missing you and glad to see that you are well.

  • NJ Bob
    NJ Bob Member Posts: 7
    Radiation after REPOCH

    aI finished chemo in Oct.,17.  I,m 14 sessions of radiation into 20 scheduled.  My throat is sore and swallowing somewhat painful.

    Never got over fatigue and it's worse. (i'm 79)  I'm considering canceling radiation as quality of life not that good, and I read that

    side effects may last indedinitely.  Anyone have this experience?