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5th round of RCHOP and fatigue!

yesyes2
Posts: 461
Joined: Jul 2009

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

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

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

yesyes2
Posts: 461
Joined: Jul 2009

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

alclmom
Posts: 7
Joined: Jan 2010

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
Posts: 461
Joined: Jul 2009

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
Posts: 461
Joined: Jul 2009

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
Posts: 1
Joined: Jan 2010

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
Posts: 7
Joined: Jan 2010

I have Ana plastic large cell ALK NEGATIVE

yesyes2
Posts: 461
Joined: Jul 2009

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

yesyes2
Posts: 461
Joined: Jul 2009

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

lillyfield
Posts: 8
Joined: Feb 2010

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
Posts: 461
Joined: Jul 2009

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's picture
JoanieP
Posts: 573
Joined: Mar 2010

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

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