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hilde451's picture
Posts: 229
Joined: Oct 2009

Hi Everyone:

Has anyone felt such terrible fatigue. I have finished my treatment in December 23, 09 I had 8 rounds of R-Chop and Zevalin.
But every evening I can hardly stay awake starting around 5.
I read Liz's post and I have pain in the muscle at night. It really wakes me up at night from sleep.
I can not seem to lay on either of my sides.
I see my Oncologist March 4th. I will tell them that but I dont think they will listen.
I Hope you all are doing well.

allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Hilde,
I finsihed 6 rounds of CVP-R on Dec 14th and then started my rituxan maint on Feb 14th. I am not anywhere near where I'd like to be with my energy, but am knowticing some improvement with each passing week. I must admit though...come late afternoon and early evening I am pretty well spent. It's not un-common for me to drift off in my recliner for an hour or so after diner. It's going to take us time Hilde to get back to feeling perky again and our "new" perky may be scaled back a knotch...I'm thinkin. You take care, and "make" your doctor listen to you when you go in for your appointment. I'll keep you in my prayers and good thoughts. Love...Sue (FNHL-2-3A-6/10)

dixiegirl's picture
Posts: 1043
Joined: Apr 2006

Man can I relate. I have never reached the same level of energy I had before cancer. I do believe we reach a new normal, but I won't say I am happy with my new normal either. Some days I can do it, others I can't. It's kind of like my fibromyalgia....I take it a day at a time.

Here lately I haven't been feeling really great and my energy level stinks. I am in bed by 7Pm reading and asleep by 8:30. They've scheduled my pet scan for 3/2 with results on 3/3.
I'm very anxious.

Take care Hilde, it will get better with time.


allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Beth,
Good luck with your PET scan. Waiting a week will be hard, but at least you get your results the next day. The waiting and worrying is absolutely the hardest part. We are expected to get hit with some more snow by tomorrow and Friday...UGHHHH...I am sooooo ready for spring! I was starting to do my short daily walks again...better do it today or I'll be house bound again for a few days. Hang in there Beth, and if you get too anxious between now and next Wednesdays scan...just drop in here for a boost of encouragement.
Love...Sue (FNHL-2-3A-6/10)

merrywinner's picture
Posts: 627
Joined: Aug 2009

Hang in there and try to make them take you seriously. I wish I had some really helpful answers right now but the only thing that comes to mind is talking to your MD. What do you do with the rest of your time? Do you have some escape from the worry? I know for me, even when tired,making myself do some things does help. At the very least it gives me a reason to be tired, so I worry about it less. I don't mean to sound preachy or anything like that but I know if I were to let myself fall into the trap of nonstop worry it would become a vicious cycle of worry..tired..worry..tired etc. Just a thought and please take care. Mary

Posts: 444
Joined: Aug 2010

Hi, Hilde,

Yes, last night, I experienced a different kind of pain in my left leg and hubby said it was the "charley horse". Other times, it was the leg cramps - I find that drinking tonic water which has quinine that helped reduce such. But I have another issue which is not sleeping right - that is to sleep through the night. I have the habit of worrying, drinking water and taking meds when not feeling good and peeing in the middle of the night. I am trying to break this cycle. Now, I take less meds, try to drink more during the day, exercise more even tho, I am not fully gung ho for it. I took Activan which helped me sleep more and not feel as much pain.

Also, I remember feeling very fatigued few times then I got little more energetic by moving around a bit and eating more... Oh yes, after a month of chemo tx, I bought 3 inch memory foam for my bed and that helped a bit. Sometimes it is just that you may need rest for now to catch up... So sorry this is taking out so much from you. I hope you would feel better with time.

Take care,

vinny59's picture
Posts: 1032
Joined: Nov 2006

Hi Hilde, you are definitely not alone on feeling tired! I feel the same way, about 1PM I'm ready for bed. I work a long day and it is a challenge. The doctors told me it's the "new you" LOL. Same as we had to be when we were in treatment, listen to your body, if your tired get some rest, nothing wrong with that........ Vinny

Posts: 2
Joined: Feb 2011

I am new to the group but have been in remission since 2004. Still tired though. I don't think you ever get back to normal. Like they said just a "new normal."

Posts: 164
Joined: Feb 2011

Hi Cyndy, I too am new to the group. was diagnosed March 2010 - one year anni is March 8th when I was diagnosed, not sure how to mark the Cancer Free anniversary date. well, it's not really cancer free, but remission. That's great that you have been in remission since 2004! we all want to hear positive, optimistic experiences! CountryGal

allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Cyndy and CountryGal,
Just wanted to take a few minutes and welcome you both. It's not the best place to have to meet, but it's certainly the best place if you have cancer and needing support. Positive news is always great to hear, but the not so positive or daily trials and tribulations are always welcomed also. I think I would have lost my mind when I was firt diagnosed back in June 2010 if I hadn't found this wonderful group of people to talk with. My diagnosis is FNHL- stage3(no bone involvement)Grade2-typeA...slow growth indolent. I did 6 rounds of CVP-R from Aug 31, every 21 days, ending in Dec, right before Christmas. Had a CT-scan done on Jan 25th and it showed all the tumors were gone except the one under my colar bone. I am not in remission, but considered stable, and started my 2 year rituxan maint plan on Feb 14th. I go in once every 2 months for my infusion and so far the first one has been just fine. I'm praying the next 2 years will keep me stable and hopefully no new tumors will appear....just taking it one day at a time. Anyways ladies...thats my story and I just wanted to welcome you to our little family. Much love...Sue (age 60)...married 32 years with 2 grown sons, 2 grown grandchildren and a new grandbaby due in May. I live in Yakima Washington and have been retired from the Yakima school district since 2002..no...wasn't a teacher...worked in the maint and warehouse depts.

tcvine's picture
Posts: 174
Joined: Aug 2010

Hi Y'All,

Glad to see everyone. It's been a while since I've been on the board. Seems like since January I've gotten really busy.
Just wanted to say Hi and that I'm still thinking about y'all.

Anyway, I find that I am much more tired in the evening in comparison with the amount of work or activity that I actually have had. And, NO, NO, NO --- I refuse to accept it as the new normal. However, I have been VERY fortunate, as you know, through the whole process to not be nearly as sick as many of you. And now, after my last chemo on Nov. 23, most everyone here around me assumes that I'm back to normal. I know it's not that way because when I work out in the morning, I just don't get the stats that I got a year ago. But I have gotten back to most of my consistent exercise routines. And I have found that doing desk work for hours on end is leaving me much more fatigued than previously.

BUT, it really seems that I have been more fortunate than many of you in my recovery. I believe that it is just a matter of time for most of us to get back to the level that we want. I'm sure that those of you who were hit the hardest during chemo will take longer to get back to normal. But my wish for us all is that we get back to OUR normal, not our disease's normal.

I'm still thinking of you and wishing everyone speeding healing and recovery.
Tom (DLBCL-Stage 4-7/10-Remission)

miss maggie
Posts: 929
Joined: Mar 2010

Hello Tom,

It is wonderful to hear from you again. Thank you for thinking of us. You know you too have been in our thoughts.

How wonderful you have been so busy with this and that. Sounds good to me. I am so sorry you are still so tired. Hopefully with time, your energy will return.

I have never been on chemo, just Rituxan, once weekly for 4 weeks in Dec 2009. I have never felt tired as you and others have. I do get tired in the evening, which I think is normal. I am up early 7:30 AM, and busy all day long.

You too and others, feel well and stay positive.

Love Maggie DX 09/09 extranodal marginal zone B cell NHL remission Jan 2011

allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Tom,
I'm always glad to see you post! It's good you are exercising and doing, (from the sounds of it) pretty well. Me too...still a little tired and not 100%, but I'm working on it. I still have my "stinkin thinkin" days, but try not to let those days last very long. The thought of having to do major chemo again, (any time soon), just sends chills down my back...ha..(seriously though). Anyways..keep on, keepin on there Tom, and don't forget to check in now and then. Talk to you soon...Sue (FNHL-2-3A-6/10)

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