Low Energy and sleepless nights

hilde451
hilde451 Member Posts: 229 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi Everyone:

I have done the Zevalin in December 23,09, So last December was a year.
I still am tired and my blood work has not totally recovered yet.
I seem to not sleep at night anymore. I have very bad nights. Never in my life had a sleep problem. Plus have muscle pains I can not lay on either side of my hips and upper leg muscles.
So I do not know what is going on with me. I go back to my Oncologist on March 4,
I suppose we will see. I have not heard anything on the long term effects of Zevalin.
Would like to hear pro and con once.
Hope everyone is doing well.
Hilde

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Low energy
    Hilde,
    I know what you mean about the low energy. I have only been out of treatment for 3 1/2 months and still can;t reach that 100% Its close but no cigar yet. Its not hat I do a little something and then get tired. I wake up a little tired and stay that way all day. It really doesn't wear me out if I exert myself. I don't get tired quicker,I just never feel 100%. Does thay make sense? My blood counts stayed in the high range up till the 5 round of r-cvp. They dropped but not that much. I was still in the normal range. I haven't had any blood work since Oct.2010. i just started taking iron supplements recently to see if that helps.John(FNHL-1-4A-5/10)
  • britta
    britta Member Posts: 107
    #3
    Hilde,
    Boy, I understand how
    Hilde,

    Boy, I understand how you feel. I have so many sleepless nights, sometimes I don't fall asleep until 7 in the morning, even after taking Ambien. Have taken to sleeping in a recliner because I can't lay on my sides either, hip and upper thigh pain. I also ache if I do a little too much. Still, it's all better than having that darn cancer come back!

    Let us know what your onc says when you see him next. I mentioned the no sleep to my onc and he told me to take my blood pressure pill at bedtime. That really hasn't helped.

    We here in MN are waiting patiently for Spring, only two months away now, although we have so much snow we probably won't see the grass til May. lol

    Take care,

    Darlene
    Darlene
  • KC13167
    KC13167 Member Posts: 215
    #4
    Hip/Thigh Pain
    Hilde,

    I too have hip and upper thigh pain, which increases at bedtime. I wake up each time I change position in bed; needing to sit up in order to reposition myself in a comfortable position. My onco stated that my pain is from my spine. When I was diagnosed, 6/10, my largest tumor was against my spine at the lumbar and sacreal areas. This spinal compression also makes walking up stairs very difficult.

    Kellie
  • yesyes2
    yesyes2 Member Posts: 591
    #5
    KC13167 said:

    Hip/Thigh Pain
    Hilde,

    I too have hip and upper thigh pain, which increases at bedtime. I wake up each time I change position in bed; needing to sit up in order to reposition myself in a comfortable position. My onco stated that my pain is from my spine. When I was diagnosed, 6/10, my largest tumor was against my spine at the lumbar and sacreal areas. This spinal compression also makes walking up stairs very difficult.

    Kellie

    Hip Pain and Steroids
    Hilde and Kellie,
    Has your onc ruled out that your hip and leg pain isn't coming from necrosis from the steroids used for chemo? Don't mean to scare but pred and deth can both cause this condition.
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    #6
    yesyes2 said:

    Hip Pain and Steroids
    Hilde and Kellie,
    Has your onc ruled out that your hip and leg pain isn't coming from necrosis from the steroids used for chemo? Don't mean to scare but pred and deth can both cause this condition.
    Leslie

    Minn
    Hey Darlene,
    I'm originally from St Paul. Couldn't handle the heat and humidity in summer and the bone chilling cold in winter. Bay area is just right for me. Havn't been back to Twin Cities sine 1998. boy thats a long time.
    Leslie
  • KC13167
    KC13167 Member Posts: 215
    #7
    yesyes2 said:

    Hip Pain and Steroids
    Hilde and Kellie,
    Has your onc ruled out that your hip and leg pain isn't coming from necrosis from the steroids used for chemo? Don't mean to scare but pred and deth can both cause this condition.
    Leslie

    Steroids and Hip Pain
    Leslie, thank you for the information. I have been followed by an Ortho for the past 3 months. There has been nothing showing on the films or MRIs that would indicate necrosis. I am scheduled to have repeat onco scans later this month and will ask about the pain again. Yucky, necrotic bones sound horrible. Kellie
  • britta
    britta Member Posts: 107
    #8
    yesyes2 said:

    Minn
    Hey Darlene,
    I'm originally from St Paul. Couldn't handle the heat and humidity in summer and the bone chilling cold in winter. Bay area is just right for me. Havn't been back to Twin Cities sine 1998. boy thats a long time.
    Leslie

    Smart Lady
    Leslie,

    I wish we would have moved from here long ago. Always intended to at least be a snowbird, but now have to stay close to doctors and actually home feels pretty good. Not really interested in traveling right now. It's 3:55 A.M. and I'm having one of my sleepless nights so signed on to see how everyone was doing. Someone in my Cancer Support Group passed away and the funeral is tomorrow. She fought a good fight, but is now in her heavenly home and in no more pain. It's still hard.

    Darlene
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #9
    britta said:

    Smart Lady
    Leslie,

    I wish we would have moved from here long ago. Always intended to at least be a snowbird, but now have to stay close to doctors and actually home feels pretty good. Not really interested in traveling right now. It's 3:55 A.M. and I'm having one of my sleepless nights so signed on to see how everyone was doing. Someone in my Cancer Support Group passed away and the funeral is tomorrow. She fought a good fight, but is now in her heavenly home and in no more pain. It's still hard.

    Darlene

    Support Group
    Darlene,
    So sorry to hear about your friends passing.Now I am going to ask you the question that passed through everyones mind that read your post. What type of cancer did your friend have? John(FNHL-1-4A-5/10)
  • tcvine
    tcvine Member Posts: 174
    #10
    COBRA666 said:

    Low energy
    Hilde,
    I know what you mean about the low energy. I have only been out of treatment for 3 1/2 months and still can;t reach that 100% Its close but no cigar yet. Its not hat I do a little something and then get tired. I wake up a little tired and stay that way all day. It really doesn't wear me out if I exert myself. I don't get tired quicker,I just never feel 100%. Does thay make sense? My blood counts stayed in the high range up till the 5 round of r-cvp. They dropped but not that much. I was still in the normal range. I haven't had any blood work since Oct.2010. i just started taking iron supplements recently to see if that helps.John(FNHL-1-4A-5/10)

    Low energy
    Hello All,

    John, you nailed it perfectly on the energy thing. For me, I'm not even close to 100%. I have gotten back to a regular exercise schedule. (We are very fortunate to have a fitness room upstairs with a big-screen.) It's not a gym, but we do have an eliptical, a treadmill, a bike, a rower and a bowflex. That sounds great, but it means I have no excuses! So I've been going up about 5-6 days per week. But my most consistent thing is to row while watching an action movie. The movie thing has been very effective in helping to keep me going. But my statistics (performance) compared to before chemo is just TERRIBLE! I used to be able to do 5000 meters rowing in around 21- 22 minutes. Now I'm lucky to make it under 25. And there are other parameters that I keep track of, so I know that this is going very slowly.

    And if I have have a full day of activity - I am really beat by the end of the day. I'm afraid it's a long time to get back to normal.

    Sleep wise, I've never been able to sleep well. 4 to 5 hours a night is the most I've gotten in a long time, so I'm no judge for that.

    But energy and sleep - I wish that for ALL of us, at every stage we are in!
    Tom (DLBCL-Stage 4-7/10-Remission)
  • britta
    britta Member Posts: 107
    #11
    COBRA666 said:

    Support Group
    Darlene,
    So sorry to hear about your friends passing.Now I am going to ask you the question that passed through everyones mind that read your post. What type of cancer did your friend have? John(FNHL-1-4A-5/10)

    Support Group
    I know she had lung and brain cancer, don't know what kind, but I did find out today that she'd had Lymphoma 20 years ago. She was 72 and a very sweet christian lady, even though she was weak and sick she was always there for others. Just like here. Thanks for caring John. I didn't know her well, I just joined the group this last summer and it's once a month. I found it on the internet, and it was the only christian support in the Twin Cities which surprised me. I think our group here is more open and more in touch with each other's feelings beeing we can talk every day or as often as we want.

    Thanks for always responding to everyone and for your sense of humor. I do enjoy your postings John.

    Darlene

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