feeling worse a year after treatments finished

I finished chemo in april 2011 for hodgkins lymphoma (beacopp x8) was starting to feel better up until a couple of months ago. Had really bad joint pain and early menopause symptoms but was feeling positive. Now everything seems to be getting worse. The fatigue has increased, its like someone presses a button to the 'off' position several times a day and I have lost the drive I once had. I have swollen lymph glands and infections constantly, with at most a weeks break in between. Headaches, fevers, sweats, breathlessness and flu type symptoms are constant. In August I started with severe pain in my left shoulder, which would make me feel sick with any sudden movements. Ultra sound showed bursitis and frozen shoulder, this pain has got worse and radiates down my arm into my hand. Physio eases the pain, slightly but injections did not help. Having MRI next week to ensure nothing more sinister. WBC very low still, explaining the infections, but like most in remission, in honesty, everything scares me now. Hate the fact that I have become a walking hypochondriac. Reading these posts does make me feel better, so hopefully theres someone out there who reads this and relates to my symptoms.


  • allmost60
    allmost60 Member Posts: 3,178
    Takes time..
    Hi Libby and welcome to our group,
    I finished my CVP-R chemo(6 rounds)one year ago today and I'm currently doing Rituxan maint every other month. I'm almost done with year one of Rituxan with one more year to go. I do not have all of the symptoms you are experiencing, but do still have fatigue, sore achey joints and shortness of breath when I have to walk up and down stairs. I'm glad to hear you are getting a MRI to check things out. I don't think you are a hypochondriac...chemo takes alot out of us and it just takes time to feel better...some longer than others. I get scared also when little things pop up unexpectedly..minor sore throat, sniffles, etc...it's pretty normal for cancer thoughts to creep in our thinking. Early meno is hard and can cause many of the symptoms you have listed, so maybe a discussion about menopause medications should take place with your doctor. When our hormones get all messed up it can really make things miserable for us....(been there, done that...UGH!) Please come back and let us know what you find out from the MRI. I'll keep good thoughts and prayers for you to start feeling better soon. Take care...Sue
    (Follicular NHL-stage3-grade2-typeA-diagnosed June 2010) age 61
  • vinny59
    vinny59 Member Posts: 1,032
    Hi Libby, OMG can I relate, I have been out of treatment for a year, and I got to tell you I too,feel like crap!!! I get hot flashes, I'm ready for bed by 11 am, My WBC are below normal range, and I get flu like symptoms all the time. I talked at length with my oncologist about this, after my last PET scan, which by the way still has a uptake showing, and she explained it to me that the treatment we go through to kill the cancer cells are severe. It will take a long time to start seeing any changes. I'm always a positive person, and I keep on thinking where I was a year ago, In a chair recieving chemo.... not working. So I will take this "new" me, lol... good luck and stay well Vinny
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Feeling worse
    I remember very well when Vinny was having all those problems with chemo. We were all so worried about him. He's a trooper and in time started doing better. I do not know if his problems were as severe or worse than yours,but as you can see he is now enjoying life. The chemo hits us all in different degrees.The chemo poison they pump into our bodies really take a toll and takes time to really get back to normal if we ever do. I was tired for so long after finishing chemo(R-CVP) over a year ago and still not 100% today. It appears to get better everyday a little. What concerns me is the sweats you have. Then the temps. cause a little concern as well. I never had any of them. Make sure you run all that by your Onc. or nurse.Your WBC determines how well you fight off any infections. If its low you are so prone to any infection. The red blood cell count is very important in the amount of energy you have. It can be low normal and you can still feel tired.The amount of sleep you get at night can also affect your energy. You may sleep 8 hours ,but is it an uninterrupted sleep or not. Have your blood work rechecked as soon as possible.John
  • jimwins
    jimwins Member Posts: 2,107
    Hey Libby and welcome
    Hey Libby and welcome.

    I recently finished chemo so I'm just learning the new normal for me.
    I have recently had some joint aches which is not normal for me but I've
    also been fighting something that's going around which I probably picked
    up from my sister. Hopefully that's all it is. You guys are right -
    after cancer/treatment, every little thing is scarier.

    I hope you feel better soon.

    Hugs and positive thoughts,

    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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