Side-effects of treatment

JMRF6
JMRF6 Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hodgkin's Stage IIB. Went through Stanford V treatment last fall/winter. By Christmas, falling at odd intervals and trouble standing/walking. Admitted to hospital for "paralysis" below the diaphragm---by then couldn't walk, support self, no feeling of bladder/bowel, able to move legs side to side but couldn't lift off of bed. Arms somewhat better but still weak. Spent 1 month in hosp. with lots of tests coming back negative. Took a month to get from bed to wheelchair, another month from wheelchair to walker,etc. walker to cane. Now, still using cane because knees feel like they will give out especially with up/down stairs and walking. Can't get to sitting/standing without assistance. Dr.s are stumped and all I get are shrugging shoulders. Trial of Carnitine and Lipoic Acid. Not sure if working. ANYONE else out there have these side effects??? Is this permenant?? Finished 20 days of radiation last month but no follow-up scans since January. Next visit w/ oncologist and radiologist in next couple of weeks.
THANKS for any info

Comments

  • positive
    positive Member Posts: 75
    #2
    Hello, JMR where you taking prednisone or any steroids during treatment. I remember when my dad was taking prednisone his legs got really weak. My dad is in remission for a year now and seems to have all his strength back. He does have neuropathy in his feet from the chemo, the neurologist has him taking alpha lipoic acid and vitamin E and his has given him more energy. Alpha lipoic acid is good for the nervous systems. I wish I could help you find what this is coming from. The oncologist are aware of all the side effects from chemo and radiation, your best way of getting to the bottom of this is by your oncologist. My dads side effects after the radiation were no tastebuds, burned neck, weakness everything seems to have gotten much better it takes time, he also he joined a gym and keeps active. My dad was diagnosed with Stage IIA December 2003. He had 4 cycles of ABVD and 17 radiation treatments at age 71. I know how your feeling, scared and upset and wanting some answers. I hope you get some answers soom keep us posted.
    Lots of hugs and support
    jcm1101@aol.com
  • lhodnet
    lhodnet Member Posts: 62
    #3
    Hello! I was dx HDL IIBX - went through 12 weeks of stanford V. I was ok through most of it but the vincristine really made my hands numb. That went away about 2 mos after chemo. Almost immediately following, I noticed my legs were going numb if I put my chin to my chest. I tried everything and the dr's were baffled. Said it was a side effect that could last from a year to ?!?

    I wasn't thrilled with that answer and I branched out into foreign territory - eastern medicine. Now eastern medicine isn't for curing ailments, but it is for resetting your inner self. I have been going to accupuncture for 1 month and have had AMAZING results to the numbness in my legs.

    It is almost completely gone except for if I over do it in exercising.

    I am very sorry that this happened to you - I understand that this could be a side effect. I really hope that things turn around for you -
  • nathalie
    nathalie Member Posts: 12
    #4
    Hi. I had Hodgkins stage 3 and I recently finished my radiation. I also had bad side effects to where I could not stand, walk or do anything for the whole six months of my chemo (ABVD). The doctos told me that in due time things will get back to normal. I had bad joint pains after chemo but now (3 months latet) it is way better but I do feel pain here and there. I believe your body just has to slowly heal and get rid of the toxins. Trust me.. you will get better. Good luck!!
  • Alan61
    Alan61 Member Posts: 3
    #5
    Hi:JMRF6, I had Hodgkin's Stage 1A at the age of 17 and went thru some 38 radiation treatments of colbalt 60. The Dr's told me that after 5years I was cured, but what they didn't tell me was about the long term side effects of radiation. It has caused me Heart problems,Thyroid Problems,Breathing problems and the most recent Digestive problems. The reason I'm telling you this is because you must learn early that you are your best advocate and you must stay on top of your condition and let the Dr.s know everything and any little change. Please understand I didn't have any chemo it was just radiation.I also want you to know that my thoughts and prayers will be with you.
  • itsjussttmee
    itsjussttmee Member Posts: 1
    #6
    Alan61 said:

    Hi:JMRF6, I had Hodgkin's Stage 1A at the age of 17 and went thru some 38 radiation treatments of colbalt 60. The Dr's told me that after 5years I was cured, but what they didn't tell me was about the long term side effects of radiation. It has caused me Heart problems,Thyroid Problems,Breathing problems and the most recent Digestive problems. The reason I'm telling you this is because you must learn early that you are your best advocate and you must stay on top of your condition and let the Dr.s know everything and any little change. Please understand I didn't have any chemo it was just radiation.I also want you to know that my thoughts and prayers will be with you.

    I found out I had Stage 3 Hodgkin's Disease at 17, 2 weeks after my son was born. That was 22 years ago. I too have several health problems....Heart, stomach, spinal disk disease, frequent infections...etc.. Caused from Chemo and Radiation docs tell me.

    I wish you the best. Take Care,

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