carolk2222's Journey with Hodgkin Disease

Patient: Hodgkin Disease

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 35 years ago, Female, Age: 59

  1. 1
    almost 6 years ago
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    Oh No

    This person has yet to add any details about this experience.

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  2. 2
    almost 6 years ago
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    Procedure or Surgery

    Had biopsy first to see what type of cancer it was. Then had exploratory laparotomy to determine where the cancer was spread and to remove enlarged spleen.

    Went as Expected: Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    almost 6 years ago
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    Diagnosed

    Oh No

    I had my first baby girl in April of 1982. While I was pregnant for her had night sweats. Thought that was hormonal. Also itched from head to toe with no relief. No rashes or anything that might cause the itching. Saw family dr about that. Checked blood sugar and that was ok. Can't remember if any other tests were done. My baby was born. Continued with the night sweats and itching. Had my 6 month check up with gynecologist. He Checked my neck with the exam and found I had enlarged lymph nodes. Gave me antibiotics and had me come back in 2 weeks. Lymph nodes still enlarged. Had chest x-ray that showed large mass in my chest. Then biopsy done of lymph node in my neck and that showed the Hodgkins.

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  4. 4
    almost 6 years ago
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    Radiation

    No pain with being zapped with the radiation. You go in and get it and come out in a few short minutes. At least that was the way it was in early 1983. I had a very burnt and raw throat. Was hard to swallow anything and not much seemed to taste good. Just had a bad taste in my mouth. My underarms were burnt bad from the radiation. That was painful. Lost some hair on the back of my head because while I laid on my back for treatments they had me put my head as far back as I could I think to protect my teeth.. One good thing was that the itching stopped as the radiation was killing the cancer cells. The dr had told me once treatment started that the itching would stop. The itching was a symptom of the cancer. Not everyone has itching though

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    almost 6 years ago
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    Other

    Side Effects

    I told of the side effects under the radiation experience section. I do have some side effects now 29 years post radiation. I have muscle deterioration of my neck, shoulder and upper back muscles where the radiation hit me. I also have pain in those areas and muscle weakness in my neck making it difficult to hold my neck upright.I can say I started noticing (as I think back )the problems starting at least 10 yrs ago and gradually getting worse. My posture looks horrible with my head wanting to pull forward. I can't stand up straight. Because my neck wants to drop forward I have overcompensated and thrown my head back to keep it upright and then arched my back and my low back hurts also. In may it dawned on me that the problems with my neck and back might be related to the radiation. I was going to therapy and chiropractor for the pain. Massages also but as the muscle was wasting the massages hurt. I decided to google "muscle deterioration post radiation" and at least three articles popped up with studies done on that. Start of symptoms ranged from 3 to 30 years. The descriptions given of the patients physical problems matched mine. I The problem with holding up the head was called "dropped head syndrome". I sent the info to my family dr, oncologist( that I hadn't seen in yrs), the chiropractor and phys therapist. They all agreed the description in the articles fit me to a T. Of cours the oncologist hadn't seen me so didn't know but wanted me to come see him because as the other medical proffessionals, he had never heard of this. I had e-mailed one of the neurologist that wrote one of the articles and with my description of myself he thought it probably was this. He told me just a small percentage of people are affected this way and he hadn't see anyone for years. How did I get to be one of the lucky ones? Who knows. There is no cure. The muscles are wasted. Just comfort measures. They suggest a soft cervical collar. I tried that and my head still goes forward. I feel down about it because of how I feel physically,but was thankful the radiation stopped the mass. I was also blessed to have 2 more daughters after having treatment. Now I can also say I am blessed because that 6 month old baby girl is now 29 and has a 8 month little boy. When I heard the word cancer back then I didn't even know if I was going to see her grow up! Praise God for His blessings!

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  6. 6
    over 5 years ago
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    Other Care

    I found an internist to replace my family doc who really has not been helpful to me with my physical problems. She thought it would be a waste of time and money for me to see a neurologist. My oncologist from years back thought I should. He sent me to a neurologist back in Sept. I have had an EMG that was abnormal. Blood work CPK( that is an indicator of skeletal muscle damage). It has been in the lower abnormal range. I have had it checked 4 times now and has been pretty consistent. They were trying to make sure I don't have an underlying muscle disease besides the muscle deterioration from the past radiation. I had an appt with specialist in neurology that deals with radiation problems but in spinal cord. I just can't find anyone that deals with muscle deterioration. I am getting worn out mentally and physically trying to find answers and about ready to accept this is it the rest of my life. Almost to the point of giving up. Don't know if the deterioration will continue to progress slowly and if I will just become decrepit. I just really want to find another person with these symptoms I can talk to and relate to. Then I start feeling guilty because I know there are others physically worse off than me. I just can't keep up with work. I hurt so much just trying to keep my head upright. I am the insurance carrier for my my husband and myself because he is a farmer. I am scared to try disability. What if I get denied, then what? We wouldn't have money and the farm could be taken away. Getting pretty down and depressed.

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  7. 7
    almost 5 years ago
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    Other Care

    This person has yet to add any details about this experience.

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  8. 8
    almost 5 years ago
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    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  9. 9
    almost 5 years ago
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    Other Care

    I was looking at what I wrote about my experience quite some time ago. I have a couple updates. I fell in September 2011 and had a spiral fracture in my right hand. I had to have a plate and screws put in to stabilize the brake. I was off of work for awhile. When I went back it was very hard for me to resume and keep up with work. It was getting hard before I had the break but now worse. I had a ruptured bicep tendon in my right arm last Jan 2012. That kept me away from work for three months. It is felt that what caused it was my poor posture of leaning forward because of the muscle deterioration. I felt that was the final straw to help me decide it was time to trust God and file for disability. That was such a hard decision for me. I have always worked. I am not lazy. But I physically just couldn't do it anymore. Several of my co workers said "I think God is trying to tell you it is time to quit and try and get disability. I applied and have been denied twice. I have a lawyer now. It will be a yr maybe until I find out. So far we are making it with the help of God. I have the cobra insurance and my husband had to get private. That doubled our insurance cost and because I quit working it cut our income in half. In Oct I had an EMG of feet do to pain that I have dealt with for quite a while. That is neuropathy. I feelguilty even posting some of this since I see so many on here going through so much more than I am or have gone through.

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  10. 10
    over 2 years ago
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    Side Effects

    Well I now have had my heart affected by the radiation. I had to change doctors in order to find that out. My previous family doctor would not order an echocardiogram for me even after I presented him with recommendations from articles written by doctors saying that an echocardiogram should be done every 5 years for patients that had mantle field radiation years ago. Anyway I changed doctors and my new doctor listened to me and ordered an echocardiogram and I had it done on March 25th. It was abnormal so I was sent to a cardiologist. I saw the cardiologist on Tuesday April 28th. He told me that I have a very sick heart. I have cardiomyopathy pulmonary hypertension, an enlarged left ventricle with an ejection fraction of 25%. The normal is 60% to 70%. Also all of the valves in my heart are leaking. I have a cardiac cath set up for next Thurs May 7th to see what damage I might have in my heart. The cardiologist that I saw is very well aware of problems in the heart caused by radiation and chemotherapy. He put me on a medication for my heart to help treat heart failure. I also had a dexascan and now have osteoporosis too. It is just unbelievable that the radiation can continue to work in my body as it has.

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  11. 11
    about 2 years ago
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    Side Effects

    This person has yet to add any details about this experience.

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  12. 12
    about 2 years ago
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    Pain

    Side Effects

    I need to add that I have pain in my left leg especially when I first get up in the morning.When I have to walk too much or just standing. I had pinched nerves in my lumbar area. These nerves became pinched because of my poor posture, My poor posture was from my muscle weakness in my neck causing the dropped head syndrome. I had to stand with my chin resting on the palm of my hand with my one arm across my chest holding the elbow so I could support my head. I also arched my back in order to stand upright while standing or walking. Anyway the nerves became pinched last summer. I developed awful sciatic pain on my right leg and general pain in the left leg. I saw a surgeon on April 2nd 2015. He looked at my MRI of mu back and told me I was a mess and that he couldn't do surgery on me. While I was in his office I had a horrible sciatic attack. I guess he felt very sorry for me and my pain situation. He put me in the hospital right from his office for pain management and then did surgery on April 3rd to free the pinched nerves. My right leg has no pain but the left leg continues to have pain. The pain doc has me on neurontin and assures me I will eventually be free from pain. At this time I find it hard to believe because I really can have some burning and unrelenting pain.

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