GlitterGrace's Journey with Hodgkin Disease

Survivor: Hodgkin Disease

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 8 years ago, Female, Age: 34, Stage III

  1. 1
    about 5 years ago
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    Biopsy

    Procedure or Surgery

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

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  2. 2
    about 5 years ago
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    Diagnosed

    Oh No

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

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  3. 3
    about 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    The surgeon who performed this surgery explained the process and where the port would go. The one thing he and I have not agreed on since, is where he put the port. It's right in my cleavage! It was very uncomfortable to sleep with it there and I now have a large scar. The other issue I've had with the port, is it's not a "power port". So even though I can have blood drawn from it and chemo given, I still had to have an IV each time I went for a CT or PET scan.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Beginning May 12th, I received 12 doses of ABVD chemotherapy. Every other week, for nearly 6 months.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    about 5 years ago
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    Allergic reaction

    Side Effects

    The first day or two after treatment, I had a lot of energy because of the steroids I was given before the chemo. Sleeping was also restless because of it. Usually on day three the nausea would start. I just felt blah! No energy, no appetite. The Bleomycin (part of the ABVD treatment) caused trouble with my lungs after dose 7 or 8. I could hardly breathe! So they took me off that drug.

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  6. 6
    about 5 years ago
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    Surgery

    Procedure or Surgery

    Another biopsy to be sure that it was the same type of Hodgkin's.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  7. 7
    about 5 years ago
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    Finished treatment

    Celebration

    After six moonths of chemo, an allergic reaction to Bleomycin, decreased lung function, we celebrated being "cured" as the doctor put it.

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  8. 8
    about 5 years ago
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    Cancer is back/Recurred

    Oh No

    Right about the time of my 3 month follow up CT scan I was itching uncontrollably. My stomache was scratched raw, it itched so much. Sure enough the oncologist called to tell me I had relapsed. Instead of him trating me, this time I would meet a hematology oncologist 4 hours from home and discuss stem cell transplant.

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  9. 9
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Three weekend stays at the hospital. I would admit on friday afternoon and be released Monday morning. Awful chemo called ICE.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    about 5 years ago
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    Fundraiser

    Celebration

    Friends and family held a couple of fundraisers to help out and show support of my little familly. A fashihon show, silent auctionl, luncheon, a yard sale and a spaghetti feed. I felt loved by my community!

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  11. 11
    about 5 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    For up to ten days I was to give myself neupogen. White blood cell booster injections. I had never given myself a shot before and I hated it! The first couple days it took me twenty minutes to work up the courage to pole myself. The side effects were that my bones hurt or ached.

    Easy to Do: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  12. 12
    about 5 years ago
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    Harvest Stem Cells

    Procedure or Surgery

    I had to have a central line into my artery of my neck to harvest stem cells. They didn't sedate me completely to do this, so I was awake, but loopy while having my neck cut into. That part was fine. Being wheeled up to have the stem cells pulled was fine. For that, its a machine that separates the baby cells from the mature cells. I needed to collect 6000, and it may have taken a couple days to get enough. They sent me home (to where I was staying) for the night and would call after the cells had been counted. The call came and I had collected 13000 cells in one cycle! So the following morning I was to go back and have the line taken out of my neck. Well at dinner that night, it started leaking. I rushed to the closest ER, where after several hours of waiting, I had the line removed and went home.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
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  13. 13
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    This was an eight day course of chemotherapy, done as an in-patient, followed by getting my stem cells back. I had a reaction to an antibiotic on one of the first doses. From then on they gave me benadryl with it. The chemo was strong, it took the lining from my esophogas. I couldn't even swallow on my own for two or three days. I had to be given nutritional support, which was disgusting! It's basically a bag of fats, administered IV. It smelled awful! On day 10, the nurses administered my stem cells back through and IV. Although it was similar to having a bag of platelets, it made me nauseous to think about it. It looked like tomato juice. On day 13 I was released from the hospital.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  14. 14
    about 5 years ago
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    Outpatient-stay close to hospital

    Other Care

    After I was released from the hospital I had to stay in the area for two weeks to a month, depending on how my blood counts were and how I was feeling. Since we lived four hours away, we found a place to stay. I had to drink a lot of water. I couldn't eat restaurant prepared food or fresh produce. For that would risk infection. My husband and daughter (3 1/2) came to stay with me and take care of me. I didn't have much energy and was easily fatigued. After visiting the hospital every three days for lab work and check up, after only a week and a half they told me I could go home.

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  15. 15
    about 5 years ago
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    Finished treatment

    Celebration

    We celebrated when I got to go home! We didn't tell my parents we were coming home yet, so on father's day, when they came out to check on things at our house, we hid the car and surprised my parents. That was the best father's day dift I could give my dad!

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  16. 16
    about 5 years ago
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    Join Clinical Study

    Decision Point

    I was asked to particpate in SGN-35 clinical study. It's a targeted drug to kill only Hodgkin's cells, not the rest of the healthy cells too. I was all for it, my husband wasn't as sure. I was for it! I talked him into it, by explaining that after the 11 chemo drugs I had already gotten, number twelve couldl only help. So in the end, I joined!

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  17. 17
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    For the mext year, I went to chemo every third week. It's double blind, so the doctor, nor I know whether or not I get the real thing or placebo. Neuropathy of the fingers and toes was my side effect, which would mean that I was getting the real thing. But after what I've been through, sometimes I wonder if it's just in my head. CT scans every three months.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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