WVUGirl76's Journey:

Patient: Hodgkin Disease > Classic Hodgkin Disease > Nodular sclerosing

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Female, Age: 41, Stage IV

  1. 1
    • WVUGirl76
    • Experience with Nodular sclerosing
    about 3 years ago
    WVUGirl76's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Treated with ABVD. I found the ABVD to be not that difficult. I could have worked while doing it but did not. As long as I kept up with my nausea meds. It wasn't that bad. I didn't have my normal energy levels and my hair thinned and did not completely fall out but I ended up shaving it off.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • WVUGirl76
    • Experience with Nodular sclerosing
    about 3 years ago
    WVUGirl76's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    For me, the port was a blessing. Prior to the port, I had a catheter and that was a pain, the port meant that I could swim, bathe and enjoy the daily activities of my life. It also saved my veins. It was a relatively simple procedure to have the port placed. Local sedation, total time was about 20 mins. A bit sore afterwards for a day or so but no worse than pulling a muscle and nothing that advil can't handle.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  3. 3
    • WVUGirl76
    • Experience with Nodular sclerosing
    about 3 years ago
    WVUGirl76's Avatar

    Cancer has spread/Metastasized

    Oh No

    Much to my dismay and sadness, the first PET scan I had after I had started treatment (To determine if treatment was working) showed that while some spots were responding to the treatment, there were new spots popping up and some spots were growing.

    0 Comments
  4. 4
    • WVUGirl76
    • Experience with Nodular sclerosing
    about 3 years ago
    WVUGirl76's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    After ABVD failed, I was switched to escalated BEACOPP. This chemo made ABVD seem like a party. It is extremely toxic and regimen. The regimen is given over a several week period. It breaks down as follows: Drug Dose-Escalated BEACOPP Method Cycle Day (B)leomycin 10 mg/m² i.v. push day 8 (E)toposide 200 mg/m² i.v. infusion day 1-3 (A)driamycin (doxorubicin)35 mg/m² i.v. push day 1 (C)yclophosphamide 1250 mg/m² i.v. infusion day 1 (O)ncovin=Vincristine 1.4 mg/m² (max 2 mg) i.v. infusion day 8 (P)rocarbazine 100 mg/m² orally day 1-7 (P)rednisone 40 mg/m² orally day 1-14 I found this to be extremely difficult. I was physically wiped out, I was nauseous, it destroyed my white counts despite neupogen and neulasta and I lost all my hair. Completely bald, it all fell out within days of starting this regimen. I would do it all again and again if it meant I would live so I do not want to scare anyone, I am just trying to be honest about the effects on me.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  5. 5
    • WVUGirl76
    • Experience with Nodular sclerosing
    about 3 years ago
    WVUGirl76's Avatar

    Hospitalization

    Other Care

    After my last cycle of BEACOPP, I was neutropenic. One morning, I awoke and just didn't feel good. Within 2 hours of waking, I had a fever of 103. I was in excruciating all over pain. I was rushed to the emergency room where I received the diagnosis of Septic Shock. Fortunately, they were able to stabalize me. I was in the ICU for several days and then moved to the oncology wing where I stayed for a week until I was no longer neutropenic. It was determined that I had the beginnings of a urinary tract infection and that is what caused my fever & symptoms. I share this story so that others may know the importance of practicing extreme caution while neutropenic. Excessive hand washing, hand sanitizing, crowd avoidance.....This episode nearly cost me my life. When you don't have white blood cells to protect against infection, it is critical that you take all necessary precautions as well as react as necessary (IE- go to the hospital if your temp. goes to 100.2) because you will get sicker much quicker than others and than you ever have before.

    1 Comment
  6. 6
    • WVUGirl76
    • Experience with Nodular sclerosing
    about 3 years ago
    WVUGirl76's Avatar

    Fertility

    Loss

    I was 35 when I was diagnosed. I had just had my first baby and I was elated. I was literally thrilled to be a mom. I have always wanted to be a mother and having my son felt like such a gift. 4 weeks later I was diagnosed while at a follow-up appt. with my OB. I felt like I went from the highest high of my life to the lowest low in minutes. It was devastating. After the staging and it was determined that I was stage IV, the Dr. Recommended starting treatment immediately. My husband and I had overnight to make a decision about saving my eggs or starting treatment. We chose treatment. I would find out later that my Dr.'s were concerned that I would die at anytime because their were tumors wrapped around my lungs. They feared that my lungs would be punctured and I would suffocate. I believe I made the only real choice that I had and it was because my husband said this to me "If we wait to save your eggs, we take the chance that you won't live, isn't it more important to be a mother to one child then not around for any".....He was right, I had a responsibility to him and to my son and myself to fight this thing. We started treatment the very next day. I had one mensus during treatment and then it stopped. That was 3 years ago (2011) and it has not returned. I did not expect it too as I would go on to have BEACOPP and then an auto transplant. BEACOPP causes infertility almost always and so does the auto transplant. Being that I had a double whammy, it would be a miracle if it returns. That said, I do believe in miracles. I'm a realistic Optimist.

    1 Comment