cjnelson's Journey with Primary Mediastinal B-Cell Lymphoma

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Diffuse Large B-Cell Lymphoma > Primary Mediastinal B-Cell Lymphoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 5 years ago, Female, Age: 33, Stage II

  1. 1
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
    cjnelson's Avatar

    Diagnosed

    Oh No

    I had been coughing and really flemmy for about a month or two, it was getting so bad that I was almost throwing up every morning because of the flem. I went to the Dr. off and on for the month and was told it was just allergies. I finally went to the Dr. on a monday and he gave be some cough pills. Then on Wednesday I went to a different dr. and he told me that it was just allergies and to try a different over-the-counter allergy medicine. By Sunday (my birthday) I was so sick feeling, clammy, short of breath, coughing, flemmy, and heart racing. I told my husband that we should just go to the ER and get checked out there to see if it was really allergies or if I actually had a cold of some sort. Blood tests, X-rays, and CT scan later, the Dr. came in and said "well it is not allergies...you have a large mass in your chest. The size of an orange." I immediatly thought it was cancer, but we didn't know the real results until later that week. I stayed a week in the hopsital because I just felt safer being close to the doctors since my resting heart rate was around 119. During that week stay I lost about 15 lbs.

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  2. 2
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
    cjnelson's Avatar

    Biospy, Lumbar puncture, Bone marrow biopsy

    Procedure or Surgery

    So I stayed in the hospital for a week after they found the mass. This turned out to be good because I was able to get all my procedures done that week, which I think made starting Chemo quicker. For the Biopsy it was CT guided and they just numbed the area where they would put the needle. it was in my chest so I could kind of see what was going on. My husband was allowed to sit in the room a little ways away from me which was kind of nice to have him in there. The biopsy prodedure didn't hurt and I couldn't really feel anything the whole time. At the end however they put some kind of gel to seal up the hole and it kind of expands in the wound, and that hurt a lot. It hurt every time I took a breath for about 3 days afterwards. A couple days after I got the biopsy done, I had the lumbar puncture and bone marrow biopsy done on the same day. First up was the bone marrow biopsy. Since I was having the two procedures done at the same time, they gave me some kind of sedative that made me fall asleep. They numbed my back/hip and before I fell asleep they started on the biopsy. This one hurt a little bit that's for sure. They had to really press hard to get a sample of my bone. Once I fell asleep I felt nothing, then they woke me up to wheel me into the CT scan area to perform the lumbar puncture. I fell asleep during that proceudre as well so it went fast for me and I didn't feel a thing. They woke me up and wheeled me back to my room, where I had to lay flat for 2-3 hours. I pretty much just slept those 2-3 hours because I was given some pain medicine.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
    cjnelson's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    I went to the hospital to have my port installed. It was a same day procedure. I wasn't allowed to eat anything before the surgery and I was supposed to report to the hospital in the morning. I had to wait for about an hour to two hours before they took to the surgery room. The drugs were supposed to knock me out while they installed the port but I was awake the whole time. The nurses were very surprised and said that the amount of drugs they gave me would have knocked out someone twice my size. The port is inserted into my chest on the right side. I have slowly gotten used to it, although I can't wait until I will be able to get it taken out.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I started R-CHOP on June 4th, I have 6 treatments and they are every 21 days. I will have my last treatment on September 17th. My side effects are minimal. I did lose my hair pretty much after the first round of chemo. My eyebrows have thinned a lot but they are still hanging on. The week of chemo, I am pretty fatigued and tired for the whole week. I have a little bit of nausea the first few days but then I am fine after that week. I haven't thrown up yet and that was what I was dreading the most. I get constipated the first week. I take stool softeners, eat fiber one bars, and popcorn to help with this. I don't have any other side effects than these really. I did have some numbness and tingling in my firsts but it comes and goes throughout the second and third week of recovery.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    When I went in to get my 5th round of Chemo, my white blood cell count was low. I was able to get my round of chemo but I had to come in the next day and get the shot to help boost my white blood count. I had been doing so good with my blood levels that when I was told this news I ended up in tears. It didn't help that the nurse and the Dr. both told me that I would be in pain and that my bones would hurt from it. I was then dreading the trip the next day to the dr. When I talked to the nurse that gave me the shot she said that about 50% of people have no pain, while 25% have flu like feelings and the other 25% feel like they got hit by a bus. This improved my outlook on the shot. She gave me the shot in the stomach because she said this is the least sensitive area, and it just felt like any normal shot would. Not painful but not great feeling either. The following days I felt a little sore but nothing too bad. By the next week I felt fine there was no bone pain or soreness at all.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  6. 6
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
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    External radiation

    Radiation

    I haven't started radiation yet but we met with the radiologist last week. I will be going in for my CT scan at the radiation center on the 26th and should be starting radiation the first week of October. I will have to go 5 days a week for 3.5 to 4 weeks.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  7. 7
    • cjnelson
    • Experience with Primary Mediastinal B...
    over 4 years ago
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    Cancer is shrinking

    Celebration

    I had a PET scan before I started Chemo and then after 3 rounds of chemo. The Dr. showed us the pictures of the before and after and it is such a difference. The cancer is about 95% gone. My husband and I were very excited to hear this news. I do have some scar tissue that has developed but the radiation will kill any cancer cells that are in the tissue.

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  8. 8
    • cjnelson
    • Experience with Primary Mediastinal B...
    about 4 years ago
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    Finished treatment

    Celebration

    I finished all my cancer treatments (Chemo and Radiation) on November 2, 1212

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