kiki95632's Journey:

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Marginal Zone B-Cell Lymphomas > Extranodal Marginal Zone B-Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 10 years ago, Female, Stage IV

  1. 1
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 4 years ago
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    Nausea/Vomiting

    Side Effects

    Am on Treandra and pain and nausea is bad...6 days after treatment and is not easing up.

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  2. 2
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I am doing chemo with Rituxan and Treanda every 28 days for two days in a row. My oncologist said that it would be easier than being on CHOP and Rituxan. That there would be less side effects. He said that only 5 percent get side effects. I happen to be in that 5 percent. I am tire all the time, for weeks on end. I have no energy nor desire to do anything. My stomach aches all the time, and we figured out it was because I am not having a bowel movement on a consistence basis. Am taking everything to make me go and some days it helps and some days it just doesn't. It has made life miserable. I eat knowing that hours after I am going to be sick to my stomach and have pain. Right now my husband is having heart issues and has been hospitalized twice in the last 40 days so I try not to give him more stress by telling him I am not feeling well. With both of us sick, medical bills, copays and drug costs are draining us. This is my second marriage, I was widowed, met him and we have been married only 10 months and it seems like there has been so much sickness in our short marriage together. I just want to feel normal again. I feel isolated because soon after we married I moved in with him and it is 2 hours away from family and friends. I have not made any friends in the last 10 months because soon after I started chemo and really no chance or way to begin friendships. My friends email and call but are busy with their lives and I don't see them much. When he is at work, I spend my days, painting, napping with the company of two cats. One the cats was a feral cat and now is my buddy. He seems to know when I am having a bad day and from a cat that would not be held, has become my lap buddy. Wow this is depressing. So this is my update....sick, sad, afraid and depressed. The joys of cancer.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    2 Comments
  3. 3
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 3 years ago
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    CT Scan yesterday

    Other Care

    I had a CT scan yesterday to measure if the chemo has reduced the tumors in my lungs. I have been on Treandra and Rituxan every 28 days now for the last 6 months and am one of the 5 percent that has had all the side effects. If the CT scan shows improvement I may be able to get off chemo. I am praying that it turns out that way. This chemo cycle has been the worse. When I had RCHOP and lost my hair it was still easier than this.

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  4. 4
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 3 years ago
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    Relationship issues

    Oh No

    Things are strained with my adult daughters. For the last six months I have been on chemo and having awful side effects. I have not been available to them as I had in the past. Yesterday, a comment was made by one daughter, to stop using chemo as an excuse not to do something. It hurt my feelings. I feel devastated.

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  5. 5
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 3 years ago
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    CT Scan Results

    Procedure or Surgery

    I had a CT scan last Sunday and see my oncologist on this Monday. My Onc. emailed saying that the CT scan came back "fairly normal". I am thinking fairly normal is a good thing and am excited. The chemo was so hard I was not looking for a repeat. Until I see him tomorrow, I will keep my fingers crossed that everything is good.

    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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  6. 6
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 3 years ago
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    Cancer is back/Recurred

    Oh No

    I had the worst CT scan ever on Friday. My veins are not great because of all the chemo over the years. I have been on watch an wait and last week had an appointment with oncologist. I told him that I had enlarged nodes under my armpits and in stomach area and was feeling so tired. Itching on the bottom of my feet and night sweats. He ordered blood test and a CT scan. The next day CT scan was scheduled. I told the tech my veins are not that great and she responded everyone says that. She tried to start an IV on my left arm and after 20 minutes of poking she could not find a vein. On my right arm there is a vein that has a lot of scarring but is usually a good vein. She decided to try it. She poked and it was hurting. She said it was in and I told her, I have had many IV's and have never had one hurt once it is in. She said that it was the best vein and it had good blood return. I should have asked her to find another place but just wanted the test over. She began the scan and when it came down to starting the contrast, it burned and I felt so much pressure. It hurt so bad and she just said to hang on. I have never had a CT scan hurt and tears were streaming down my cheek by the time she was finished. She put a cotton ball and tape on the place where the IV was at. The bandage filled quickly with blood. She changed it again and I said I needed to use the restroom. I noticed in the restroom that there was blood running down my arm. I came out and a lab tech saw me and asked why I was bleeding. I told her I just had a CT and the tech placed a bandage but my arm was bleeding pretty heavily. The lab tech put a pressure bandage and it still kept bleeding thru. She contacted the CT Tech and a supervisor. I was bandaged again and it did not bleed thru. The supervisor said, I think you are going to have a bruise....I looked at her like REALLY???. YA THINK? Waiting for results....hate the wait.

    1 Comment
  7. 7
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 3 years ago
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    Cancer is back/Recurred

    Oh No

    I am beyond sad. My CT Scan results came back that my cancer has come back into my lungs and have some tumors in my stomach area. I start Chemo on Monday. CVT with Rituxan. I had done Treandra last time and it was too hard on me and it did not work well. I can't seem to stop feeling sorry for myself. I have done chemo before but this time it just feels like a punch in the stomach. I have only been married a year and a half and this is the second time I am going thru chemo. I live in a new town far away from friends and family...I am feeling lost.

    1 Comment
  8. 8
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 3 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I had a port place yesterday. My veins are so bad that yesterday during the procedure it took 45 minutes to get a vein in for the IV and they used a baby needle. The procedure for the most part did not hurt, at one point I felt some pain and the surgeon stopped and put more pain meds. The tugging and pulling was disturbing as I felt it and it frightened me. They noticed my anxiety and gave me some more sedatives. I am starting chemo on Monday and am more nervous about that.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  9. 9
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    On Monday morning I start CVP with Rituxan. I am nervous about the side effects as only last May I was on Treandra and had the worst side effects. It has been such a whirlwind since getting the CT results on Tuesday and have been at the medical center each day for a test and then the port placement. I am worried because I came out of remission so quickly. I am quite frankly scared. I have always been strong during chemo, not sure why I don't feel strong this time.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  10. 10
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 3 years ago
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    Oh No

    I am having a Cinco de Mayo Hair no day...Hair is falling out in clumps. Feel like Sloth from the Goonies!!

    0 Comments
  11. 11
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 2 years ago
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    Celebration

    I am celebrating that the CT Scan I had on Monday the 6/16/14 showed that the tumors in my lungs are shrinking after 3 rounds of chemo. The CT Scan showed a lump in my breast, but I am not going to worry about it, hoping that the chemo will take care of that too.

    0 Comments
  12. 12
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 2 years ago
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    Last Chemo is not gonna happen

    Oh No

    I was supposed to have my last chemo tomorrow. It has been almost 6 months. I went to the oncologist today and because I have had the poops for over 10 days and have lost 14 pounds in those 10 days my last chemo has been put off until he can figure out what is going on with me. I was put on a medication to stop the poops, but it has not worked. Each time I eat, it just comes out. My white blood count is really low. I am sad that this is not what I planned. Had hoped last chemo and would be in remission. I am depressed.

    2 Comments
  13. 13
    • kiki95632
    • Experience with Extranodal Marginal ...
    over 2 years ago
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    Remission

    Celebration

    Today is a celebration day!!!!! I was taken off chemo because my immune system was so destroyed I ended up with Eccoli. I lasted 48 days with the poops until they figured out what was wrong and after a a two week dose of an antibiotic I was feeling so much better. My oncologist ordered a CT scan to see when I would begin chemo again and surprise the tumors in my lungs were gone. I am in remission!!!!!!! I am over the moon happy. It has been almost two years of chemo and sickness and to have this break is awesome.

    2 Comments
  14. 14
    • kiki95632
    • Experience with Extranodal Marginal ...
    almost 2 years ago
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    Loss

    My husband died last week of lung and heart failure. I am lost without him. Just did a CT and am on chemo. Feeling like the world is falling apart.

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