Hesaidshesaid's Journey:

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Mantle Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 6 years ago, Female, Age: 55, Stage III

  1. 1
    over 4 years ago
    Hesaidshesaid's Avatar

    Cancer is back/Recurred

    Oh No

    I had a few lumps behind my ear they didn't hurt , I didn't think much of them. The reason I started going to the doctor was there was some kind of bug biting me all over and the place would swell up and look like a water blister. The doctors would give me antibotics and after a few weeks would go away. But of course there would be more places to follow. I think it is mesquitos, anyway went to the determologist and that was when I mentioned the bumps behind my ear. He immediately sent me back to my doctor and my journey began: CT scan, onocologist, surgery to take a lympnode out. surgery to put a port in. Started chemo did 6 rounds, lost my hair. Needle biopsy of my thyroid, surgery to take my thyroid out. Pet scan. Cancer still there but smaller, we will watch and see. Pet scan. Cancer growing again. Chemo again. Did 6 rounds of another mix. Pet scan. Cancer gone. Went to see a bone marrow doctor. We decided to wait and watch. Three months later another Pet. Cancer back. Onocologist decided to do 3 more rounds of chemo and then bone marrow.

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  2. 2
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    This was not bad at all.

    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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  3. 3
    over 4 years ago
    Hesaidshesaid's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The 1st two rounds of chemo, I did get sick. The 1st one had a really bad headache for about 1 1/2 weeks. Tired. Bones hurt about the third day after chemo. The 2nd round, got sick throwing up, not sure I did not have a virus. I kept working all through chemo. After the 2nd round I did not get sick . I was tired. I would come in from work and just sit most afternoons. When the cancer came back and I had to do more chemo, this mix was not bad. Still worked. Did not get sick and did not lose my hair. My job is not a hard job, I get to sit, have to stand some. I know it depends on the type of work you do if you can continue to work. Don't push yourself, you need all your strenght.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    over 3 years ago
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    Hospitalization

    Other Care

    Well I had a bone marrow transplant in Nov. 2012 . Feel good now. Had my first pet scan May 2013 got the results June 2013 and found out it is still there. It is small but has grown a little since my last pet scan Oct 2012. What's next , I don't know . My oncologist will talk to my bone marrow doctor and see if they want to play the wait and see or more chemo or what. Has anybody else gone through the bone marrow transplant and still have mantle cell ? If so what treatment did you do?

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  5. 5
    over 3 years ago
    Hesaidshesaid's Avatar

    Drug or Chemo Therapy

    Going through the bone marrow transplant, was hard. I was in the hospital 3 1/2 weeks. I started getting sick when they were trying to get my bone marrow out. They give you a shot that makes you produce more bone marrow, the shot made me sick, headaches, weak etc. Most people do not react like I did. They had to put me in the hospital early. I was dehydrated, weak, throwing up etc. I was in the hospital a couple of day's started feeling better. Started chemo it was not to bad. The chemo does not seem to affect me but the medicines and shot does. When all my #;s started going down, (this is what it is suppose to do, all your count go to 0 and then start climbing again) so did I. I was very weak, didn't feel like doing anything. Getting off the bed and walking to the couch in the room took so much energy. I would make my self take a shower everyday, which would pretty much do me in until the evening. My sister stayed with me the whole time would not leave the hospital for anything. I really glad she did as I was too sick to take care of my self. I had to get blood transfusions and platelets a few times. I started running a fever so they started giving me antibotics just in case I had an infection. Thank goodness I did not. When I got out of the hospital Dec. 2012 I was still very weak. I would go to Wal Mart and could not walk to long before I would have to leave. I pushed my self to get my strength back. I went back to work Jan 2013 and thought everything was great. Until my pet scan and results. Still feel ok. Just not sure what I need to do next.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment