Cookie48's Journey with Mantle Cell Lymphoma

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 3 years ago, Female, Age: 73, Stage IV

  1. 1
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
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    Just Diagnosed

    Oh No

    I went to ER because every breath I took produced pain below right rib cage. I was use to bowel obstruction and kidney infections so thought it was one of those but different.Then after a cat scan ,I told I have to see an onocologist right away..really oh no!

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  2. 2
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
    Cookie48's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    I have had implanted lines three times but this was put in slightly offside.Tbe nurse tried to use it the next day , could not get in , it was so swollen tender that tears ran from my eyes.The nurse gave up and explained it's awkwardness. I make sure I number it for chemo as it remains sore to enter.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
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    Bone marrow removal

    Procedure or Surgery

    The light sedation kept me unaware and pretty much oblivious.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
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    Surgery

    Procedure or Surgery

    Removal of lymph node in upper leg. I was surprised by three in incision goin unto my leg.I thought it was a half inch bump in groin.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  5. 5
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Granix to build wbc, the first time ,I felt like my back was being cracked open and was not sure it was not a heart attack. My Dr was oblivious to this pain like totally unheard.I was so afraid of the second time, the first shot barely affected me but they gave me a second shot the next day. It was as if a sledge hammer was striking hip to head.I screamed in pain. We found on the internet people suggesting CLARITON to reduce antihistamines or?? I wear 50mg fentynl patch which did not touch the pain. If I go to Er for bowel obstruction ,the Dr will give me diludid or Demerol as they say fentynl does not touch severe pain,that surprised me but it's true in this case with bone pain of this magnitude. I found after twelve hours I could lay left side,not on back and no sitting as pain vets worse. Some are saying there onocologist prep them for week with Clariton and Tylenol.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
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    Constipation

    Side Effects

    The drugs for nausea plus pain plus other prescriptions contribute to bad constipation.stool softeners4 or more a day plus milk of magnesia 2 T or more but sometimes it still gets bad so enema it is or tears and bleeding occur which is not good. it is a problem when I can not eat my normal salads ,fresh veggies and fruit...One just does not comprehend how dangerous these healthy foods are to this type of cancer.

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  7. 7
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    almost 3 years ago
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    Acupuncture

    Other Care

    because fluid retention is high due to my problems with steroids and hydronephrosis plus lymphdema of arms and leg-doing acupuncture to stimulate some fluid loss and it helps! I feel nauseated a lot due to kidneys so weight loss before chemo was 19 lbs but after it started-54 lbs in 6 weeks!!!

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  8. 8
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    almost 3 years ago
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    Problem with doctor

    Oh No

    My thyroid levels got way off-tsh was 69 when normal less than 4--so dr changes me from synthroid to natural but only 60 mg to replace 275 -add to tired weight gain etc-took weeks to get levels up and right amt into me.

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  9. 9
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    almost 3 years ago
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    Allergic reaction

    Side Effects

    I finally managed to get thru neulasta shot with help of claritin but the little patch/pump was excrutiating unbelievable pain!!!never ever again!!!

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  10. 10
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    almost 3 years ago
    Cookie48's Avatar

    Celebration

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

    1 Comment
  11. 11
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    almost 3 years ago
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    Side Effects

    large weight gain---neuropathy feet but no pain-spinal pain-neckbase like headache with balance problem- sciatica-kidney pain-constipation/nausea

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  12. 12
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    almost 3 years ago
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    Biopsy

    Procedure or Surgery

    visited orthepedic dr and mentioned could not lift left leg sideways-out of car etc--he said the nerve was damaged at groin during biopsy-now I know why I have a new pain.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  13. 13
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 2 years ago
    Cookie48's Avatar

    Other Care

    week later0now 3 tumors growing larger-went to surgeon-order cat suggest cancer as groring too mnay too fast--unable to sleep on either side due to size and paind of tumors-getting scary

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  14. 14
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 2 years ago
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    11-15-18 lump on left hip dr says wait month

    Oh No

    think good thoughts don't research

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  15. 15
    • Cookie48
    • Experience with Mantle Cell Lymphoma
    over 2 years ago
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    pian from lump hurting to kidneys-order ultrasound

    Other Care

    ultrasound shows 15 cm by 9 cm lipo growing fast

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