Moonflay's Journey with Diffuse Large B-Cell Lymphoma

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

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 5 years ago, Female, Age: 51, Stage III

  1. 1
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Diagnosed

    Oh No

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

    0 Comments
  2. 2
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Bone Marrow test scheduled

    Oh No

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

    1 Comment
  3. 3
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Health insurance issue

    Oh No

    Unable to have tests/procedures done as scheduled due to lack of insurance and an income that is too high. I now have almost no income and have to wait for all the forms to be completed etc....sigh

    1 Comment
  4. 4
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Finally had a MUGA & PET scan

    Procedure or Surgery

    Waiting for results is horrid.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  5. 5
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    bone marrow biopsy

    Procedure or Surgery

    Biopsy with a C/T guided needle. I was given pain meds through IV which were supposed to make me drowsy or even asleep. They did NOT. I was quite awake for the duration. The pain was actually not terrible but the discomfort from positioning (on stomach, hands above head with head and shins on pillows) was terribad! Bleeding through bandage has been rather abundant...grrrr!

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  6. 6
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Diagnosed

    Oh No

    MUGA, PET and Bone Marrow biopsy all completed last week. Today the doc says it's Stage III Large Diffused B-cell Lymphoma. No organs have been affected (still waiting for bone marrow results, if positive, Stage IV), just neck and pelvic lymph nodes. Consultation in the morning to schedule port implant...sigh. Chemo (RCHOP) scheduled for next Tuesday.

    3 Comments
  7. 7
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I was led to believe this particular step would be a walk in the park compared to the bone marrow biopsy. Haha...Apparently my veins are on strike, the last few blood tests have been chaos for both the nurses and myself, both arms look like giant bruises! I had the port implant yesterday. They first attempted to place it on the left side, then went for the right side only to return to the left side. When I awoke from surgery my entire chest was numb. As the local wore off, I found I could lift neither arm beyond bending them at the elbow. The pain in my chest feels like what I imagine a gunshot to the chest must feel like. The site is insanely swollen and painful. I was nauseated yesterday evening finally vomiting like a pro in the end. The hospital supposedly faxed a pain prescription to my pharmacy which never received it. My town closes down by 5pm (gogo small town USA) so I am hoping this will be resolved before noon today since again..no pharmacy will be open until Monday...sigh. I have been on the phone with the hospital (they with the surgeon) numerous times yesterday. Keeping fingers crossed for today. I start chemo Tuesday...this had better improve vastly before then..pain is intense atm! I keep being told that since I am so petite (5'5" 105 lbs.) that intrusive procedures are rougher ....I call BS! Either way...port implant HURTS! :)

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  8. 8
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    No drug approval

    Oh No

    Yesterday, the center called and requested a couple of papers, I faxed them immediately. I show up this morning prepared to start chemo. They take me back and get the needle and IV prep in place in the port then send me in to see the doctor before starting the drip. He informs me that my bone marrow biopsy was negative (Woot! I think, but he seems indifferent, he was hoping for a confirmation on the large b-cell diagnosis since my original pathology was variant). Then he informs me that chemo will start next week instead of today since they failed to get my signature on a couple of forms for the drug companies. Talk about a total psych! Now I have to mentally prep for this again next week and today was a BIG let down!

    1 Comment
  9. 9
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    First chemo was smooth sailing. The dosage my onc started with was fairly small due to my small size so it was decreased by 33%. They gave me something to reduce nervousness which was supposed to make me sleepy...not, lol. I wasn't nervous but I have difficulty sitting still and this makes the nurses nervous, lol. I guess it may have eased the leg bouncing/finger tapping, fidgety movements that stay with me 24/7. No nausea during the treatment and none so far as of the next day. Woot!

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    3 Comments
  10. 10
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    I had the Neulasta shot the day after chemo then returned for a lab the following week. Prior to diagnosis by WBC was around 1.8 to 2.5, just before my fist chemo it was 4.0 and the week after the Neulasta shot it is 8.2 !!!! Bone pain was irritating but Zyrtec during the day and a Benedryl at night helped a great deal! Walking a lot, stretching out and some simple exercises and drinking loads of water helped as well. I had some fairly serious head aches (migraine like) and the onc said to take 2 Advil 3x a day which did seem to take the edge off of them. The headaches only lasted about 3 days..but...grrrrrrr!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  11. 11
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    almost 5 years ago
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    Hair loss (alopecia)

    Side Effects

    Hair is gone but hats are fun!!

    1 Comment
  12. 12
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    over 4 years ago
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    Cancer is shrinking

    Celebration

    PET scan between 3rd and 4th chemo treatment: Scan came back clean! Detailed as patient shows good response to treatment and there were no hot spots on the scan. All previous hot spots are gone! WooT!!!

    0 Comments
  13. 13
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    over 4 years ago
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    Lost loved one

    Loss

    We got a call at 5:15am Saturday morning from the nursing home my father had just moved into a few days prior, he had passed away. I answered the phone at the same time as my mother did and heard the lady make the rather cold announcement then heard my mom lose it. The emotional pain at home is at an all time high at the moment!

    0 Comments
  14. 14
    • Moonflay
    • Experience with Diffuse Large B-Cell ...
    over 4 years ago
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    Finished treatment

    Celebration

    Just completed #8 chemo session. No Neulasta shot after the final chemo..hopefully no bone pain and no infections either, lol. Now if the severe rash that has invaded my neck, chest and back will disappear along with all the chemicals...and perhaps some hair regrowth...sigh. PET scan scheduled for January..need 2013 to be better than 2012!

    6 Comments