LizaNgenye's Journey with Nodular sclerosing

  1. 1 Oh No Icon Oh No
  2. 2 Procedure or Surgery Icon Procedure or Surgery
  3. 3 Procedure or Surgery Icon Procedure or Surgery
  4. 4 Procedure or Surgery Icon Procedure or Surgery
  5. 5 Side Effects Icon Side Effects
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  7. 7 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  12. 12 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  13. 13 Celebration Icon Celebration
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  17. 17 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  24. 24 Celebration Icon Celebration
  25. 25 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  35. 35 Oh No Icon Oh No
  36. 36 Loss Icon Loss
  37. 37 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  38. 38 Celebration Icon Celebration
  39. 39 Procedure or Surgery Icon Procedure or Surgery

Patient: Hodgkin Disease > Classic Hodgkin Disease > Nodular sclerosing

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 5 years ago, Female, Age: 26, Stage III

  1. 1
    almost 5 years ago
    LizaNgenye's Avatar

    Diagnosed

    Oh No

    Date: 4/6/12 Diagnosis: Hogkin's Lymphoma Type: Nodular sclerosing -located in the trachea & other deposits shown in the abdomen. Hospital: George Washington University Hospital Doctor: Dr. Trachiotis (cardio-thorastic surgeon) Oncologist/Hemotologist: Dr. Khaled El-Sharmi Katzen Cancer Center, Washington, DC

    0 Comments
  2. 2
    almost 5 years ago
    LizaNgenye's Avatar

    Biopsy

    Procedure or Surgery

    Procedure: Mediastinoscopy (biopsy) The biopsy went well and recovered well.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  3. 3
    almost 5 years ago
    LizaNgenye's Avatar

    bone marrow biopsy

    Procedure or Surgery

    Procedure: Bone marrow biopsy WORST EXPERIENCE OF MY LIFE ! I have a low pain tolerance and the DR had to use alot of sedation but nevertheless it was a very discomforting experience - I still get chills thinking about it : (

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  4. 4
    almost 5 years ago
    LizaNgenye's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Procedure: Implant port Procedure went well and recovery was much better!

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  5. 5
    almost 5 years ago
    LizaNgenye's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    4/11/12 By the time i was discharged from hospital they said i was anemic so when i started chemo my counts were down to 10.

    0 Comments
  6. 6
    almost 5 years ago
    LizaNgenye's Avatar

    Fatigue (tiredness)

    Side Effects

    4/18 - 4/22 I experienced this for about a week after my first chemo. The first 3-4 days I couldn't even get out of bed : (

    0 Comments
  7. 7
    almost 5 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    4/17/21 1st Chemotherapy Katzen Cancer Center, DC The procedure took 3 hours and the beginning went well. But the end was awful after the Bleomiacin was pushed into my meta port. I started getting light headed, dizzy, a migraine on my right side of my brain, and even worse - nausea! Even though the first 2 hours of the drugs were to prevent nausea i was about ready to throw up. After several requests to my doctor, my nurse gave me Lorazepam/Ativan and that stopped the nausea and calmed me completely. After I felt a "high" from all the drug interactions and later in the evening a burst of energy and alertness that kept me up till 4am.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  8. 8
    almost 5 years ago
    LizaNgenye's Avatar

    Fever

    Side Effects

    4/18/12 Some feverish symptoms after first chemo so I had to take Tylenol because my DR says continual fever would lead to hospitalization. Now im taking Tylenol daily as preventative care.

    0 Comments
  9. 9
    almost 5 years ago
    LizaNgenye's Avatar

    Nausea/Vomiting

    Side Effects

    4/18/12 I felt nauseated right after my first infusion.Then the next day i felt it again. But then i started taking Lorazepam daily in the morning and no more nausea!

    0 Comments
  10. 10
    almost 5 years ago
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    Eating problems (anorexia)

    Side Effects

    4/18 - 4/23 After the first chemo I had a loss of appetite for all foods for about a week.

    0 Comments
  11. 11
    almost 5 years ago
    LizaNgenye's Avatar

    Mouth sores

    Side Effects

    4/19/12 After my first chemo i got mouth sores - i ate cool food and drank liquids to relieve the symptom.

    0 Comments
  12. 12
    almost 5 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    5/1/21 2st Chemotherapy Katzen Cancer Center, DC So far soo good! Was able to walk out of chemo pretty well - no major side effects yet. Took Tylenol and Lorzapam when i got home, ate supper, watched a movie, then went to bed. Feel slightly bloated but after about 15mins felt better. Fingers crossed : )

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  13. 13
    almost 5 years ago
    LizaNgenye's Avatar

    End of Cycle #1

    Celebration

    5/1/12 End of Cycle #1 (2 chemotherapy infusions) Next cycle begins in 2 weeks. Praise God!

    0 Comments
  14. 14
    almost 5 years ago
    LizaNgenye's Avatar

    Mouth sores

    Side Effects

    5/2/12 Today, after my second chemo i my tongue felt heavy and i saw a couple mouth sores forming so im using "magic mouthwash" in the morning and before meals and so far it seems to work...

    0 Comments
  15. 15
    almost 5 years ago
    LizaNgenye's Avatar

    Taste change/loss

    Side Effects

    5/2/12 This morning when i ate my breakfast -oatmeal porridge- it was felt tasteless and almost metallic, i struggled to finnish it.

    0 Comments
  16. 16
    almost 5 years ago
    LizaNgenye's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    5/15/12 Before chemo, I had a blood test, the results showed low white blood counts which is expected from ABVD. Dr. says I should avoid crowds and places with alot of people because im susceptible to infections and such.

    0 Comments
  17. 17
    almost 5 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    5/15/12 Chemo #3 Tolerated it better and was able to walk home (only 3 blocks). When I got home I had an episode- stomach pains, nausea, diarrhea, and heavy perspiration for about an hour. After that I got chills and trembling. After prayer with my mom it seceded and I was able to go to bed. I woke up several times at night and early morning - the steroid kicked in. We'll see how it goes...

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  18. 18
    almost 5 years ago
    LizaNgenye's Avatar

    Fatigue (tiredness)

    Side Effects

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

    0 Comments
  19. 19
    almost 5 years ago
    LizaNgenye's Avatar

    Other

    Side Effects

    TINGING IN FEET Day after Chemo #3 Called the Dr. and he said it is from the Vinblastine, that I should rest and take it easy, it should go away.

    1 Comment
  20. 20
    almost 5 years ago
    LizaNgenye's Avatar

    Hair loss (alopecia)

    Side Effects

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

    1 Comment
  21. 21
    over 4 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    5/29/12 Chemo #3 End of Cycle 2!! :)

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  22. 22
    over 4 years ago
    LizaNgenye's Avatar

    Nausea/Vomiting

    Side Effects

    Nausea and pain in chest and abdomen - sites of lymphomas

    0 Comments
  23. 23
    over 4 years ago
    LizaNgenye's Avatar

    Pain

    Side Effects

    Pain at site of Lymphoma - chest pain

    0 Comments
  24. 24
    over 4 years ago
    LizaNgenye's Avatar

    Remission

    Celebration

    June 11, 2012 Mid-review results show that there are no signs of Lymphoma - CANCER FREE!! In accordance to cancer treatment procedure i will continue to undergo chemotherapy but the treatment term has been reduced to a total of 4 cycles instead of 6 cycles= 2 more cycles/ 4 treatments of chemo remain.

    2 Comments
  25. 25
    over 4 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    6/12/12 After receiving the good news a day before i experienced immediate side effects and struggled to complete the infusion. Side effects include nausea, lightheaded, and pain in my chest from acid reflux.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  26. 26
    over 4 years ago
    LizaNgenye's Avatar

    Nausea/Vomiting

    Side Effects

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

    0 Comments
  27. 27
    over 4 years ago
    LizaNgenye's Avatar

    Pain

    Side Effects

    Acid Reflux. Took Prilosec for a whole week.

    0 Comments
  28. 28
    over 4 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    6/26/12 End of 3rd cycle. 1 more cycle to go! : ) PRAISE GOD!

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  29. 29
    over 4 years ago
    LizaNgenye's Avatar

    Nausea/Vomiting

    Side Effects

    Nausea & Pain from Acid Reflux. After I got home from Chemo I immediately took Prilosec (for the acid reflux) and Lorazepam/Ativan (for the nausea) and put a cold towel on my stomach and chest to relieve the tension- after about an hour was able to rest. NO OTHER SIDE EFFECTS AFTER CHEMO!!! YAY!! :)

    0 Comments
  30. 30
    over 4 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    7/10/12 One more to go!!!

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  31. 31
    over 4 years ago
    LizaNgenye's Avatar

    Nausea/Vomiting

    Side Effects

    Actually threw up gas!! So much gas accumulated in my stomach because of the Acid Reflux.

    0 Comments
  32. 32
    over 4 years ago
    LizaNgenye's Avatar

    Pain

    Side Effects

    Acid Reflux Take Prilosec daily for a month - that helps!

    0 Comments
  33. 33
    over 4 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    8/3/12 Chemotherapy

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  34. 34
    over 4 years ago
    LizaNgenye's Avatar

    Nausea/Vomiting

    Side Effects

    Vomited on 3 occasions on an empty stomach that hurt my stomach lining.

    0 Comments
  35. 35
    over 4 years ago
    LizaNgenye's Avatar

    Problem with doctor

    Oh No

    8/17/12 So my doctor had said that because my PET scan results were unexpectedly good he would reduce the treatments from 6 cycles to 4 cycles. Today we had a doctor's visit and he told us that my case had been discussed by the tumor board and they said that we should continue with the 6 cycles. Yes i'm mad!!! I had already registered for Fall classes and told all my friends and family that i'm done! I'm soo mad i can't explain why we're continuing with chemo... Anyway! I continue Chemo next week.

    0 Comments
  36. 36
    over 4 years ago
    LizaNgenye's Avatar

    My mind/Sense of Humor

    Loss

    So I guess at this point I have lost my mind/sense of humor??? -__________-

    0 Comments
  37. 37
    over 4 years ago
    LizaNgenye's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    09/07/12

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  38. 38
    almost 4 years ago
    LizaNgenye's Avatar

    Finished treatment

    Celebration

    END OF TREATMENT

    0 Comments
  39. 39
    almost 4 years ago
    LizaNgenye's Avatar

    removal of port

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments