erie94's Journey with Non-Hodgkin Lymphoma (NHL)
- 1 Loss Icon Loss
- 2 Oh No Icon Oh No
- 3 Side Effects Icon Side Effects
- 4 Procedure or Surgery Icon Procedure or Surgery
- 5 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 6 Side Effects Icon Side Effects
- 7 Radiation Icon Radiation
- 8 Side Effects Icon Side Effects
- 9 Celebration Icon Celebration
- 10 Side Effects Icon Side Effects
- 11 Other Care Icon Other Care
- 12 Clinical Trial Icon Clinical Trial
- 13 Other Care Icon Other Care
Patient: Non-Hodgkin Lymphoma (NHL)
Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 9 years ago, Female, Age: 45, Stage II
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Lost loved one
Loss
My father passed at age 70 only 4 months before my diagnosis.
Diagnosed
Oh No
First diagnosed after three doctors and one month of being diagnosed with a sinus infection and later a Doc added bronchitis. My symptoms were headache, dizziness, trouble breathing, swelling of face when bending over esp. in the morning and waking up with a swollen face. Finally, after much frustration and a visit to the ER, which brought on another misdiagnosis of anxiety, I found an internal medicine doctor. He figured out that "something was pressing/obstructing my SVC of my heart. So an exray and a CT scan later, I was informed I had a tumor in my chest in front of my right lung and my heart. Size: 9.1x9.8x12.1 cm found on OCTOBER 28 2011.
Lymphedema
Side Effects
Lymphedema in the left arm. I wasn't diagnosed until after remission, so during the cancer, I thought it was the SVC syndrome, which causes slow blood circulation from from the head & arms to the heart. I hadn't even received treatment, yet I lived with this terrible condition, so I just coped. My husband tied my left arm to the top of the bed frame to help with the "flow". Now I know that this problem is with me for the rest of my life and that a compression garment helps with the "tight" feeling or swelling, and physical therapy is necessary!!! So, talk to your doctor if you feel any "tightness" in your limbs, so I hear it's common with breast cancer, although it may occur on the legs for others. Just ask!!
Surgery
Procedure or Surgery
Biopsy of the tumor, I still feel pain on the chest muscles when using my right arm. They say it takes a year to heal completely. I'm almost there!!! :D
Chemotherapy
Drug or Chemo Therapy
My lymphodema on the left arm was affected by the chemo. One of the veins running through my wrist is now swollen and is painful now and again to this day. Learned my lesson when skipping meds. Although you're warned, the degree of nausea and dizziness was unexpected. One episode of dizziness lasted 2 hours and my head was in my pilow the whole time. I couldn't move, yet my head was spinning. Ugly feeling!! I'm so glad it's over. God willing, I will never again feel the feeling.
Hair loss (alopecia)
Side Effects
Lost so much hair all at once that my daughter ran to the room in tears! I just shaved the whole thing to avoid watching more fall out. Also, I didn't have to clean up after all the hair falling everywhere. So I killed two birds with one stone!!
Mediastinal-must be internal
Radiation
Felt fatigued mostly, and there's no pain, which was a relief after chemo. Although they say the damage to my heart and other internal organs are a high risk, I feel better that the chances of a recurrence has been drastically reduced with radiation.
Fatigue (tiredness)
Side Effects
Happy that my hair is growing again, but still feel very tired after work, I'm not used to being idle, yet I have no choice.
Remission
Celebration
Although I saw the tumor still present on the scan, and assumed I'd have to repeat the treatment, I was wrong. All I have left is scarring, and I consider it a deflated balloon, cancer free!!!! Plus my hair is growing back!!
Nerve damage (peripheral neuropathy)
Side Effects
Nerve pain is awful! As a kid, did you ever take a size 9V battery to your tongue to see what it feels like? Yes....... multiply that feeling to "various-degrees" and you get nerve pain! Now on meds that feel like I'm ready for a nap, again and again!!
Other Care
This person has yet to add any details about this experience.
Clinical Trial
This person has yet to add any details about this experience.
Ozone Treatments
Other Care
I drive three hours one way to get to Mexicali, MX, in order to receive treatment. This weekly treatment should help the Nerve Damage caused possibly by the radiation. They draw blood and mix it with the ozone (O3) then re-inject it into my bloodstream. If I'm too dehydrated my veins are too small. After Chemo and other injections my veins are pretty damaged. So they perform a rectal treatment. It just feels like you're bloated for a while, then you're fine. This treatment is known to replace chemo and other cancer treatments. I didn't learn about it until after remission, yet so far, it has helped my nerve pain. I'm excited to see if the side effect left by the past treatments is eliminated completely.