MzJT's Journey with Hodgkin Disease
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 4 Radiation Icon Radiation
- 5 Celebration Icon Celebration
- 6 Oh No Icon Oh No
- 7 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 8 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 9 Celebration Icon Celebration
- 10 Celebration Icon Celebration
- 11 Oh No Icon Oh No
- 12 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 13 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 14 Side Effects Icon Side Effects
- 15 Procedure or Surgery Icon Procedure or Surgery
- 16 Clinical Trial Icon Clinical Trial
- 17 Oh No Icon Oh No
- 18 Celebration Icon Celebration
- 19 Celebration Icon Celebration
- 20 Oh No Icon Oh No
Survivor: Hodgkin Disease
Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 14 years ago, Female, Age: 31, Stage IV
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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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Diagnosed
Oh No
After 4 months of loss of appetite, lack of energy, weight loss of 30+ pds, and constant fever and chills, I was finally diagnosed with Hodgkin's Lymphoma. I was of course scared. At the time I can honestly say I was more relieved than anything else. After months they finally knew what was wrong and it was concrete enough to try and fix it.
Biopsy and Picc line
Procedure or Surgery
They did a biopsy on the lump they found in my neck on the left side and insterted a pic line in my arm, since I couldn't lay flat and breathe at the time. My asthma was HORRIBLE!
Chemotherapy
Drug or Chemo Therapy
I went through five, 21 day- cycles of chemo. I had minimal nausea and vomiting until the last two months and only 1 blood transfusion.
External radiation
Radiation
Radiation was breeze for me. The worst that happened was extra dry skin and of course the uncomfortableness of having a nude chest for those 14 days (my masses were in the chest and stomach area).
Finished treatment
Celebration
YAY! I was cancer free! Right in time for my freshman year of college! My hair grew back and I enrolled to start classes for the upcoming winter semester.
Cancer is back/Recurred
Oh No
6 months into re-mission and I find its back and worse than before. They immediately put in a port and start Chemo
Chemotherapy
Drug or Chemo Therapy
They called this chemo regime ICE. I was hospitalized while they gave it to me so about once a month for 3-5 days I was stuck in a isolated hospital room. This chemo was especially harsh, but I think I weathered it well.
Bone Marrow Transplant #1
Drug or Chemo Therapy
The doctors were able to harvest my own stem-cells. I was hospitalized for 30 days. I went thru a XXX of alot of chemo b4 the transplant so they could kill off all the cancer they could b4 giving me a "new" immune system to do the rest. It was harsh, i'm not gonna lie. I had mouth sores for weeks, lost alot of weight and had a lot of downs. But getting it done at Children's Hospital of MI helped. It was always someone there to cheer me up!
Birthday
Celebration
I get out of the Hospital the same day as my 19th birthday! Yay ME!!!!! All the Ice cream cake I can eat! ^_^
Remission
Celebration
WHoooo HOOOOOO! The transplant worked! No more Cancer on the scans!
Cancer is back/Recurred
Oh No
Man WTF?! 4 months l8r and an early form of Leukeumia is showing up along side the Hodgkins Lymphoma that we thought was gone for good last time. Smh. Here we go again.
Chemotherapy
Drug or Chemo Therapy
This chemo was fairly easy. It was just used to help keep the cancer from spreading or growing larger while I awaited a donor for the second bone marrow transplant that was needed. It was done every Tuesday for a few months. Most annoying thing was that I was constantly getting blood and platelet transfusions. At the least one or two a week.
Bone Marrow Transplant #2
Drug or Chemo Therapy
Ahh! Even after my live donor backed out only 2 wks b4 the procedure, my docs were able to find an umbilical cord large enough to possibly get my immune system back to working order. The main reason why this transplant is so important was because my body was no longer producing the right blood cells. At this point the cancer wasn't exactly numero uno. Anywayz this time I was in the hospital for 61 DAYZ!!!! Geesh I was going crazy in there. Again being at CHM really really really helped!
Anemia (low red blood cell counts)
Side Effects
Because of the 2nd transplant, I couldn't receive any treatment to get rid of the cancer until my body recovered. Which took a good couple of months after I was released from the hospital.
Lung Biopsy & Removal of mass near lungs and heart
Procedure or Surgery
This was prolly one of THE worst things we could've done at this point. Along with the large masses between my heart and lungs there was a mass IN my lungs but the docs couldn't tell if it was scar tissue from radiation or if it was spreading. We decided a biopsy would be the best way to figure out and that we could remove some of the cancer when they went for the biopsy. Smh. My lungs were already not at their best, after this surgery the upper lobes of both are completely scarred AND they failed to remove ANY of the cancer because it was too close to the main vein of my heart. #EpicFail!
SGN-35
Clinical Trial
I was transferred to Karmanos because Children's did not have this trial available. It was one drug, that took about an hour to get. The side effects were very minimal, my hair even grew during the process. I got this drug for a yr.
I'm going to die?!?? WTF?
Oh No
So they want me to have another transplant, because they don't believe the clinical trial is going to put me remission. It was a very small chance that it would be successful and an even higher chance that'll I would come out of the process a lil more fck'd up than b4. But the kicker was they believed that if I didn't do the transplant then the cancer for sure was gonna kill me, soon. Pssh fck that! I said give the trial a few more months and if its still not going according to plan we'll rethink our game plan.
Remission
Celebration
I went into remission from the clinical trial in 2010. The docs say the drug was not supposed to put me in remission. Although the docs don't believe this is a true remission, I do. So far no one has been in remission for longer than 2 yrs from this drug alone. Hopefully they're wrong, again. Lol. Anwayz it is now 2012 and i'm still in remission (which is a record for me)!
I finally started college!
Celebration
I started my life again! Lol. I finally enrolled AND started my classes @ a local community college, till I transfer to WSU where I become a Physical Therapist. Wish me luck guys. ^_^
Lungs are completely fck'd!
Oh No
So, you know all those long term effects they say you could get from treatment that usually shows up yrs later? Yeah mine showed up not even a yr into remission. I am now on oxygen and I found out recently that I can not have children. :sighs: At least I'm alive. I may not be able to minor in dance anymore, but I can still do other things. And when I am ready for children I could always adopt. There are hundreds of kids looking for a good home. I can definitely be that for them, when I'm ready.