jenpwrs' Journey with Mucinous Adenocarcinoma of the Appendix

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Patient: Rare Cancers > Appendix Cancer > Mucinous Adenocarcinoma of the Appendix

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 14 years ago, Female, Age: 40

  1. 1
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Misdiagnosed

    Oh No

    At the time of the appendectomy, the pathologist failed to diagnose the cancer,merely finding acute appendicitis. I was 24.

    0 Comments
  2. 2
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Misdiagnosed

    Oh No

    Nearly two years later, in extreme pain, I went to the emergency room. A few days later I was scheduled to have my gall bladder removed.

    0 Comments
  3. 3
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Diagnosed

    Oh No

    When I woke from this surgery, I still had the terrible pain and knew something had not gone as planned. My sister, who was working in another state that day, was by my bed. Gradually I was told that the gall bladder hadn't been removed because there were "other issues." No one would tell me where the cancer was, which was very hard to understand. Cancer had to be somewhere, right? I learned later that no one could tell me because the answer was "everywhere." The surgeon had seen this cancer only once in his career and the prognosis was two months. Two months! I was sent home with pain meds. It was Thursday. On Monday I was supposed to come back to get a confirmation of the diagnosis from the pathology report. I refused to go because the details didn't seem to matter. My sister and husband went without me.

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  4. 4
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Seeing the oncologist

    Decision Point

    Unknown to me, my sister and my niece had scoured the internet for information on the disease and found a surgeon in DC who performed a radical surgery and interperitoneal chemo procedure specifically designed for this cancer. My sister demanded that my surgeon contact him. He said that the best oncologist he knew was about an hour from there and that I should see him first; he would call this oncologist the next morning. My sister picked up the phone on the desk and told him that she would not leave until he called and had me an appointment with this oncologist. I have no doubt that she meant it. He called, and Dr. Devore said that he would stay late to see me if I could come right away. I locked myself in my bedroom to try to keep from going. My husband removed the door and then removed me from my room. In retrospect, I'm not sure this counts as a "decision" on my part...

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  5. 5
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Hospitalization

    Decision Point

    When I arrived at Dr. Devore's office, he was the only person there. After an examination, he basically confirmed the prognosis and suggested I be admitted there (Knoxville, TN) to get the pain under control. I didn't want to do that. I wanted to be at home. Dr. Devore had previously been with Vanderbilt in Nashville, a very highly-regarded medical center. He said that he could have me admitted there. Perhaps the specialists there could determine some treatment options. My thinking was clearing. I agreed to go. We left immediately. None of us had packed a bag. If we left from Knoxville, we could be there in three hours. Dr. Devore called us as we drove to give us directions and instructions on where to go once we got there. I was admitted quickly & smoothly. The doctors there wanted my pathology slides. My parents brought them. Meanwhile, I was relieved of pain for the first time in a long time. My sister went shopping to get supplies for the three of us.

    0 Comments
  6. 6
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Misdiagnosed

    Oh No

    The Vanderbilt team changed my diagnosis to ovarian cancer. Unfortunately, the prognosis was unchanged and no treatment was recommended. My sister and husband laid in the bed with me and cried.

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  7. 7
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Pursuing Treatment

    Decision Point

    The next morning the lead oncologists at Vanderbilt held a meeting where they pored over my case. The diagnosis was reversed. It was definitely a mucinous adenocarcinoma. My sister (are you noticing a pattern here?) called the surgeon in DC. His nurse was very helpful, but he was in Europe for two months. I didn't have that long. Vandy, however, found a surgeon who also performed the procedure. He had trained for this at MD Anderson but was currently at the University of Cincinnati. It was Tuesday. I could be admitted the next day and have surgery on Friday. I was a year into grad school at this point, i.e. I was poor. I asked my dad if he could get us tickets to Cincinnati. He said that if he couldn't, he would buy a plane! We flew out the next morning. I was admitted and met Dr. Andrew Lowy and his fabulous nurse, Debbie. Dr. Lowy told me that he didn't know if he could help me but that he wanted to try. This was actually the most positive thing I had heard so far. He explained the extreme "debulking" surgery and the heated chemo that would be pumped into my abdomen during surgery. He also wanted to perform this chemo for an additional 5 days post surgery due to the advanced stage of my cancer. I asked if the cancer would return quickly; he said that it would. I didn't want to live like that; I decided against the surgery.

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  8. 8
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Putting my family before myself

    Decision Point

    My family was devastated by my decision. It was impossible to hide the fact. I am extremely close to my sister's 3 children. I am closer in age to even her youngest than I am to her. I guess I'm more like a big sister to them. When I saw how my decision affected them, I agreed to the surgery.

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  9. 9
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Surgery

    Procedure or Surgery

    The surgery took 12 hours. Dr. Lowy removed all visible tumors and involved organs that could be lost. He also stripped the peritoneal lining of the abdominal cavity. Basically he removed my right ovary & fallopian tube, part of my colon, gall bladder, spleen, omentum, and a small part of my liver. The heated chemo was pumped into the cavity and my abdomen palpated for 90 minutes to distribute the drug, which was then pumped out again. I awoke to horrible pain- like a fire had been sown up inside me. I spent the next five days in ICU where the chemo procedure was repeated daily. They wore full contamination suits during the process. Scary and very painful. I also didn't like being alone so much due to restricted visitation for ICU patients. Dr. Lowy felt that he had removed 95% of visible tumor- a truly remarkable feat. On the sixth day, I was moved down to Critical Care. I was allowed drinks for the first time. I had been told that I could go home in 10 days, and I was looking forward to it.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  10. 10
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Complication

    Oh No

    On a Sunday, a nurse noticed my drainage tube turning dark. I started running a high temp. I was given a couple of units of blood. I felt terrible and was in & out of consciousness. A scan showed fluid build-up in my lungs. It was very serious; I was septic. A fistula (communication) had formed between my stomach & diaphragm. My parents had just driven home. They made the 5-hour trip back.

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  11. 11
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Surgery

    Procedure or Surgery

    Pulmonary surgeons did an emergency total pulmonary decortication that night. The lining of my lungs was stripped and chests tubes were inserted. I was also put into a sort of coma for a week to facilitate healing. During this time, the doctors suspected I might have had a stroke and didn't give my family much hope. I remember hearing my sister telling me that I could breathe, which seemed obvious to me. Gallons of fluid were pumped into my body in an attempt to overwhelm the infection. The hole in my stomach & diaphragm had not been repaired due to the extensive surgery I had just undergone. The process of waking up was long and scary. I was very confused and had lost my memory of the last couple of weeks. I had even more tubes now. A nasogastric tube cut into my throat which was also irritated from the week on a ventilator. I laid there for over a month getting regular scans to see if the fistula was healing. No food or drink, a gastric tube pumped out stomach fluid, and a chest tube drained fluid from my lungs, and a feeding tube went into my intestine. I had high fevers every night and developed bed sores.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  12. 12
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Surgery

    Procedure or Surgery

    Finally it was decided that this wasn't going to heal in time. I was down to 85 pounds. Surgery would be attempted. When I was told, I finally cried. Dr. Lowy's partner, Dr. Ahmed, told me that he knew I must think I would never leave there, but he had seen people as sick as me go home. This was the first step toward that. The surgery went well. Learning to eat again was hard. I threw up everything I swallowed. I still had a feeding tube. Then the long incision that ran from my sternum to pubis bone started to open. The wound had to packed everyday with saline-soaked cloth strips in order to heal from the inside out.

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  13. 13
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Homecoming!

    Celebration

    After a couple more weeks, Dr. Lowy thought I should go home. Specifically, he wanted me in a nursing home where I could receive physical therapy and have the feeding tube cared for. Moreover, I needed wound care three times per day, a sterile procedure. Luckily my mother-in-law is an RN experienced in wound care. Dr. Lowy consented to my going home with my care supervised by her. First, however, he wanted me to spend a few days in a hotel beside the hospital to see how things went. A home health nurse saw me there and taught my husband to care for the feeding tube and administer 11 medications through it. I was given permission to go home a few days later. Businesses in my small town had put up signs and balloons welcoming me home. Although I had to live with my parents for a few months in order to be constantly supervised, it was great to be there after 2 months in a hospital. Eventually I managed to keep down a couple of tablespoons of food at a time.

    0 Comments
  14. 14
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Dr. Lowy recommended my old friend Dr. Devore for follow-up care. Boy, was he surprised to see me! He put me on a chemo pill, Iressa but told me that I could not go to school that semester. In retrospect, that was painfully obvious.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  15. 15
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Back to School

    Celebration

    By January I wanted to get back to school. I was up to 95 pounds and had a wig to cover up the hair loss from so much anesthesia and malnutrition. I found an apartment and moved back by myself, as my husband worked in our hometown. It was tough being alone so much after all the trauma, but I loved being back at school. It was a good distraction. I read Lance Armstrong's book and felt some better. I taught lab classes. Everyday after classes I would soak my feet in warm water until I could peel off my blood-soaked socks. The Iressa caused my toes to seep blood all day. Walking was miserable, and the parking lots were in Egypt. Still, I was happy.

    0 Comments
  16. 16
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Cancer is back/Recurred

    Oh No

    In February, the cancer was back. We decided to delay treatment as long as possible. My professors helped me to finish my courses early. I didn't really care because I thought it was pointless. The head of my committee, however, was very dedicated to my education. I completed my third semester of graduate work in biology.

    0 Comments
  17. 17
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I started treatment in May. 5-FU, Leucovorin, Oxaliplatin, and Avastin. The Oxaliplatin was supposed to be for six months. It causes everything to taste like metal and neuropathies in hands and feet. Cold drinks are terrible. I rarely got out of bed except for treatment every week.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  18. 18
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

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

    0 Comments
  19. 19
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Mouth sores

    Side Effects

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

    0 Comments
  20. 20
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Flu-like symptoms (fever, chills, sweats)

    Side Effects

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

    0 Comments
  21. 21
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

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

    0 Comments
  22. 22
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Anemia (low red blood cell counts)

    Side Effects

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

    0 Comments
  23. 23
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Fatigue (tiredness)

    Side Effects

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

    0 Comments
  24. 24
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Eating problems (anorexia)

    Side Effects

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

    0 Comments
  25. 25
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Depression/Anxiety

    Side Effects

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

    0 Comments
  26. 26
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Bleeding

    Side Effects

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

    0 Comments
  27. 27
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Implant chemotherapy port

    Procedure or Surgery

    After a few treatments my veins gave out. I was so scared to have the port implanted because surgeries had been so tough the previous year. It was no big deal and vastly improved the ordeal of blood work and treatment.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  28. 28
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Infection

    Side Effects

    About a year into treatment, I started running a fever one day. I thought I had the flu. I was prescribed antibiotics but kept getting worse. On the fifth day, I was hospitalized. My port was infected, and I was septic (again).

    0 Comments
  29. 29
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Pulmonary Embolism

    Oh No

    A few months into treatment, I began to really struggle to breathe. During chemo, my nurse became concerned and called Dr. Devore because she suspected a blood clot. I was sent immediately for a scan. I was annoyed. My parents had to drive me to Knoxville, and there was a big snow. On my was home from the scan, my nurse called and told me to go back to the hospital. I had a pulmonary embolism. I had heparin shots daily in my stomach for a week and started coumadin.

    0 Comments
  30. 30
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Port removed

    Procedure or Surgery

    The infected port was removed, and I stayed in the hospital on antibiotics with a line into my neck until I was well enough for a new port.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  31. 31
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Implant chemotherapy port

    Procedure or Surgery

    On the ninth day I got a new port and went home. Of course, the incision opened a few days later. Thankfully, it was small, but I had some minor wound care.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  32. 32
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Cancer is shrinking

    Celebration

    Through treatment, scans showed the cancer stable but not shrinking. This was disappointing, but my dad said that it was great news because it's common sense that something has to stop growing before it can shrink. He always has been an optimist! In November I had a scan as I did every two months. When Dr. Devore came into the room, he told me that there was no cancer visible on the scan. This rather serious man was downright giddy. I couldn't take it in. I kept saying, "But it's bad in my abdomen, right?" or "It's bad in my pelvis, right?" He couldn't quit laughing at me. Unfortunately, he thought I should continue treatment. There is no such things as remission at this stage of this disease. I called my sister at work to tell her the good news. She kept yelling for me to tell her again and again. At nine months of treatment, I stopped Oxaliplatin because of side effects. The other drugs were much easier, and my energy and weight improved. Time went by. After a couple of years, I dropped the 5-FU and Leucovorin and remained on Avastin, an antigenesis drug with few side effects. The nurses had a party for me on my 100th treatment. During this time I made several close friends in the chemo room. This support improved my mental health more than anything. I found a place where I fit in, even if most of the people were 30 years older than I. After 41/2 years, I stopped Avastin as well.

    0 Comments
  33. 33
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Back to School? Again?

    Decision Point

    My professor had been encouraging me to come back to school. Free from treatment, it was possible. I was used to living expecting to die any minute. Making future plans seemed silly and was scary. Really, I didn't want to have to pack my things up and come home for a third time. I had started seeing a therapist. Years of illness and treatment were too much for me alone. She helped me make the decision to go back to school. It would take two semesters to finish the courses and write my thesis. I felt out of place this time, but I loved having a purpose again.

    0 Comments
  34. 34
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Cancer is back/Recurred

    Oh No

    As I started my thesis during the second semester, the bad scan came. Dr. Devore thought another surgery was the best option if I was willing to go through that again. I was terrified of more complications and the pain involved. Dr. Lowy had moved to the University of California, San Diego. He agreed with Dr. Devore. My wonderful professor came through again, getting an extension for me to complete the thesis while I made decisions about my health.

    0 Comments
  35. 35
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Graduation, Finally

    Celebration

    I defended my thesis and graduated in December 2009, six years after I started.

    0 Comments
  36. 36
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Surgery

    Procedure or Surgery

    We had put surgery off as long as possible. I flew to San Diego and had the debulking/intraperitoneal chemo in April. Dr. Lowy removed quite a bit of colon, my remaining ovary & fallopian tube, and the peritoneum. It was as painful as I remember, and there was a scary day when we thought I had another infection. After a few days in ICU, I was sent to Critical Care. After about seven days, I was allowed food and water. It went about like before. I couldn't keep anything down. Eventually tubes were removed and after 10 days I was released to a hotel for a few days before Dr. Lowy allowed me to fly back to Tennessee. Recovery took about three months. During this time, my incision opened (again), and I had wound care for four months.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  37. 37
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Life

    Celebration

    After recovery, I went back to the raptor center I had volunteered at for three years. This place had been my saving grace. Located at the top of a beautiful mountain in a huge wooded park, I used my education to care for unreleasable birds of prey and educate the public on their importance and on conservation. It's impossible to worry up there. I also moved to a home deep in the woods overlooking a river. Nature is a huge part of my life.

    0 Comments
  38. 38
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Cancer is back/Recurred

    Oh No

    Within several months, the scans were bad again. I started a tough drug in November, CPT-11, as well as the trusty Avastin and an oral chemo- Xeloda. The first dose of CPT-11 nearly killed me. Dr. Devore halved the dose but took it away completely after a couple more treatments. My hair was gone, and I was sickly. I have improved since stopping CPT-11. My hair is growing back. The scans are stable. I will stay on theses drugs until it starts to grow again. Then I will decide whether to try CPT-11 again.

    0 Comments
  39. 39
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Fatigue (tiredness)

    Side Effects

    The major thing I deal with right now is extreme exhaustion (plus Hand and Foot Syndrome). My energy is very low. This seems to be due to the cancer rather than the drugs.

    0 Comments
  40. 40
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Nausea/Vomiting

    Side Effects

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

    0 Comments
  41. 41
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Eating problems (anorexia)

    Side Effects

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

    0 Comments
  42. 42
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Hand foot syndrome

    Side Effects

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

    0 Comments
  43. 43
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Hair loss (alopecia)

    Side Effects

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

    0 Comments
  44. 44
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 3 years ago
    jenpwrs' Avatar

    extreme fatigue for months, rarely out of bed, unable to stand

    Side Effects

    on this regimen for two years at that point

    0 Comments
  45. 45
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 3 years ago
    jenpwrs' Avatar

    diagnosed with autonomic disorder

    Oh No

    Likely caused by oxaliplatin taken during my second year of cancer. This has affected my life as much as cancer.

    0 Comments
  46. 46
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Flu-like symptoms (fever, chills, sweats)

    Side Effects

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

    0 Comments
  47. 47
    • jenpwrs
    • Experience with Mucinous Adenocarcinom...
    about 5 years ago
    jenpwrs' Avatar

    Fatigue (tiredness)

    Side Effects

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

    0 Comments