Nerry's Journey with Squamous Cell Carcinoma, Oral Cavity ...
- 1 Oh No Icon Oh No
- 2 Side Effects Icon Side Effects
- 3 Procedure or Surgery Icon Procedure or Surgery
- 4 Decision Point Icon Decision Point
- 5 Celebration Icon Celebration
- 6 Oh No Icon Oh No
- 7 Procedure or Surgery Icon Procedure or Surgery
- 8 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 9 Side Effects Icon Side Effects
- 10 Procedure or Surgery Icon Procedure or Surgery
- 11 Radiation Icon Radiation
- 12 Celebration Icon Celebration
- 13 Side Effects Icon Side Effects
- 14 Procedure or Surgery Icon Procedure or Surgery
- 15 Oh No Icon Oh No
- 16 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 17 Side Effects Icon Side Effects
- 18 Side Effects Icon Side Effects
- 19 Side Effects Icon Side Effects
- 20 Procedure or Surgery Icon Procedure or Surgery
- 21 Oh No Icon Oh No
- 22 Procedure or Surgery Icon Procedure or Surgery
- 23 Side Effects Icon Side Effects
- 24 Side Effects Icon Side Effects
- 25 Side Effects Icon Side Effects
- 26 Side Effects Icon Side Effects
- 27 Oh No Icon Oh No
- 28 Side Effects Icon Side Effects
- 29 Celebration Icon Celebration
- 30 Procedure or Surgery Icon Procedure or Surgery
Spouse/Partner: Head & Neck/Throat Cancer > Oral Cavity and Oropharyngeal Cancer > Squamous Cell Carcinoma
Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 10 years ago, Male, Age: 46, 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
I couldn't believe this was happening to my husband. He had had pain in his tongue for over a month. He thought it was an ulcer and we went to a surgeon who offered to remove it. The pathology report then came positive.
Taste change/loss
Side Effects
This person has yet to add any details about this experience.
Surgery
Procedure or Surgery
After the results of the initial biopsy came out, my husband underwent surgery in which part of his tongue was removed, along with the lymph nodes. The surgeon had to remove a proper safety margin after the biopsy. The surgery itself went smoothly; however the side effects and the impact to daily life were a huge shock to my husband and I.
Radiation or no radiation
Decision Point
The surgeon said that he didn't think that my husband needed radiation. We sent all medical reports and history to IGR in France and they seconded the opinion of the surgeon, with a recommendation for close follow up after 3 months. We also sent them to the US to a friend who sent it to a doctor there. The doctor thought we should do Radiation. We sent them to Germany and they thought we should remove the lymph nodes on the other side as well. Finally we decided to take the surgeon's and IGR's opinion and we didn't do anything.
Finished treatment
Celebration
We thought that treatment was finished at that stage
Cancer is back/Recurred
Oh No
My husband started experiencing pain again. We saw the surgeon and he said it was normal after such surgery. 2 weeks later when the pain increased we visited the doctor again and he recommended a Fine Needle Aspiration. The results were negative; however he said he wasn't confident about the results. We travelled to Paris, IGR, and met with the surgeon there. He confirmed that the cancer was back. He recommended an aggressive course of treatment: Chemo therapy followed by surgery followed by Radiation concurrent chemo therapy. We went back to Egypt to start Chemo therapy. The medical oncologist there convinced the surgeon in Egypt to have a biopsy first because he was had doubts that it was back. My husband agreed to do the biopsy, which turned out positive. He then started the chemo treatment, but unfortunately he acquired a fistula
Implant chemotherapy port
Procedure or Surgery
This person has yet to add any details about this experience.
Chemotherapy
Drug or Chemo Therapy
My husband acquired a fistula, so we decided to go back to Paris to resume treatment. In addition to the usual side effects of chemo therapy; nausea, hair loss, fatigue and fever there was the complication of managing a fistula.
Nausea/Vomiting
Side Effects
In addition to the usual side effects of chemo therapy; nausea, hair loss, fatigue and fever there was the complication of managing a fistula. Everything he ate through the mouth went through the fistula.
Feeding tube (gastrostomy)
Procedure or Surgery
he had to depend on a feeding tube until the fistula healed and he was able to eat through his mouth again. 3 weeks later the fistula recovered and he was able to eat through his mouth; however the doctor recommended to keep the tube because of the side effects of surgery and radiation.
External radiation
Radiation
After he finished chemo therapy. He did a PETCT. The doctors told us he responded very well to the treatment that they choose not to proceed with surgery, because it's huge and will have a great impact on his life. They chose to proceed with Radiation. He had a total of 35 sessions spread over 7 weeks. He didn't feel much during the first 2 weeks.
Finished treatment
Celebration
We were excited that the treatment was over and were so eager to go back to our country. We had been in Paris for 4 months.
Saliva changes (thick saliva)
Side Effects
Unlike the chemo therapy side effects, unfortunately the side effects of Radiation are permenant. Swallowing problems and mouth dryness are the main side effects of Radiation. His speech is slurred as a result.
removed the gastrostomy
Procedure or Surgery
This person has yet to add any details about this experience.
Cancer is back/Recurred
Oh No
One month later, my husband started experiencing pain again. we did a CT and MRI and we sent the results back to Paris. They told us to go back to the IGR because they needed to do a biopsy, because they had suspicions the cancer was back. We did another FNA that proved to be positive again. The surgeon confirmed that surgery was inevitable.
Chemotherapy
Drug or Chemo Therapy
He started chemotherapy to control further growth of the tumor.
Depression/Anxiety
Side Effects
He started experiencing panic attacks for fear that the cancer was back. When we went back to Paris, we met with a psychiatrist at IGR and he started taking strong anti depressants.
Flu-like symptoms (fever, chills, sweats)
Side Effects
He had a fever of 41 degrees and was hospitalised for 3 days trying to manage the fever
Pain
Side Effects
unbearable pain. he was on very strong pain killers that made him sleep almost all day and night
Surgery
Procedure or Surgery
It was a huge surgery, lasted for around 11 hours. They removed part of the mandible, tongue and all his teeth on the right side and they did reconstructive surgery as well. They took bones and muscle flaps from below his left arm. He had to stay at the hopsital for 5 weeks.
Will they be able to do the surgery or not?
Oh No
The intern at the hospital told me that the tumor was very close to the artery and there was a very high chance the doctor will not be able to proceed with the surgery. At that time my husband was in so much pain he was sedated and didn't hear what the intern said. I tried to reach the surgeon but it was around christmas time and I wasn't successful. 2 weeks later, 5 days before the surgery, my husband was hospitalised because of very high fever and the surgeon passed by. He explained that the MRI showed that the tumor was very close to the artery. He was going to start the surgery by trying to remove the tumor away from the artery. If he was successful he would continue with surgery, if not then he wont continue. In that latter case, there wouldn't be anything they could do and my husband would only have a few months to live!
Ryle Feeding tube
Procedure or Surgery
He had to depend on the ryle for 2 weeks before they fixed him a gastrostomy as it turned out that he needed it for the following six months.
Confusion
Side Effects
He was so confused when he was waking up after surgery. He thought he died and they put him in a plastic bag. He tried to get up, which was very dangerous for him so they had to tie him to the bed. This made things worse for him
Pain
Side Effects
The pain was so strong. He was using a morphin "cassette" as they called it. It was a device that connected to the port and every time he felt pain he pressed a button and the morphin was injected immediately.
Swelling (edema)
Side Effects
His whole face was swollen. it gradually decreased in size over 2 months.
Depression/Anxiety
Side Effects
This person has yet to add any details about this experience.
Good news the cancer was removed... bad news there's a high chance it will come back
Oh No
The following day after surgery, the surgeon asked to meet me. He told me that he was able to remove the cancer and the surgery was a very difficult one. There was a very high chance it will come back.
Rejection of transplant
Side Effects
during the first 2 weeks after the surgery, the outer skin of the flap turned black.
Finished treatment
Celebration
after 5 weeks, he was dismissed from the hospital, with recommendation of close follow up after 1 month. We had to remain in Paris for fear that there would be any further complications
Surgery
Procedure or Surgery
3 weeks after surgery, he had to do another skin graft. This time they took the skin from his thighs. It took his thighs 4 months to heal and left a large scar.