UCSF recommends radiation treatments for Sandy's sinus.
After researching radiation treatments for the prevention of melanoma returning to her sinus Sandy has decided to refuse them.
She will reevaluate her decision after having her next PET/CT scan in May 2014.
PS As of June 2017 Sandy has never had another PET/CT scan. In December 2015 she went back to Dr. Drury office because of sinus pain and he discovered that her tumor had grown back even larger than before. In January 2016 Dr. Drury removed another melanoma tumor from her right sinus. At a follow up appointment in April 2017 Dr. Drury could find no sign of the tumor. He still recommended another PET/CT scan, but at that time she decided not to have another one because, even if it showed the melanoma had metastasized, she was not going to under go radiation or chemotherapy.
Sandy had a full body PET/CT scan on January 23, 2014. You can see what this involved by going to this site: http://en.wikipedia.org/wiki/
She received the all-clear results on January 30th at an appointment with Dr. Drury the ENT doctor who removed the melanoma tumor from her sinuses.
Dr. Drury and the doctor she has been seeing for her osteomyelitis of the jawbone for the past 13 years (Dr. Tufft) decided she should go to an oncologist at The University of California at San Francisco (UCSF) for a follow-up/second opinion as USCF has a Melanoma Clinic with an ongoing melanoma study.
Sandy's appointment at UCSF is on February 18, 2014.
Dr. Drury told us that since the scan was clear of cancer, the oncologist probably won't recommend that she have chemotherapy or radiation.
This was good news because Sandy doesn't want any of that.
Today Sandy went to her follow-up appointment with the ENT doctor.
His news was not good. The mass he removed from Sandy's sinus was malignant. We were stunned. He said it was melanoma, which is very rare in mucous membranes.
So, he gave her a prescription for a full body scan, which is to try to detect if she has melanoma anywhere else in her body (her appointment for that is next Thursday, January 23rd). Then he will see her again to discuss the results of the scan and refer her to an oncologist.
He told us the oncologist would either just watch her to see if anything else shows up or she could be scheduled for chemotherapy and radiation treatments.
On December 17, 2013 Sandy had a large polyp, which was shaped like a peanut shell, removed from her sinuses. The doctor said it was in the far back area of her sinuses and it was completely blocking the right side and partially blocking the left side, which, according to the doctor, was blocking her lymph and was the cause of her breasts being swollen. Since then, the swelling in her breasts has decreased so much she says she’s amazed at how much better her whole body feels (the feeling she had before was like she had an inflated inner-tube wrapped around her chest).
Sandy has been telling me about this feeling since she had a hysterectomy in November 1997 (16 years ago).
Dr. Clark explained to Sandy in 2001 that having a hysterectomy was the cause of the swelling of her breasts because before her hysterectomy a pathway had been established to send the toxins from the hidden infection in her jawbone (see next paragraph) to her ovaries (which was causing the endometriosis, which was the reason for the hysterectomy) and, when her ovaries were removed, the pathway changed and went to her breasts. Dr. Clark also explained that since the pathway to her breasts was now established any other toxins released from an infection in her body would follow the same pathway.
Sandy’s problem began with a hidden infection called osteomyelitis (infected bone) in her jawbone which was caused by taking tetracycline at age two, which discolored and weakened her permanent teeth that were in the process of developing in her jawbone, and, being hit under her jaw in a swimming pool accident at age nine, which caused fractures from the crown to the tips of the roots of several of her molars.
Unbeknown to Sandy an infection from the fractures of the roots gradually caused both osteomyelitis and osteonecrosis (dead bone) in her jawbone, which caused toxins to drain into her body. (Note: Sandy had several endometriosis operations between the ages of 18 and 30 before she had her hysterectomy in 1997 at the age of 36. In the screening of a video of one of those operations we saw drooping strings of what looked like pearl necklaces, which the doctor called endometriosis material as he removed them with a laser.)
By January 2001, three years after her hysterectomy, Sandy was in so much pain and so swollen she thought she was dying, but her Washington state dentist, who had removed three molars after trying to save them with root canals that failed, did not realize she had osteomyelitis/osteonecrosis.
It was after she came to live with me, her mom (Bonnie) and Dale in March 2001 that she was diagnosed with osteomyelitis/osteonecrosis of the jawbone (this was in September of 2001 after seeing several doctors and dentists and having had several more teeth removed). Between September 2001 and September 2009 she had all of her teeth removed and multiple jawbone scrapping surgeries and dead bone removal surgeries (during the surgery in September 2009 the dentist said he had broken through into her sinus area as he was removing dead bone).
Now, with both the infection and the polyp gone we believe the lymph nodes in Sandy's breasts will be able to go completely back to normal. (Update: This did not happen, in December 2015 the tumor was discovered to be back and she had another operation to remove an even bigger tumor than the first one in January 2016, which was also melanoma.)
Sandy is so much better we think she may be back to normal. Her color is better, her eyes are sparkly and her personality is way more cheerful than it has been in 12 years.
We go back to the doctor tomorrow for her third post-op check-up (the day after the surgery he decided not to remove the packing, so he took out the packing on the 20th and there was no bleeding and it looked good). We will get the results of the culture tomorrow. The "mass" as the doctor called it, was the size of a whole peanut in the shell. It blocked the right side of her sinus and part of the left side and was way in the back. He showed us on a huge poster-sized picture of the sinus area.
What Sandy likes best that has improved since the operation is that her breasts are not as swollen. She keeps showing me her neck where the swelling has gone down (now there's a crease in her skin where it used to be swollen). All the swelling is reduced.
Sandy is home and resting after her operation to remove a polyp or mass in her right sinus.
She was in the operating room for two hours and I waited in the waiting room.
The doctor will talk to us tomorrow morning at her post-op appointment.
When I first got to see her she immediately said "I feel better already."
This could be because she was sedated or, it could be because her lymph is now able to drain normally. The doctor told us at her pre-op appointment that her sinuses are a big part of the lymph and the mass was definitely blocking her lymph.
Dale took a picture of her tonight:
The gauze is to catch the blood that might drain out of her right nostril tonight.
When antibiotics did not clear up Sandy's sinus infection and/or the bloody mass in her sinus her doctor sent her to have a CT scan of her sinuses. The scan showed a mass (polyp or cyst) in her right sinus and Sandy was referred to an Ear Nose and Throat (ENT) specialist.
Sandy is scheduled for surgery on Tuesday morning (December 17, 2013) with her ENT doctor. She and I spent all day Friday at the doctor's office in Oakland and at the hospital, up the street from the doctor's office, getting her pre-op check-up and an EKG taken and her blood drawn.
The doctor said if there is any infected bone in her sinuses he will remove it. The operation is supposed to be just for the removal of a polyp, but, once he is in there he will do whatever needs to be done. (He told us what he has had to do in other cases: go in through the mouth and up numberswiki.com
to the sinuses to remove infected bone.)
She will have packing in her sinuses for three days, and she has to go back to see the doctor the next day for a post-op check-up and again on the 26th.
Until Tuesday of last week, when she finished her fourth course of antibiotics, she had been taking very strong antibiotics for six weeks and the doctor told her not to begin taking her refill as he wants to send the polyp out to be cultured and, if she were still taking the antibiotics at the time of the surgery, the culture would not give a true result.
As soon as she stopped taking the antibiotic she felt sick again (she has a pounding feeling in her sinuses and face and a dull headache) but, when she is taking the antibiotic she feels like she is on the verge of having diarrhea all the time and has to remember to keep taking pro-biotics to keep from having it.
Sandy has been coughing for months.
Then, in September she started to walk on the treadmill. She liked doing it and began to increase her speed rapidly. After two weeks she was up to 30 minutes every day walking very fast. During and after her sessions she would be dripping with sweat.
At the beginning of the third week of walking on the treadmill she got sick and had to stop walking. First it was a sinus infection that caused her to frequently have to blow bloody mucus out of her nose. She didn't make a special appointment for the infection, but waited until her next appointment with her pain doctor. The appointment was just a few days after she started to complain about her sinuses and he gave her a prescription for Amoxicillin.
Two days after starting the antibiotic she told me about a cyst she had known was growing on her abdomen. When she showed it to me I couldn't believe it. It was huge, angry and red and looked like it was ready to explode (she showed me because it had begun to be painful when she was just sitting down -- it had been bad only when she got up). I told her she needed to go to the emergency room immediately and she reluctantly agreed and we went.
At the hospital she was anesthetized and the cyst was lanced, drained, packed and covered. She was given another antibiotic to take with the Amoxicillin and sent home. (The cyst cleared up nicely in two days, but she still had the sinus infection.
At this point I suggested she make an appointment to see the doctor who diagnosed her as having osteomyelitis of the jawbone in 2001 and who she has seen at least once a year since.
She agreed and she went to see him three weeks ago. After examining her sinuses with a light and seeing that she has a bloody mass blocking her sinuses he immediately put her on a nebulizer with a steroid, an anti-fungal, and an anti-bacterial in the more info
mist and gave her a shot with the same contents. She had to sit there for 40 minutes breathing the mist and he talked to us about how osteomyelitis comes back even after years of it seeming to be in arrest.
The doctor sent her home with a prescription of yet another antibiotic and an appointment to see him the next week. Well, that antibiotic didn't do much and at her second appointment last Thursday he put her on an extremely strong penicillin mixed with another antibiotic.
She is taking dozens of probiotics between doses of antibiotics (to keep from having diarrhea -- she learned to do this when this same doctor had her on a pic-line pumping antibiotics into her vein for three months at a time trying to kill the bacteria in her jawbone) and is gradually feeling better (her cough is 50 percent better, but she is still blowing bloody mucus out of her nose).
The doctor also has her taking steroids, which seem to help the pain she has in her breasts when the dose is strong (both times the pills are to be taken 7 on the first day, 6 on the second day, etc). So, by the time she is on just one, or, on the present schedule, 1/2 a pill, they stop working. They are the only thing that has helped reduce the inflammation she has in her lymph.
Well, I don't know what I would do if I were Sandy. She seems to be able to ignore or put up with a lot more pain than I ever could.
It reminds me of when all this came to light in 2001 and the MRI of her head showed infection in her jawbone above her two upper front teeth (as well as other areas) and she said, "Oh that's why whenever I touched my two front teeth with a glass it hurt so bad." When I asked her why she never told me about how her teeth hurt she said, "I thought everybody's teeth hurt like that."
Swelling down a lot
Notice you can begin to see her ears, swelling going down.