Adenoid cystic carcinoma - left tongue base

Teresa, thanks for checking in with me. No new cancer treatment yet but I'm doing pretty well. Still have a lot of nerve pain in and around where they did a lung "wedge" resection last year. My other tumors continue to grow slowly in the neck, left lung and lymph nodes under my arm. My focus right now is on getting some Hyperbaric oxygen treatments done so they can extract some teeth and rebuild a set of teeth to do the work. In many cases such as mine when you lose a salivary gland it changes the overall health of your mouth and teeth getting destroyed is not uncommon. Radiation to that area is another contributing factor to poor teeth. The Hyperbaric treatments are supposed to help the healing process when they pull teeth and operate in your mouth. I am in the process of getting most of these treatments done locally where I live before I have the extractions done. The Mayo Clinic Hyperbaric team is recommending a total of at least 30 treatments. 20 prior to surgery and 10 after. One treatment a day for about 2 hours. If I can get most of them locally I wont have to spend 6 weeks in Minnesota during the winter. That's where I am at right now......hope you and everyone else in the group is doing well.
Pat

Hi Pat, @dakotapat

Thanks for letting us know how you are doing. I'm glad to hear that there has not been a need for any new cancer treatment. Hyperbaric oxygen treatments sound promising to help you with the healing process.

I hope you are able to find a location for that treatment closer to your home.

Teresa

This profile relates to my wife Willa's adenoid cystic carcinomas of left tongue base There has been little or no change in her condition since I opened a discussion in October. Willa continues with the g-tube for all food, hydraulics and meds . The mouth and jaw continue to have limited movement which affects speech, teeth brushing and dental servicing. Mouth exercises continue and Willa has maintained a good attitude despite these difficulties. As indicated little more can be done at this point and we will await our next appointment with Willa's oncologist in February. In the meantime our family doctor is able to deal with minor problems which arise periodically.

Thank you Douglas, @douger

I'm glad to hear that Willa is maintaining her current level of functioning. Wishing you both well as you look forward to Thanksgiving.

Teresa

We attended at the Head and Neck section of Princess Margaret Cancer Hospital in Toronto on Feb 22 for a regular review of Willa's
condition by her Physician. Flexible nasal endoscopy continues to reveal the ulcer in the left posterolateral portion of Willa's left tongue base. Dr confirms that this inoperable ulcer is cancerous and no further treatment is possible. Main concern is possibility of bleeding of the ulcer which could be serious. Prognosis is that this is a very slow growing cancer and difficult to say what prospects are for life expectancy. She has had a new gravity tube installed recently as the first one had been in for almost 18mths. Pain continues to be dealt with Fentanyl 25mcg patch and hydromorphone as required. She receives 5 1.5 liter containers of ISOsource daily plus considerable water for hydration - all thru the tube as swallowing ability is non existent. Spirit is good and Willa is able to participate in normal social and family activities. We will return to Princess Margaret for a further review in August

@douger Hello Douglas,

Thank you for updating us on Willa's condition. It is so good to hear that her spirits are good and she is able to participate in regular social and family activities in spite of her physical limitations. Willa must be an exceptionally positive person!

I am sorry to hear of the pain she is dealing with. Are the Fentanyl patches and the hydromorphone controlling her pain well?

I look forward to hearing from you again and wish Willa and you the best.

Teresa

YES - Pain is maintained quite well with the two medications. Fentanyl are changed every 3 days and hydromorphone is used infrequently.

What were the first signs Justin? I have been taking Methotrexate, first by tablet and now by self Injection. The sore on my mouth resembles a Cold Sore. Inside my mouth are very painful sores. At first I called them canker sores. But, they are different. I have had a rash all over my body for a long long time. Now it is controlled. I went to many doctors who instead of reading up on these things, keep push what they know and no more. If my teeth Accsidently hit one of these sores, it HURTS.

An update on my wife Willa's journey with rare adenoid cystic carcinoma of the salivary gland cancer. We attended a follow up appointment with her radiation oncologist at Princess Margaret Cancer Hospital (PM) in Toronto on Aug 23/18 . There had been no appreciable change in the size of the tumor since Feb. however she remains unable to swallow anything and all intake of food, hydraulics, medication remains by way of G tube. Her food intake consists of 5 250mlg containers of Nestles ISO Source daily which is sufficient to maintain her weight and energy. This process goes on very well and Willa has exceptional acceptance of the program. During this visit we asked about possible new trials which might be helpful. On October 3 we returned to PM and met with a Medical Oncologist and his team to review possibilities. One study would have involved taking Selinexor however it must be taken orally and not crushed which was a no go. Systemic chemotherapy was also discussed but with but results have not proven successful In the end Willa opted to continue seeing her regular radiation oncologist every 6 months and family doctor as needed. For those of you not familiar with the Canadian Health care system all of this including feeding equipment, food and drugs is covered by our government sponsored health plan.

Hi @douger, Just thought I would check to see how you and Willa are doing. I'd love to get an update if you have a minute.