Started Treatment at MGH

Hi Folks,

I posted the last time at the end of March when I told you that the attempted trans oral robotic surgery didn't work out (tumor to big to get out with clean margins - .8 mm - that's a lot to territory for my small larynx so they left it in).

I've got Stage IV supraglottic cancer with three lymph nodes, both sides. After talking to the folks at Mt Sinai, where they attempted surgery, the local guy in Albany, NY and going for a four and half hour consult at Mass General Hospital (MGH) in Boston, it was clear MGH was the place. One of your members emailed me about his positive MGH experience and a friend of a friend finished treatment last November and shared his story.

The place is pretty amazing. The head and neck team does more than 200 a year, they told me they had two people with my rare location in treatment now. The Albany guy does 15 total head and neck a year and changed the subject when I asked if he had ever done one at my location. The MGH team all works together. In the first week I had a nutrition consult, swallow test, chemo training and lots of visits with MD's, PA's and nurses. If I have an issue I just ask to see a nurse when I get my rads or call the oncology clinic and they get right back to you. The physicist spent 45 minutes showing us the IMRT radiation plan, I was very impressed, very pretty 3D graphics. They will keep the heavy radiation off half my larynx (other half has the tumor) and off my esophagus.

Head and Neck is rare cancer, go directly to a top center, at the very least for a second opinion. I was diagnosed February 23th, had attempted surgery in NYC on March 18h, seen by MGH on March 25, approved by insurance on March 29, radiation planning scans on March 31st and started treatment on April 13th. Things can be done quickly if you ask.

The first week of rads weren't too bad but chemo this Tuesday knocked me for a loop when on Thursday and Friday I couldn't eat hardly anything. No appetite, everything tastes disgusting (metallic) and queasy even with all the anti-nausea meds. Today is better and I am getting down some calories with some high protein shakes. I can swallow but the tumor is in the way and food gets caught under it so liquids are easier. I can see why a tube is needed, although I don't look forward to getting one. I may go for one early just to not have to struggle to eat enough post chemo. They have their own designed tube placed directly into the stomach with barium.

I did some research and added two items to my diet: fish oil and glutamine. Two tsp of fish oil has been found to reduce wasting (eating your own muscles for protein)and 10 mg of glutamine three times a day (30 mg total) rinsing your mouth and then swallowing has been shown to significantly reduce mouth sores. It feels really good in my mouth.

I also use aloe on my neck three to four times a day followed by Aveno after the aloe drys, it really reduced the burns I started to get. I brought my aloe plant from home. All of these were approved by the dietitian and oncology PA. I am only 8 rads and 1 chemo in so I will let you know.

Trying to stay positive since I know more **** is coming.

Lizzie K