I got a heartening letter yesterday from a fellow SNUC’er. His wife, actually.
———————————————————————– My name is Lisa Burns. I’ve been following your blog for several months. My husband of 30 years was also diagnosed with SNUC ( Nov 2010.) His name is Bob and he is about your age (born in 1959) As you know only too well life gets real crazy real fast when hit with something like this. A few quick highlights about Bob’s SNUC world – Were on our 4th oncologist. Finally found our man after several 2nd opinions and then some – for us MD Anderson was not “the best” – in fact, I believe if Bob had continued treatment there he would not have survived. We ultimately have relied on a precarious mix of conventional medicine and alternative treatments. Also we implemented a lot of changes in diet. Pretty sure I would qualify as a professional juicer at this point. Bob used Homeopathic remedies throughout treatment. He had endoscopic neurosurgery using NICO Myriad and stealth technology in May 2011, 8 weeks of chemotherapy (1 round of Cisplatinum and Etopiside at MDA and then 6 rounds of Carboplatinum with Taxol at Baylor) both before and after surgery. The surgery was rough but Bob recovered remarkably well. After recovering from surgery he began the 30 radiation treatments (IMRT – 5 days a week). Last IMRT treatment was the day before Thanksgiving 2011 and it kicked his ass in every direction possible. The good news—Post surgery MRI on 1/16/2012 showed no sign of any re-growth. Also scoped the sinus cavities and found nothing. Next step will be a day surgery to clean out the sinus cavities on 2/28 and get a little sample to biopsy just for good measure. Hopefully that will help with the ongoing congestion and shut down the ongoing mucus factory in his head.
Right after Christmas Bob starting back on his treadmill. He’s up to about 3 miles X 5 days a week. The exercise is good but hinders (in my humble opinion) any efforts to gain weight back. He lost 50 lbs during radiation – his low was 146 but he’s back up to 152 now. No feeding tube – Dr’s were not too happy about that but he managed to survive after breaking down and drinking the Ensures. Bob also still is experiencing the dry skin/dry mouth/dry everything. He’s had several bouts with thrush.
Docs will run another MRI March 16th.Until then we are just happy to be here. I wanted to just share our story with you and encourage you with a survivor story. I know the internet doesn’t offer up too many of those regarding SNUC. Also we’d like to thank you for sharing your story so honestly. Your blog and your attitude truly helped Bob as he was going through treatment. We wish you all things good as you continue to fight the good fight and continue to recover. I’d love to know more about your treatment plan and your DR’s. Also I would be happy to pass along any info from Bob’s experience that you might be interested in.
One last note-My daughter Megan found your blog and is a faithful follower as well. She said to tell you Hi.
Best wishes to you, Brigitte and Velma.
First of all, I’m glad to know that there are chicks out there who dig a fella w/ puffy cheeks, hollow chest, and no eyebrows. Thanks, Megan.
Mrs. Lisa Burns has obviously jumped into the world of practical oncology w/ both feet, and knows more about some aspects than me. Really, you could say the same about my wife, Brigitte. She used her journalist skills and her Mac soon after my diagnosis and learned a lot about SNUC. She then told me not to bother my pretty little head w/ all of that and sent me one link to some fellow who wrote a lot about cancer nutrition; http://www.cancertutor.com/AltTreatments/Alt_Diet.html This is done by some true believer, so much is a bit pedantic or sententious. But lots of info, and rules. Read the info, but remember the rules. You know: 1) No sugar, or things that lead to sugar – alcohol, simple carbs 2) Very little fat (don’t ask me which one) except certain fish oils and olive oil 3) no processed food, which precludes most restaurants and all fast food 4) a long list of vegetables that fight cancer and that shorter list of food that feeds cancer.
So I don’t know a whole lot about SNUC, nor specific treatments. I guess this blog is pretty much a ‘User’s Guide’ to cancer. In that vein, I hereby include two documents:
OK, that’s enough for now. I gotta go make some juice. I think some more food porn is in order. I want any fellow SNUC’er (maybe other flavors too, if you’re nice about it and don’t tell me how fucking ‘aggressive’ is YOUR cancer) to send a list of high-calorie/protein food you eat to fight cachexia. Hopefully, it does not feed the cancer too! I will start a list of my own and share it soon.
Now for a little hair. The first has me modeling the nasal strip to help keep open my nostrils in bed. Helps a little. And notice the beard is even coming in a bit more. Ditto the damn nose hairs. Gotta get that OncoTrim!