Mar 11, 2013 - 12:15 am
Curious to find anyone else surviving with returning squamous cell cancer. My mother started with diagnosis in Sep2005 at 71 yrs old. No teeth already - but now no dentures either. Feeding tube installed Dec2005. First surgery JAN2006 lost inside cheek area with reconstruction from hip graph. No bone involvement at this time. Followed with 30 rad treatments. Left with permanent rad damage ... continued thin areas, oral blistering breakouts, and bleeding. Returned with second surgery JAN2008, lost bones from mid chin to upper cheek bone left side. Reconstruction was double muscle flap from underneath left breast threaded up chest-neck-face and attached to upper cheek bone. The hope was to give the floating chin bone support and the face better shape. My mother did not tolerate as well as hoped and lack of use and exercise simply tightened the muscle which drew up and sunk in. Then in OCT2010 cancer returned and she lost 3/4 of her tongue. She said NO MORE ... but then met someone living with the growth and literally carrying its protrusion by hand hanging down to his neck. Mom finally felt that she would endure whatever the doctor felt best, attribute to the studies, and someday be thankful to leave this world with the only grace she knows how to handle. Needless to say, Mom has been on a feeding tube 100% since Dec2005. She crushes her meds (1x Paxil, 2x Tegritol, 2mg 1x estrace, night 1x ambion only) and pours down with 4 Boosts Plus (strawberry) per day. Mom could not tolerate those other thick feeding tube canned goods as she aspirated them all ... now that was horrible.
Mom found she tolerated the strawberry Boost/Boost Plus better and could handle the smell and taste. Many years ago her 5'7" frame weighed about 135 and she now does best at 124-126. However, since BOOST (Nestles) began to capitalize on their bottom line ... they have lessened the sugars, taken out some of the strawberry flavor and color, and introduced the "tetra packs" which are near impossible for Mom the open and handle without spills. Mom has reduced to 114 lbs; inabilities to think well from malnutrition, further depression and not wanting to eat. Her ONLY pleasure was in having found a tolerable good taste to live with and now that is gone. I even spoke with Nestle and they said "we are now better for our environment and were never meant for 100% feeding tube patients." Although her doctor had agreed after 3 years of looking that that is what she tolerated the best and it was keeping her satisfied and at 124lbs. P.S. we recycle and have not found a recycling place to accept tetra pks in 100 miles from where we live (Memphis TN area) we use to recycle the plastic bottles. Anyway, I am now trying desperately to find a good tasting food supply which would allow Mom to continue feeding herself. It has to be on the level of the pour type foods and not like pureed food as the thickness doesn't work. She has a wonderful self serving longer feeding tube which is very flexible and allows her to hold up and pour in and to wrap up and slide into a waistband pouch area. Trying to mix supplements, pureed foods, and vitamins is not something she can maintain. She is in my home . I had to go back to work full time after three years off. She does well normally and has Hospice assistance now (only 3 hours per week). Believe it or not, since she was cancer free at this time, the only way we got some Hospice help was under the diagnosis of COPD. Not your normal COPD but must be treated same due to such loss of the oral cavity. I have proved my thoughts in that I can monitor her for a week and be sure she gets all four a day and build her back up and she thinks just fine and feels better. Yes, she has a fentynol patch (and percocet when extra is needed).
I have learned sooo much and there is so much more to say ... but main focus right now is trying to find others with some experience in longer survival of rare oral squamous cells and how they feed themselves. Even the nutritionalists seem to not understand ... "they don't really taste anyway" Thats just crazy as they taste it on the way back up and live with the horrible smells and depression caused by the inability to eat! Now hating stupid people who say such things.
Thank You for allowing me to pour out my frustration. I do understand the realities of her cancer and her age, now 79 years. But I have also seen them lie there for a few more years before graciously leaving this world behind. I can't just let that happen without searching for, fighting for, a quality of life for my Mom. A beautiful lady.
If you have the experience, please share.
Highest Regards & Passion to you and yours.