Prolonged reaction to radiation treatments

Dotti,
When I read what I wrote in my response to your questions, I realized a lot of my response sounds like I'm overlooking what's being done for your husband now. Some of what I wrote was for the benefit of others who read this. I'm glad you found help and that progress is being made.
Does Ken himself want to go through all of this trying to be able to swallow drinks and maybe food? Of course your input is extremely important, but make sure he wants this for himself. I think if there's success in opening a way for food to be ingested orally, his swallowing ability has a great chance of being impaired. There's a LOT of damage there. Does his doctor say he will be able to swallow more than sips of water? Are the ELF procedures painful? How long does the doctor think it will take to get to the goal, the ability to swallow?
Carol

I hate to inform you of this, but side effects of radiation can continue to develop for up to five years. I am now almost two years post treatment, still have a sore throat, can’t eat anything spicy because it burns my mouth, I have lymph edema, and new side effects continue to manifest. I have most of my taste back, but not all, and salivary glands are destroyed, so my digestion is also affected.
Be patient...it may get worse before it gets better, but everyone is different.

I am actually able to taste more everyday now. I am eating 2 meals a day by mouth and only one through the tube. My biggest problem with eating is all the teeth they pulled before the radiation began. I tried to eat pizza today. chewed forever.

hat is wonderful news, beakmom! And it only gets better, hopefully! Once you're done with treatment and feel well-recovered, you can consider teeth implants or, if you're not a candidate, a bridge or two so you can get back to chewing. Keep up the progress...you're doing great!

Well I'm 5yrs out and i still have major problems my life is nothing like before cancer i go to Vanderbilt they shake their heads to

Thank you so much I'm still hanging in and fighting

Hi Carol, sorry for the delay in writing but my scheduled was filled with my own variety of scans and test as I manage MBC in bones thank to non-hodgkins lymphoma since 2012! I'll be at DFCI for my 3pm consult review with Dr. Burstein this Wednesday May 2nd, if it's possible to meet, would love too. Regarding Ken, yes indeed he is 100% on board with this long-term ELR - esophageal lumen restoration - process post having his upper esophagus collapse during/post the "routine" 35-day radiation therapy for oropharyngeal throat cancer. We have learned that 40% of patients going through such aggressive radiation now suffer collapsed occlusions of esophagus, sadly Ken is in that group. Per Dr. Estores of Shands Cancer Center/Gainesville FL, every patient is different with this procedure, and over his 10-yrs specialty treatments, he doesn't have a large "test" group, however he does have a 75% penetration rate through blockage and then anywhere from 25-75% success rate with patients securing some level of swallow, and ideally eating again. The initial surgery to attempt penetration was approx. 45 mins, thereafter the every 2 or 3 wk dilation is typically less than 15mins. Ken just competed his 5th procedure, they secured approx. 3/16th inch opening and he attempts to swallow 1/2tsp 10X daily for muscle exercise. We're not sure what really goes down, but he has less mucus discharge. thats a sign something is going down. As we know, it is critical for head/neck survivors to do their PT daily to regain and maintain all muscle strength, plus stretching your mouth opening so you don't lost jaw muscle. This is a long journey, I highly recommend all Head/Neck patients to be under the guidance of a oncology specialist in this field, ideally at a medical research center as they indeed are the most advance with best therapy options. We can't change the past, but I truly believe that if his medical team of community-based medical and radiation oncologist and ENT did swallow study test before and during their "35-day standard radiation therapy", then perhaps they would have stopped the radiation shortly after 3rd week when tumor was no longer there and he still could swallow, it was the next 4wks that collaged and destroy his esophagus. We are continuously told "at least he is cancer free" and this could be a permanent life-style change to live on a feeding tube. I advocate that the medical practitioners should be more open and upfront on treatment progress and let us patients and caregivers make informed choices whether to continue and risk potential permanent collateral damage, such conversation never happened with us; and no one knows for sure whether oral tumor cancers return or not regardless of 21 treatment days vs 35 treatment days. I send our strength to all survivors on this head/neck cancer journey, it is truly the most challenging disease we have experienced after knowing the blood cancer world since 2012 and breast cancer world since 2017, I share my belief of just how important it is to be and remain positive and to maintain the healthiest, greenest nutrition and lifestyle to nourish your body and mind for the battles ahead. Hugs and smiles to all, Dotti

Dotti,
Thanks for answering, I learn from people here and what your husband is going through is new to me. I'll try to pass along your concern when patients come here to ask what they should do to prepare for treatment. I'm not sure where you got the idea that I'm local to DFCI (to meet), I'm in Maryland and Pennsylvania (back and forth between 2 houses).
I'm glad Ken is making progress.
Carol

Hi Dotti. Wow, what a trial for both of you. I was diagnosed 11/2004 (Stage III), started treatment 01/2005, spent almost 6 months at Methodist Hospital in Houston, TX, discharged 06/2005. 37 rounds of IMRT radiation with Cisplatin and 5-FU. Lost nearly 50 lbs. Had PEG tube placed at beginning of treatments. 13 years out I still have issues with fatigue and swallowing some things. Taste is somewhat back to normal, but some things I still can't tolerate. The common term for the "Standard of Care" is "slash, burn and poison"....surgery, radiation and chemotherapy. Because we still don't have a "cure" in the form of a drug that one can take daily, the standard of care is the protocol followed by most oncologists. Unfortunately, there is a huge disparity in the outcome due to the variations in the skill of the doctor. There's an old joke, "what do you call the person that graduated at the bottom of their medical school class?". The answer, unfortunately is "doctor". In watching various blogs, including those on Facebook, it is clear that plenty of folks suffer at the hands of lousy care. I was fortunate to live in the Houston area, which has world-class medical care in all disciplines. People who live in rural areas or areas not served by a medical center like those in Houston tend to suffer poorer outcomes. The damage to your husbands esophagus is horrible. Of course, even with the best of care, different people have different outcomes with identical treatment protocols. Most competent oncologists do understand the ongoing problems that result from the "standard of care". When I was originally diagnosed, my otolaryngologist said to me, "Harry, I love to cut, but we're not going to do that to you". I have been so grateful for his honesty. I have friends who are forever horribly scarred by surgery. Yet, in some cases, surgery is the best option. I can't imagine the journey you and your husband are on. But....never, never give up!

Thanks for sharing your journey and insight. I think one of the most valuable tools we Warriors can lend is sharing the journey to ideally encourage all to learn about their disease, it’s challenges and ask lots of questions along the way, including challenging a doc’s position if you’re just not comfortable with it, but be prepared to explain why you question it and want to try another route. For throat cancer patients, surgery is indeed the most radical and most likely debilitating model and yes using newer protocols of radiation & chemo combos is good with adequate patient monitoring throughout. I hear to often our medical docs simply don’t have that “fact-based medical research” therefore they don’t deviate from published standard of care protocols, yet we do find cancer centers have newer, more current protocols they test and practice, certainly before that protocol may get communicated out to community oncology centers. To get the best of both worlds, I always speak to the value of securing your specialty oncologist’s consult and recommendations, most regiments can be managed under your community settings but a patient in battle is best armed with the experts steering. Even today while in dilation surgery here in FL, I asked about adding the VitalStim as part of my husband’s swallow exercise regiments to help awaken his damaged throat muscles, the response is they have no evidence to show therapeutic value for patient, I counter with there is no evidence that says it doesnt work for same patient. So, as long as your therapy routine doesn’t impact surgical and oncology, and no added unnecessary expense to your bottom line, then why not be proactive and try what’s available to see if it helps a patient as surely it can’t hurt! Personally I believe I’m managing my MBC and lymphoma challenge as well as I am due to the added level of nutritional care I elected; while my oncology docs have no fact-based evidence protocol where they would recommend these levels of vitamins and antioxidants to help your immune health and cellular growth heal, I know and am living proof just how much my added protocols support my healing journey. Stay strong all, remember we fund cancer research to help bring better options to all along this disease journey.