CancerCompass message board discussion started by Razor on 9/2/2004 http://www.cancercompass.com/message-board/message/all,1284,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ After 41 Radiation treatments and 2 Waves of Cisplatin, Chemo, I cannot swallow because my esophagus is completely closed with scar tissue. I informed the Radiologist in November of '03 I could not swallow along with my ENT and Infusion nurses. They recommended, Magic Mouthwash and Zoloft. I lost 45 ibs in less than one month and a G-Tube was inserted in Dec of '03. After my last Rad Treatment, Jan 21, 04 my Ent said to wait 3 months before trying to have my esophagus dilated. It's now September and after 4 Endoscopies, I've been informed I'll need an Esophagectomy and Laryngectomy, which I do not want but tube feeding for almost a year has left me depressed and weak. I had stage 4 Hypopharynx squamous cell carcinoma which has been destroyed and Radical Neck surgery to remove a lymph node. Does any one know of any treatments available, besides surgery, I could pursue to save my Esophagus and Larynx?? Thank you Kindly, Ray Razor Thu, 02 Sep 2004 00:00:00 GMT Hi Ray, I know there is a group at Mayo Clinic who had good results in a pilot study using microcurrent therapy to treat and prevent fibrosis associated with radiation therapy of the head and neck. Unfortunately, I think the group went private and may no longer be associated with Mayo Clinic. So, let me send you to the premiere source for Frequency Specific Microcurrent (FSM) Therapy and that would be Dr. Caroline McMakin in Portland, OR. Here are 2 websites: www.frequencyspecific.com and www.drcarol.org. Treatment is totally safe, yet no studies to show effectiveness in radiation induced fibrosis and scarring. Hypothetically, scarring, fibrosis and sclerosis of the esophagus (and most other tissues) can be treated with FSM therapy. Best of luck from Kevin L., MD Kevin L. Mon, 13 Sep 2004 00:00:00 GMT Ray...My mom has had a very similar situation that you are describing. She was diagnosed w/ SCC in 5/02. Went through the rad and chemo treatments along with having a feeding tube put in. Because of the intense rad treatments her throat closed due to scar tissue. Her ENT tried to open it as well as her gastroenterologist. It was a failure both times. I found a doctor at a hospital that is 3 hours away from her who was willing to give it a try. He brought in a gastro doctor in case he couldn't find a passageway through her mouth, which he couldn't. He had the gastro doctor go up in through her feeding tube and they met in the middle and he was able to create an opening through the scar tissue. This was done this past April. She went in to have it stretched again the end of August. This time her ENT doctor was able to do it on his own. My suggestion to you is to find someone who can help you. I learned a very important lesson: There is always someone out there who can help you, you might have to travel and do a little research but never give up. My mom is now able to drink some liquids. Keep me posted. Kim (likimny) Kimberly Y. Wed, 15 Sep 2004 00:00:00 GMT My brother is 47 yrs. old and had maximum rads of radiation on his neck for neck cancer. He finished his radiation in Jun 2003 and was told in Sep 03 that the cancer was back even more aggressively and you have 3 months to live. After an intensive naturopathic/homeopathic remedies and team of naturopathic doctors, he is still FIGHTING! After being on his G-tube since Apr 2003 he is, as you are, depressed and weaken after losing over over 60 lbs. He really needs to get his jaw and esophagus loosened up from the scar tissue the radiation caused. He has felt some amazing things from a treatment called cranial-sacral therapy and to a somewhat lesser degree from acupuncture - with the needles hooked up to electric impulses. He has had about 5 treatments of each so far and he still can't open his mouth - but he feels like it is healing. We would be very interested to hear of any treatments that you hear about to open up your esophagus. Ian T. Ian T. Fri, 17 Sep 2004 00:00:00 GMT Kevin, Thanks for the advice you offered on the site. I have contacted Dr. McMakin for my brother who has had intensive radiation on his neck and can not swallow due to scar tissue build up. Regards, Ian T Ian T. Fri, 17 Sep 2004 00:00:00 GMT I feel so sorry for what you are having to endure but I have no solutions for you, other than to contact a Dr. Jason Williams in Orange Beach, AL that works with ablation therapy and perhaps he can help you. My question of you is where did you have your radiation therapy? My 36 y/o daughter has squamous cell carcinoma of her tongue with spreading to her lymph nodes and is set to begin radiation therapy tomorrow. We've been told of the horrible side effects, however, what you have experienced has not been given as a side effect. We have been told she will need a feeding tube in her stomach as her throat will be burned so badly that she will not be able to eatl. I'm just wondering if your treatment took place where she is getting her treatment - at a major cancer center in Houston. Thanks, and good luck to you - please contact Dr. Jason Williams in Orange Beach for some help. Jalexboo Wed, 22 Sep 2004 00:00:00 GMT My treatments were in Greenbelt MD. at the Greenbelt Cancer Center. There was no monitoring of my Esophagus, Larynx or Throat during my treatments even after I complained I couldn't swallow. I had "severe mucositis" and still nothing was done,so the minute she has any trouble, have a Thoracic Surgeon examine her throat and during her treatments make sure someone keeps track of the scaring and inflamation side-effects. Even if X-Rays need to be taken to see whats going on and if anything can be done to minimize the damage Radiation and Chemo do to good tissue. Be active, take names and keep dates of everyone you talk to and what they do to help you,otherwise you may have terrible side-effects long after you're finished, like I do. Good luck, the Lord is watching Too, remember "7 days without prayer can make one weak"...Ray Razor Fri, 24 Sep 2004 00:00:00 GMT Subject: Complete Blockage, Upper Esophageal Sphincter Message: I am 58 years old, male in good health worked out for 25 years at the YMCA. It started with a lymphnode (left side neck), which lead to fine my left tonsil squamous cell carcinoma May 17, 2004. The tonsil was removed and my team of Doctors recommended me to start taking aggressive treatment, because I was in good health 180 pounds, Chemo then chemo and radiation together. Everything going along good, in the 2nd week of radiation I could not swallow at all. I finish all my treatments as we planed. I already had a feeding tub in place and was eating blended table food. It has been four months since that 2nd week. It has been three months since my last radiation treatment, and now the MRI is clear, still cannot swallow anything. I was sent after two months to see gastro doctor, he went in and back out. He said it was to swollen closed and did not want to take a chance on damaging the esophagus. I went to another doctor just the other day December 18th 2004 and I did not like the way he was talking, at this point I don't know what to do. I don't know if three months is a long time to wait for the esophagus to open or does it go longer with some. Some of the doctors say give it time, and they also say they have not had a patient go this long. I have been maintaining 150 pounds feeling ok walking in the mornings and working from home. I am trying to stay positive. Can anyone help? It would be a nice Christmas present if could swallow again. Update went to the radiation doctor December 30th 2004. He is at a lost, suggest I go back to the doctor I visited on December 19th. None of my medical team seems to know what to do. Should I go back to the ENT? Standing by. John1946 Mon, 03 Jan 2005 00:00:00 GMT Kimberly Y. I would like to know more about your mon's condition now. It sounds very much like me. John C. John1946 Mon, 03 Jan 2005 00:00:00 GMT Kimberly Y. I would like to know more about your mon's condition now. It sounds very much like me. John C. John1946 Mon, 03 Jan 2005 00:00:00 GMT My husband was diagnosed w/nasal pharaynx cancer july 2003. He had radiation and chemo treatments the last which ended in 1/2004. He has been eating thru a tube since 10/03. He is still not able to eat thru his mouth, he says it just cant go down. The doctor says we just have to wait. I think my husband is tired of waiting on the doctors they don't seem to know what to do with him at this point. It sounds like you were able to overcome your situation. Are you able toeat now on your own. Thank you for your expereince it makes me hopeful. If only we can find a doctor to help. Malia Malia Thu, 06 Jan 2005 00:00:00 GMT Did you try Magic MouthWash during your treatments? My radiologist recommended this saying it would relieve the inflamation and it did not. I waited three months and did not go to a CHIEF THORACIC Surgeon to see if he could dilate my esophagus. Then as the tissue healed it shrank, became very hard and tight and no dilation could be done. Next, they wanted to remove my Larynx and esophagus. I started taking Flax Seed Oil SOFTJELLS, 1200 mg along with Evening Primrose Oil SOFTJELLS, 500 mg and the tissue softened a little. Also get Low Carb Cottage Cheese and put a table spoon of Flax Oil over it to eat and you will be cancer free for the rest of your Life. Get the book "How to Fight Cancer and Win", William Fisher but do not wait to have your esophagus dilated and go to the "Chief" of Thoracic Surgery or ENT,... NOW, don't wait..., Cheers with Luck, Ray Razor Sat, 08 Jan 2005 00:00:00 GMT I am sorry it has taken so long for me to reply back to you. My mom has had her throat stretched twice within the last year. She is able to swallow small amounts of liquids and broths. Because her throat was so damaged form the treatments, she has alot of scar tissue build up. Her doctors tell her that she most likely will never be able to eat a "normal" meal again. I think she is scared to try thicker foods in the event that she might choke. She tries which is all I can ask for. I hope this info is helpful to you. Let me know how you are doing. Kimberly Y. Wed, 12 Jan 2005 00:00:00 GMT John...I just read your posting again and wanted to add a few more things to my last one. My mom had an ENT and a gastro doctor open her throat. The ENT went in through her throat and the gastro went in through her feeding tube and they met in the "middle". Once they met, they were able to make a hole and then stretch it open. Her regular ENT and gastro doctor were not able to do this. I eventually found a doctor who was willing to try it again. If you don't mind me asking, where do live? Maybe I could help you out. Also, from experience, don't listen to the line "it takes time"! That is what my moms radiation doctor kept telling her. Five months after she finished treatment she was able to swallow mashed potatoes, scrambled eggs etc. She kept telling her doctor for months that it felt like her throat was closing and all he said was "it takes time"!! If you are not happy with his/her answer keep going until you find one you do. Kim Kimberly Y. Wed, 12 Jan 2005 00:00:00 GMT K, I live in Nashville, TN. Thanks, for your reply. Any advice, please let me know. Names of Drs., etc. John1946 Thu, 13 Jan 2005 00:00:00 GMT GOOD NEWS! W/Surgery yesterday Feb 16, 2005. The esophagus had about a one and half inch stricture from the top. Would not open at all, it was tight. (STRICTURE) cause by the radiation) What they did was, take out the G-tube and went up from the bottom of the esophagus and was able to open. (Good news I swallowed water the first night) (It has been a half year since I have swallowed anything at all.) This morning I am drinking a cup of coffee. This is so cool! And on to more liq. tomorrow, like clear soup. They put in another temporary tub this time that can be taken out by deflating on the inside of stomach end of tub and pulling back through the small hole in the stomach to the outside and then stitch up, so I want have to have surgery again. This will take place when we feel it is safe and I am getting everything through mouth. This is the best news I have ever had in my life. I never thought a cup of coffee was a big deal. Also the MRI and CT scans were clear. John1946 Sun, 20 Feb 2005 00:00:00 GMT Southwest Regional Medical Center in Tulsa, OK Under "Cancer Treatment Centers of America has a NEW treatment that has been VERY effective!!!! It's called "HDR Brachytherapy" and after I'm finished with my last 3 Chemotherapies for my Esophageal Cancer -- I'm DEFINITELY gonna' go there!!!!! Keep me posted -- OK??? THANKS! Terry L. Albuquerque, NM Terry369 Wed, 04 May 2005 00:00:00 GMT Kimberly, I've been reading your post because my sister's esophagus is completely closed due to scarring from radiation to treat squamous cell cancer in her throat. She beat the cancer - twice, but has been on a feeding tube for almost 2 years now and is completely unable to swallow - even water. I would like to get the name of the doctor and/or hospital where you found a resolution to this problem. We saw her gastro guy last week and it was extremely depressing. He gave us no hope that she would ever be able to swallow again. Her ENT pretty much told her the same thing, but my instincts tell me that somebody somewhere has attempted to open a severely scarred esophagus. My sister is a Medicare/Medicaid patient in South Carolina. Any help you can give would be greatly appreciated! Becki Thu, 23 Jun 2005 00:00:00 GMT I was diagnoed with SCC in 7/04 had radiation therapy for several months ending in 11/04. I have had a PEG tube and been unable to swallow almost since 7/04. I have now been told my esophagus has been closed off due to scare tissue caused by radiation. My situation sounded like something you've learned about. I was wondering if you have learned any additional information regarding treatment options since the posting of 9/04. I am in CA but willing to pursue any alternatives. Thank you for your time and any information you can provide. Lin m. Thu, 11 Aug 2005 00:00:00 GMT Hello, it sounds like I am experiencing the same thing you have been through. Almost one year since eating/swallowing. the doctors arent giving me much hope at this time. Where are you located, I am in CA. I am looking for more information on the procedure you had done and curious as to how you are progressing since they opened you back up?? Any information you can supply would be appreciated. Thank you so much for your time and information. I look forward to hearing from you. Lin m. Thu, 11 Aug 2005 00:00:00 GMT What is the treatment they are using for treating the esophagus scarring? Sam_1008 Sun, 28 Aug 2005 00:00:00 GMT John, It really gave me some hope to read your message. I hope you are experiencing continued success and are still checking in here. I am 9 weeks post treatment, could swallow a little, though painfully, as recently as 10/8 by my records. I tried to tell the hospital people that my swallow was disappearing but they said "it takes time". A barium swallow test this past week showed no opening so in a about 10 days I'm scheduled to have the upper probe thing to look for an opening to dilate- if that doesn't work, they'll try from the peg tube up approach. Did you have both ENT and GAstro drs. at the same time or just the lower? I used to live in Nashville-which hospital and DRs?(if they let you say on here.) I'm in Atlanta and hoping for success in the next 2 weeks but I can tell my doctor is quite worried, and I'm not sure he's the most knowledgable when it comes to this.MY swallow function is fine, its just that nothing can get to my esophagus- and its clearly been in the last month it closed to whatever it is now. Tell me how you're doing and the hosp/dr please. Thanks for any help you can give me. 1right1 Fri, 11 Nov 2005 00:00:00 GMT John, How are you doing? My Mom is 75 she needs a feeding tube in her stomach.. the doctors have tried twice to go down her throat to see inside stomach and they say there is old food in there and they cannot get past it. she now has a feeding tube in her nose that is supposed to be into her stomach. Dr. also say there is not much more they can do. Do you have any suggestions? Thank you Clay Clay500 Tue, 27 Dec 2005 00:00:00 GMT Kimberly, CAn you please tell me where the doctor is that treated your Mom? My Mom has an obstruction in her espaphagus and the doctors are not able to get through to put in a feeding tube. They have a tube in her nose now but were trying to use an endoscope to go into her stomach to put a tube in through her abdomin and in the side of her stomach so they can remove the feeding tube from her nose. PLEASE Help ASAP. The doctors today sound like they are giving up. Thank you, Clay (Columbus Ohio) Clay500 Tue, 27 Dec 2005 00:00:00 GMT From John 1946 squamosu cell May 17 2004/left tonsil. esophageal stricture from radiation. feeding tub for one year. could not swallow at all for six months. Tub taken out May 2005. I am doing well, eating anything wet and juicy, just went to see my ENT last week December 15th 2005. Everything looks good, he wants to see me in July 2006. All MRI's have been clear. I am due my 6 month folow up MRI in Feb 2006. That is always hard waiting on those results. My life is getting back to normal as possible, working, my weight is up to 165 now from the low of 145. I was 180 before any treatment. Overall my team of doctors are very pleased with me, but I have done everything to help my case. Getting on a schedule, three meal a day, rest and exercise daily. Vanderblilt is a great hospital!!. If anyone has any questions I would be happy to try to answer them. John 1946. John1946 Tue, 27 Dec 2005 00:00:00 GMT Do you think if you had used the flaxseed and primrose during your radiation instead of at the end of treatments that you wouldn't have had complete closure of your throat?   Brittany Wed, 21 Mar 2007 00:00:00 GMT Can the thorasic surgeons do anything to help...or is it useless?  My dad is about to begin radiation and he has already been thru complete restruction of his esophagus and had a laryngectomy.  He has been thru so much.  Just in the last 2 weeks he has been able to eat. (After months of eating nothing by mouth).   Before the surgery, his tumor in his hypopharyx had gotten so big he couldn't even swallow spit.  It's been nice to see him be able to eat again.  Now, after reading all these posts, I'm afraid he is just going to be back where he was before.  We were told his throat would be sore and he would experience a little trouble swallowing for a few months, but it looks as though we've been mislead.  All of you seem to be suffering with stricture that is forever.  My Dad is going to feel like the surgery was for nothing...why do reconstruction of your esophagus if the radiation is just going to close it up anyway?  Thank you in advance for your response.  Brittany Wed, 21 Mar 2007 00:00:00 GMT