difficulty swallowing after radiation for throat cancer

amy_evan2005
amy_evan2005 Member Posts: 39
edited March 2014 in Head and Neck Cancer #1
I am looking for anyone who has experience in this area.My husband was diagnosed on July 1,2009. He finished chemo & radiation Sept.10 and is still unable to swallow. He still has very thick mucous that he has to spit out & this keeps him awake most of the night. There is also still alot of blood coughed up. Has been tube feeding since august & he also had to have a trach in July. Doctors keep telling us he should be eating by now but no assistance in doing this. Is this normal & how long should we expect this to last. Have an appointment with oncologist tomorrow. Are ther any specific questions I should bbe asking.
Thank you for any assistance in this matter. Amy & Evan

I will also check back in morning before we leave.
«134

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    questions
    If hub is still spitting up blood, the very first thing I would ask for is an endoscopy, to see if he has any internal bleeding from the esophagus down to the stomach. Such a scope can typically catch even micro-bleeding, and there has to be SOME reason why hub is still bleeding this long after treatment. It may be that there was some damage done during insertion of the tracheal tube (stuff happens).

    If you do not have a nutritionist, I would ask the doc for a referral to one immediately, as your hub needs to be on a solid diet, even if it is via the feed tube, AND the nutritionist may be able to suggest easy ways for hub to get back into the eating orally thing. Which makes me think of the speech therapist, who, really, can be as involved in hub learning to eat again as anyone else. If he does not have one, he needs one immediately.

    That said, I caution you to be patient as well. You do not explain the need for the trache, so I can't imagine what that is about. Even so, if doctors are saying he should be eating by now, ask them directly what their advice is regarding how that will happen. Is it will? Is it physical? You need to know, both of you, and you need to know how to move forward and they need to tell you how to do that. You pay them to do that.

    Best wishes to your husband and his family. Be sure to take care of yourself as you take care of hub.

    Take care,

    Joe
  • Craig_Griffin
    Craig_Griffin Member Posts: 52
    Keep an open mind
    Amy, In a cancer support group that I was attending we had a woman that used her feeding tube for nearly 6 months after raditation. When she felt ready she began to eat "solid food" again. I have no reason to lie to you. We became close knit in this group and soon realized that the doctors didn't have all the absolutely correct timetables on treatment. I learned a wealth of information on cancer from the diversity of patients that attended meetings. Nearly every doctor made me nervous, but this group helped with my understanding, and with my cancer treatment. I am now cancer free fromstage 4 throat and neck cancer. Keep an open mind about how an individual responds to treatment, and how sson they recover. I didn't allow enough time before going to solid food, and it was very difficult on me from my throat all the way through to you know where. Its your husband's life so let him proceed at a comfortable speed before forcing anything to happen. It may help to try yogurt and other soft foods at first. I also lived on scrambled or french toast for a long time before going back to anything more solid. -Craig.
  • amy_evan2005
    amy_evan2005 Member Posts: 39

    questions
    If hub is still spitting up blood, the very first thing I would ask for is an endoscopy, to see if he has any internal bleeding from the esophagus down to the stomach. Such a scope can typically catch even micro-bleeding, and there has to be SOME reason why hub is still bleeding this long after treatment. It may be that there was some damage done during insertion of the tracheal tube (stuff happens).

    If you do not have a nutritionist, I would ask the doc for a referral to one immediately, as your hub needs to be on a solid diet, even if it is via the feed tube, AND the nutritionist may be able to suggest easy ways for hub to get back into the eating orally thing. Which makes me think of the speech therapist, who, really, can be as involved in hub learning to eat again as anyone else. If he does not have one, he needs one immediately.

    That said, I caution you to be patient as well. You do not explain the need for the trache, so I can't imagine what that is about. Even so, if doctors are saying he should be eating by now, ask them directly what their advice is regarding how that will happen. Is it will? Is it physical? You need to know, both of you, and you need to know how to move forward and they need to tell you how to do that. You pay them to do that.

    Best wishes to your husband and his family. Be sure to take care of yourself as you take care of hub.

    Take care,

    Joe

    Thank you
    Thank you for your time and helping with our questions. He had a scope done Nov. 2 & they said that they no longer saw the tumor & they looked in the esophagus also & did not see any reason why he could not swallow. Yet they are still waiting on doing any swallow studies or a therapist. I guess we'll wait & see what we find out tomorrow & go from there. Once again, Thank you.

    Amy
  • amy_evan2005
    amy_evan2005 Member Posts: 39

    Keep an open mind
    Amy, In a cancer support group that I was attending we had a woman that used her feeding tube for nearly 6 months after raditation. When she felt ready she began to eat "solid food" again. I have no reason to lie to you. We became close knit in this group and soon realized that the doctors didn't have all the absolutely correct timetables on treatment. I learned a wealth of information on cancer from the diversity of patients that attended meetings. Nearly every doctor made me nervous, but this group helped with my understanding, and with my cancer treatment. I am now cancer free fromstage 4 throat and neck cancer. Keep an open mind about how an individual responds to treatment, and how sson they recover. I didn't allow enough time before going to solid food, and it was very difficult on me from my throat all the way through to you know where. Its your husband's life so let him proceed at a comfortable speed before forcing anything to happen. It may help to try yogurt and other soft foods at first. I also lived on scrambled or french toast for a long time before going back to anything more solid. -Craig.

    Thank you
    Thank you for writing to us. I know exactly what you mean about doctors. It's not that he can't swallow exactly that it only goes down so far then it has to come back up because it won't go down anymore. The trach had to be put in when they did the biopsy because his throat closed up. They left it in because of the swelling that would happen from the radiation instead of taking it out & then having to put another in. I will let you know what we learn tomorrow. It's very nice to talk with people who understand. Thank you.

    Amy
  • SASH
    SASH Member Posts: 421 Member
    Eating after Rads
    Everyone is different and the swallowing could be more of fear than a physical issue. I went about 2 1/2 months after radiation before I started eating solid foods again. You can look for a speech pathologist that specializes in swallowing disorders in your area by going to http://www.swallowingdisorders.org. Explain the situation to see if they can get to him sooner than later.
  • Scambuster
    Scambuster Member Posts: 973
    Mucus Issues
    Hi Amy,

    I finished treatment Oct 9th 2009 for tonsil cancer. 7 weeks of radiation and Erbitux (Chemo). I had a PEG put in about week of treatment when I could no longer eat. They gave me 'Ensure' and other canned rubbish which produced huge amounts of mucus and made life miserable. I realised I was intolerant to the feeds the hospital were using. they sent in the Hospital 'Nutritionist' who had the kitchen make special mixes for me but they all failed.

    I then found a product by Sunrider called 'VitaShake'. It comes in powered form in Sachets. I mixed it with 220ml (Approx) Rice Milk or Soy Milk and put that in the tube and that got me through and I still have one feed a day. You can google Sunrider or VitaShake and find a Sunrider shop or distributer as unfortunately it is a direct marketing company but the product worked well and I had my Naturopaths check it out and they all gave it a big thumbs up. We joined up as members and got the discounts so you can do that or find someone who is a 'seller'. You should find a distribution centre or be able to order and have it delivered as said google and find the nearest outlet.

    I also was prescribed 'Flumicil' which was in a tiny sachet, you mix with water and drink or put in the tube and that help break up the mucus. Your Dr can prescribe that as it works well but I would say his mucus is related to the feed and Dairy /Whey products.

    I hope this info helps.
    Scambuster in China
  • fishingirl
    fishingirl Member Posts: 188

    Mucus Issues
    Hi Amy,

    I finished treatment Oct 9th 2009 for tonsil cancer. 7 weeks of radiation and Erbitux (Chemo). I had a PEG put in about week of treatment when I could no longer eat. They gave me 'Ensure' and other canned rubbish which produced huge amounts of mucus and made life miserable. I realised I was intolerant to the feeds the hospital were using. they sent in the Hospital 'Nutritionist' who had the kitchen make special mixes for me but they all failed.

    I then found a product by Sunrider called 'VitaShake'. It comes in powered form in Sachets. I mixed it with 220ml (Approx) Rice Milk or Soy Milk and put that in the tube and that got me through and I still have one feed a day. You can google Sunrider or VitaShake and find a Sunrider shop or distributer as unfortunately it is a direct marketing company but the product worked well and I had my Naturopaths check it out and they all gave it a big thumbs up. We joined up as members and got the discounts so you can do that or find someone who is a 'seller'. You should find a distribution centre or be able to order and have it delivered as said google and find the nearest outlet.

    I also was prescribed 'Flumicil' which was in a tiny sachet, you mix with water and drink or put in the tube and that help break up the mucus. Your Dr can prescribe that as it works well but I would say his mucus is related to the feed and Dairy /Whey products.

    I hope this info helps.
    Scambuster in China

    Hi Scambuster! I googled
    Hi Scambuster! I googled VitaShake, and unfortunately it's too expensive for us:( Guess I'll have to stick to Ensure. Thanks though

    Fishingirl (Cindy)
  • LucyVance
    LucyVance Member Posts: 21
    Hang in there Amy!
    Hi Amy - Sounds like your poor guy is suffering quite a bit. We went through similar stuff after my husband had treatment for cancer on the back of his tongue. The mucous is very normal after this kind of treated - it's like cement, makes them feel like they are going to choke and seems to never quit. The good news is it will eventually go away..I haven't spoken to anyone who didn't get rid of it eventually. My husband also had a lot of blood coming up but he's doing well right now 1.5 years later, eating regular food all the time just using a smoothie to help it go down more easily. You've gotten a lot of good advice from people responding already. Hope your appointment went well. I'd insist on a Barium Swallowing Test as soon as possible to see if it is possible for him to begin swallowing at least thickened items. If it's not possible, the barium test results will give you an answer as to why he can't swallow and address the problem. For example, if his esophagus has closed they can begin stretching it with a balloon and that will eventually probably lead to him being able to swallow again. If you don't get results from your doctor soon, please seek out a more sophisticated center for swallowing therapy. It will save you a lot of heartache and get your guy on the mend faster. Take care of you too! Lucy
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    LucyVance said:

    Hang in there Amy!
    Hi Amy - Sounds like your poor guy is suffering quite a bit. We went through similar stuff after my husband had treatment for cancer on the back of his tongue. The mucous is very normal after this kind of treated - it's like cement, makes them feel like they are going to choke and seems to never quit. The good news is it will eventually go away..I haven't spoken to anyone who didn't get rid of it eventually. My husband also had a lot of blood coming up but he's doing well right now 1.5 years later, eating regular food all the time just using a smoothie to help it go down more easily. You've gotten a lot of good advice from people responding already. Hope your appointment went well. I'd insist on a Barium Swallowing Test as soon as possible to see if it is possible for him to begin swallowing at least thickened items. If it's not possible, the barium test results will give you an answer as to why he can't swallow and address the problem. For example, if his esophagus has closed they can begin stretching it with a balloon and that will eventually probably lead to him being able to swallow again. If you don't get results from your doctor soon, please seek out a more sophisticated center for swallowing therapy. It will save you a lot of heartache and get your guy on the mend faster. Take care of you too! Lucy

    update
    hi everyone. Just thought we'd let you know that Evan goes in for a Barium swallow study next Friday. I've been looking at this procedure on line & I'm curious if any has taken this test that was unable to swallow the barium liquid and if so what did they do? He can swallow in as much as it goes down to right below his adams apple then it just stops and has to come back up. I'm not sure if he will be able to get it down far enough to get an x-ray of the area needed.
    Thanks,
    Amy
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    update
    hi everyone. Just thought we'd let you know that Evan goes in for a Barium swallow study next Friday. I've been looking at this procedure on line & I'm curious if any has taken this test that was unable to swallow the barium liquid and if so what did they do? He can swallow in as much as it goes down to right below his adams apple then it just stops and has to come back up. I'm not sure if he will be able to get it down far enough to get an x-ray of the area needed.
    Thanks,
    Amy

    Barium swallow test
    Amy, I had my most recent barium swallow test within the last month (just prior to my first dilation, in fact).

    There is no need for concern with respect to whether they will be able to capture the action. If my own many tests are the rule, then hub will be asked to stand for this activity, and you can consider it more like an ultrasound than an xray, as it is live rather than a still shot, so to speak.

    He will be offered barium-'laced' stuff in various thicknesses, and as he tries to swallow them, the swallow experts will be watching the action on the screen as it takes place. I have watched it myself: you can see the stuff as it goes down, and you can see the throat muscles contracting and expanding and so forth, along with any possible aspiration (intake of the stuff into the wrong pipe, which is not a good thing).

    It is not a pass/fail test in the usual meaning of the phrase, Amy. If hub has issues with swallowing ably, then this is the place to find out, and to find out why. The folks I have had work with me during these tests have been through it over and over and are quite proficient in pointing out to me what is going on and when.

    (Yeah, they can see it live, but they can also play it back, like football replays, and may review the results with hub on the spot, maybe even asking him to perform some of them again while trying a trick or two that might assist him... in my case, this last time they were delighted that I had developed a mechanism of my own, a slight cough, an 'ahem', that forced stuff from slipping into my trachea (wrong pipe) and into my esophagus... they were quite pleased, and therefore, so was I.)

    There is no pain involved at all, Amy. And it is always rewarding to learn the reasons for those things that are perhaps frustrating us most, along with possible ways to correct them.

    Best wishes to hub, of course.

    Take care,

    Joe
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    still can't swallow
    Evan went to the ENT Tuesday & they said the CT & the scope both looked good. They no longer see the tumor & both vocal chords seem to be working(before only right side was working). He went for his Barium swallow today & all muscles are working fine. They couldn't tell why he isn't able to swallow. While he was in there they went into another room to talk, but he could still hear them. They were talking about how this isn't right. He finished radiation the first of September & they were saying how this long out of radiation he should be able to swallow by now. One of the ladies did tell him there was still some swelling but not enough to cause this. Been told so many times how something is "not normal,yet not unusual either. Let's see what happens", that you're pretty confident that they really don't have a clue about it either. Would appreciate any help or advice.

    Thanks,
    Amy & Evan
  • Nidociv
    Nidociv Member Posts: 12

    still can't swallow
    Evan went to the ENT Tuesday & they said the CT & the scope both looked good. They no longer see the tumor & both vocal chords seem to be working(before only right side was working). He went for his Barium swallow today & all muscles are working fine. They couldn't tell why he isn't able to swallow. While he was in there they went into another room to talk, but he could still hear them. They were talking about how this isn't right. He finished radiation the first of September & they were saying how this long out of radiation he should be able to swallow by now. One of the ladies did tell him there was still some swelling but not enough to cause this. Been told so many times how something is "not normal,yet not unusual either. Let's see what happens", that you're pretty confident that they really don't have a clue about it either. Would appreciate any help or advice.

    Thanks,
    Amy & Evan

    Swallowing
    Hello Amy & Evan- Just wanted to let you know that its just not Evan that is still not able to swallow. I finished my radiation treatments on Oct.27.08, Yes almost 14 months ago and I am just able to swallow some things now. I wasn't able to swallow anything until July, when I was able to start swallowing soft things like Ice Cream, Mashed Potatoes with gravy and broths. Now I am able to eat scrambled and soft eggs, french toast and a few other things. Of course these are very small bites and lots of liquid to get it down. My mouth opens only a small percentage of what it use to. I even took 47 Vital Stim Treatments which I had to drive 50 miles each time and still could not swallow any more. I ended those in August and just started trying to eat things on my own. I also have had to 2 barium swallows done and they told me both times that my epogalotis(spelling) was still swollen. My ENT scopes me every time I am there and says things are healing fine and some people take longer than others to heal so just give it time. I met a guy in Chemo who had the same cancer as I did (base of tongue) same Chemo,same number of radiation treatments. He finished treatment 1 month before me and was eating almost normal by time I finished. So yes people are different. Hope I don't discourage you and hope that your swallowing comes back way before the time it has taken me. I would say don't get down, it will come, give it time. I still use my PEG tube every day for nutrition and med intakes cause I don't get enough by mouth yet. If I can be of anymore help, please let me know.. Take Care and I wish you all the best..Randy in Ohio
  • Scambuster
    Scambuster Member Posts: 973

    still can't swallow
    Evan went to the ENT Tuesday & they said the CT & the scope both looked good. They no longer see the tumor & both vocal chords seem to be working(before only right side was working). He went for his Barium swallow today & all muscles are working fine. They couldn't tell why he isn't able to swallow. While he was in there they went into another room to talk, but he could still hear them. They were talking about how this isn't right. He finished radiation the first of September & they were saying how this long out of radiation he should be able to swallow by now. One of the ladies did tell him there was still some swelling but not enough to cause this. Been told so many times how something is "not normal,yet not unusual either. Let's see what happens", that you're pretty confident that they really don't have a clue about it either. Would appreciate any help or advice.

    Thanks,
    Amy & Evan

    Maybe seek Alternative advice
    Hi Amy and Evan,

    Have you though about seeing a Naturopath ? You might get some answers and even a remedy that will help Evan's condition. If you do seek one, try to find one that has experience with Cancer Patients as they will have a good handle on the situation.

    I am 9 weeks out after tonsil cancer surgery, 7 weeks rads and Erbitux and eating fine now. I take a bunch of supplements and am now starting a course of homeopathic remedies to see if we can revitalized my damaged Salivary Glands. Homeopathic remedies can be very powerful. And may be your salvation.

    I had my PEG out last week and also got clear result on my PET CT so all going well. I really think the Naturopaths advice and the supplements have helped me. Unfortunately your regular Doctors will pass them off as Witches and Warlocks which is a shame as they can help a great deal. At the same time the doctors have no answers to your problem. I'm sure a good Naturopath will have answers.
    Good luck with it.

    Cheers
    Scambuster
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    Maybe seek Alternative advice
    Hi Amy and Evan,

    Have you though about seeing a Naturopath ? You might get some answers and even a remedy that will help Evan's condition. If you do seek one, try to find one that has experience with Cancer Patients as they will have a good handle on the situation.

    I am 9 weeks out after tonsil cancer surgery, 7 weeks rads and Erbitux and eating fine now. I take a bunch of supplements and am now starting a course of homeopathic remedies to see if we can revitalized my damaged Salivary Glands. Homeopathic remedies can be very powerful. And may be your salvation.

    I had my PEG out last week and also got clear result on my PET CT so all going well. I really think the Naturopaths advice and the supplements have helped me. Unfortunately your regular Doctors will pass them off as Witches and Warlocks which is a shame as they can help a great deal. At the same time the doctors have no answers to your problem. I'm sure a good Naturopath will have answers.
    Good luck with it.

    Cheers
    Scambuster

    thoughts
    Scambuster, you are on the money much of the time, but I must take exception with some parts of this post.

    First, the statement that you are sure "a good Naturopath will have answers" is baseless and seems to presume that such a person is more qualified to treat the problem than licensed medical professionals. I dispute that notion strongly.

    Second, the idea that doctors, today, toss off the notion of alternative therapies (whether 'Naturopath" is among them, I do not know) as the work of witches and wizards is also completely off-base. It happens that MDA in Houston, for one, has been working with doctors and others in China in consideration of the benefits of alternative therapies to good effect. And even though even the Chinese folks are strident in their insistence that one not abandon traditional Western medicine for the Chinese way, there is agreement that some of these alternatives seem to help.

    That is but one effort that I am aware of. There is gathering wide-spread acceptance of alternative therapies, in fact, not as complete alternatives (as the Chinese docs themselves warned), but as additives in some situations.

    Western medicine, scambuster, is science, and science does not, when it is true to itself, sell anything short.

    As to Amy and Evan, please by advised that scar tissue from radiation and/or surgery is a very real possibility, as someone has suggested. I still, four years later, have surgical and radiation scarring and swelling, some of which is probably permanent.

    Also, be advised, Amy, that even four months later, your husband may still be 'cooking'. Radiation treatment does not end with the last treatment. The 'cooking' continues, at least for a few months, probably more.

    That said, if the docs and the nurses are finding nothing unusual, I would be curious myself as to the nature of the problem.

    Perhaps patience is the answer?

    Take care,

    Joe
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    thoughts
    Scambuster, you are on the money much of the time, but I must take exception with some parts of this post.

    First, the statement that you are sure "a good Naturopath will have answers" is baseless and seems to presume that such a person is more qualified to treat the problem than licensed medical professionals. I dispute that notion strongly.

    Second, the idea that doctors, today, toss off the notion of alternative therapies (whether 'Naturopath" is among them, I do not know) as the work of witches and wizards is also completely off-base. It happens that MDA in Houston, for one, has been working with doctors and others in China in consideration of the benefits of alternative therapies to good effect. And even though even the Chinese folks are strident in their insistence that one not abandon traditional Western medicine for the Chinese way, there is agreement that some of these alternatives seem to help.

    That is but one effort that I am aware of. There is gathering wide-spread acceptance of alternative therapies, in fact, not as complete alternatives (as the Chinese docs themselves warned), but as additives in some situations.

    Western medicine, scambuster, is science, and science does not, when it is true to itself, sell anything short.

    As to Amy and Evan, please by advised that scar tissue from radiation and/or surgery is a very real possibility, as someone has suggested. I still, four years later, have surgical and radiation scarring and swelling, some of which is probably permanent.

    Also, be advised, Amy, that even four months later, your husband may still be 'cooking'. Radiation treatment does not end with the last treatment. The 'cooking' continues, at least for a few months, probably more.

    That said, if the docs and the nurses are finding nothing unusual, I would be curious myself as to the nature of the problem.

    Perhaps patience is the answer?

    Take care,

    Joe

    amy_evan
    Joe is likely very correct- the ultimate authority should rest with Drs. of 2009-2010. This is the way it is with me. 8-months after my last rad, I appear to still be losing gum tissue; so, yes, Joe is right about it staying with one for many months. Though my mouth took the larger hit, my throat was rad-zapped, and my Onco still sees swelling there- 8 months after. And I have disappointment in the smaller matters of necessity that my medical team have made like don't exist. Still, they have done so much good for me- they are the lead in my physiscal recovery. UNDERSTAND, though, that your role in that recovery is critical- when the need be, you must be very aggressive in seeking answers and help.

    Scambuster's arguement does have logic, though, as the naturopathic way may be able to help- but likely should be relegated to a supportive role. Hondo's way appears to be working for him- to stop the cancer's growth; and, bottom-line, I am also one who believes that the Lord put the means on Earth to heal any and all ailments, which for me includes cat's claw, glutamine powder, and possibly cell salts.

    The physical act of swallowing seems instinctual, but there are nerves and muscles/tissue which come into play with this simple function. Seems to me that something may have been damaged by the cancer or treatment to the degree it is no longer functioning enough to let the swallowing happen. The Drs. must recognize the fact that there is a problem area. They should focus their attention on where the damage is, in hopes of being able to find and repair. I would suggest that if your ENT Dr. does not understand this, and cannot find the problem area- that you seek the answers from another ENT/Onco, perhaps at one of the leading centers for such. I know this may present financial hardship, etc.; but, going forward, we are talking about necessity.

    I never lost the ability to swallow (NPC), though for some time could only down water, and with difficulty. And yes, the tube I had installed in 1/09 is still with me, and there was a good two months that my only nutrition was ingested thru the tube via 4.0 formula. Do not let yourself lose hope- believe you will get past this complication, and you will.

    kcass
  • Scambuster
    Scambuster Member Posts: 973

    thoughts
    Scambuster, you are on the money much of the time, but I must take exception with some parts of this post.

    First, the statement that you are sure "a good Naturopath will have answers" is baseless and seems to presume that such a person is more qualified to treat the problem than licensed medical professionals. I dispute that notion strongly.

    Second, the idea that doctors, today, toss off the notion of alternative therapies (whether 'Naturopath" is among them, I do not know) as the work of witches and wizards is also completely off-base. It happens that MDA in Houston, for one, has been working with doctors and others in China in consideration of the benefits of alternative therapies to good effect. And even though even the Chinese folks are strident in their insistence that one not abandon traditional Western medicine for the Chinese way, there is agreement that some of these alternatives seem to help.

    That is but one effort that I am aware of. There is gathering wide-spread acceptance of alternative therapies, in fact, not as complete alternatives (as the Chinese docs themselves warned), but as additives in some situations.

    Western medicine, scambuster, is science, and science does not, when it is true to itself, sell anything short.

    As to Amy and Evan, please by advised that scar tissue from radiation and/or surgery is a very real possibility, as someone has suggested. I still, four years later, have surgical and radiation scarring and swelling, some of which is probably permanent.

    Also, be advised, Amy, that even four months later, your husband may still be 'cooking'. Radiation treatment does not end with the last treatment. The 'cooking' continues, at least for a few months, probably more.

    That said, if the docs and the nurses are finding nothing unusual, I would be curious myself as to the nature of the problem.

    Perhaps patience is the answer?

    Take care,

    Joe

    Heavy Reply
    Joe,

    I am a firm believer in 'Complimentary Medicine' which is what you have described where in the case mentioned (MDA Houston) are working with alternative therapists. I have done so for nearly 30 years. I also understand John Hopkins have adopted Complimentary Treatments which is very encouraging. But to say this was the 'norm' - I would have to disagree. I wish it were not so.

    While some Doctors will openly accept and welcome 'alternative opinions' from non-Western medical practitioners, the bulk of them don't and many are extremely 'anti-alternative'. Hence the Witches and Warlocks comments. I did not intend to presume Amy and Evans' doctors were thinking that way so apologies if it sounded as such. I have struck a good many Western doctors including my own current team who dismiss anything but their own conventional advice and methods as Hogwash. (They are regarded as among the best in HK and 4 out of 5 are HK Chinese and they also dismiss Chinese Medicine as irrelevant in the field of Oncology)

    To cut to the chase - Amy and Evan are screaming for answers to their problem. Their Doctor(s) have hit a brick wall. While in my last sentence(s) of the post above, I may have over stepped the mark by saying a Naturopath WILL have answers I should have written 'MAY'. As I recommended, seeking one with experience with Cancer patients is a key criteria, as there may be options with their treatments which may help.

    I have never suggested to abandon their conventional Doctors nor have I done this myself, but I believe I have benefited in my recovery with the help of Naturopaths. These benefits came from Homeopathics, Supplements and Nutritional/ Dietary advice.

    I can site many a case to support what I am saying from experience personally, through friends, and with a Naturopath in my family, many a sad tale of what Western Doctors have left in the 'too hard basket' once they've exhausted their abilities.

    Joe's suggested causes of Evan's dilemma may be spot on. I have no idea.

    In closing I do hope Evan and Amy do seek an opinion from a Naturopath in the way I have recommended, to establish if there is any benefit or solution using 'Complimentary' treatments and/ or remedies for their problems.

    A Naturopath with experience with Cancer patients will generally be very aware NOT to administer any treatment that may interfere with existing treatments/medications that the patient is on. The sharing of any new advice given with the Oncologist(s) will determine which camp they are in.

    Thanks for your comments Joe.

    All the best with your recovery Evan, I hope whichever way you go you find relief soon.

    Regds
    Scambuster
  • amy_evan2005
    amy_evan2005 Member Posts: 39

    still can't swallow
    Evan went to the ENT Tuesday & they said the CT & the scope both looked good. They no longer see the tumor & both vocal chords seem to be working(before only right side was working). He went for his Barium swallow today & all muscles are working fine. They couldn't tell why he isn't able to swallow. While he was in there they went into another room to talk, but he could still hear them. They were talking about how this isn't right. He finished radiation the first of September & they were saying how this long out of radiation he should be able to swallow by now. One of the ladies did tell him there was still some swelling but not enough to cause this. Been told so many times how something is "not normal,yet not unusual either. Let's see what happens", that you're pretty confident that they really don't have a clue about it either. Would appreciate any help or advice.

    Thanks,
    Amy & Evan

    esophegeal dilation
    Took me until today to finally get a nurse to call me back, but after my conversation with her after she told me the Dr. was going to Venezuela Friday for Christmas & she wouldn't be able to see him until after the first of the year. Must have done something because after she went back to talk to the doctor I received another call to tell me they got him in @8:15 in the morning with an upper gi specialist to dilate his esophagus.

    I know it's short notice but I'd appreciate any advice for this as what to expect. Going on line now to see what I can find. Will check back in little while.

    thanks,

    Amy & Evan
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    Heavy Reply
    Joe,

    I am a firm believer in 'Complimentary Medicine' which is what you have described where in the case mentioned (MDA Houston) are working with alternative therapists. I have done so for nearly 30 years. I also understand John Hopkins have adopted Complimentary Treatments which is very encouraging. But to say this was the 'norm' - I would have to disagree. I wish it were not so.

    While some Doctors will openly accept and welcome 'alternative opinions' from non-Western medical practitioners, the bulk of them don't and many are extremely 'anti-alternative'. Hence the Witches and Warlocks comments. I did not intend to presume Amy and Evans' doctors were thinking that way so apologies if it sounded as such. I have struck a good many Western doctors including my own current team who dismiss anything but their own conventional advice and methods as Hogwash. (They are regarded as among the best in HK and 4 out of 5 are HK Chinese and they also dismiss Chinese Medicine as irrelevant in the field of Oncology)

    To cut to the chase - Amy and Evan are screaming for answers to their problem. Their Doctor(s) have hit a brick wall. While in my last sentence(s) of the post above, I may have over stepped the mark by saying a Naturopath WILL have answers I should have written 'MAY'. As I recommended, seeking one with experience with Cancer patients is a key criteria, as there may be options with their treatments which may help.

    I have never suggested to abandon their conventional Doctors nor have I done this myself, but I believe I have benefited in my recovery with the help of Naturopaths. These benefits came from Homeopathics, Supplements and Nutritional/ Dietary advice.

    I can site many a case to support what I am saying from experience personally, through friends, and with a Naturopath in my family, many a sad tale of what Western Doctors have left in the 'too hard basket' once they've exhausted their abilities.

    Joe's suggested causes of Evan's dilemma may be spot on. I have no idea.

    In closing I do hope Evan and Amy do seek an opinion from a Naturopath in the way I have recommended, to establish if there is any benefit or solution using 'Complimentary' treatments and/ or remedies for their problems.

    A Naturopath with experience with Cancer patients will generally be very aware NOT to administer any treatment that may interfere with existing treatments/medications that the patient is on. The sharing of any new advice given with the Oncologist(s) will determine which camp they are in.

    Thanks for your comments Joe.

    All the best with your recovery Evan, I hope whichever way you go you find relief soon.

    Regds
    Scambuster

    check
    Points well taken, scambuster. My response was indeed heavy in its tone, as I WAS making a presumption on your part. As always, my concern is for people burdened by cancer and I tend, admittedly, to get a bit overamped by the merest hint of, well, to borrow from your own moniker, scams aimed at people when they are most vulnerable.

    Please accept my apology for the 'heavy reply'. It will never happen again, I assure you, until the next time it happens :).

    Take care,

    Joe
  • hamlettaz
    hamlettaz Member Posts: 1

    esophegeal dilation
    Took me until today to finally get a nurse to call me back, but after my conversation with her after she told me the Dr. was going to Venezuela Friday for Christmas & she wouldn't be able to see him until after the first of the year. Must have done something because after she went back to talk to the doctor I received another call to tell me they got him in @8:15 in the morning with an upper gi specialist to dilate his esophagus.

    I know it's short notice but I'd appreciate any advice for this as what to expect. Going on line now to see what I can find. Will check back in little while.

    thanks,

    Amy & Evan

    Nutrition
    Just some information I have tried, Theres a company called Apria they have helped my a lot with feeding option, one of the feeding stuff I have been in and it works great is Isosource 1.5 cal/ I didnt have the money but they helped me with cost. they phone number is 1-800731-927-9960. Akso you can get help throught a program called Ross patient program, you can download the app: at www.helpingpatients.org or www.pparx.org. you get 3 free cases of ensure a month. Good luck
  • dream123
    dream123 Member Posts: 2
    I too have difficulty swallowing To AMY AND EVAN
    I completed 35 treatments of radiation and 5 chemo treatments on May 12 2009 and I have difficulty swallowing, its been 8 months. I have an appointment with the doctor that put my feeding tube in. The doctor will exam me to see if I qualify to have a Flexiable Eating Exam of the Swallow. FEES for short.This exam will show what happens when I swallow, answers why some of the food depending on its texture when I swallow comes back up and through my nose!

    I too have mucus coming up after I have my can of Peptamen ( 6 cans daily). The milk ingredients I suspect causes the mucus. The oncologist nurse told me to drink more water through my feeding tube. As a routine I drink 2 cups of water for each meal, which helps cut down on the mucus. When I eat soft foods (puree) there is no mucus because its usually baby vegetable puree foods.

    I am treated by a Speech Pathlogist for my swallowing. My insurance will cover 12 treatments and he tells me I should be able to eat solid foods that's why I am going to have the FEES to help assist to get to my goal (eating solid foods).

    Keep in touch with me and by the way my cancer was at the base of my tongue where a tumor was shrinked after the radiation and chemo treatments. I see my ENT every six weeks and will be scheduled for an Annual MRI sometime in June 2010, to see if I continue to be Cancer Free.

    Bless you and your Hub. Time is our friend to heal, please keep in touch. My email is howglows@yahoo.com
    Hope to hear from you Dream123