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difficulty swallowing after radiation for throat cancer

amy_evan2005
Posts: 42
Joined: Nov 2009

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.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

amy_evan2005
Posts: 42
Joined: Nov 2009

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

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

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
Posts: 42
Joined: Nov 2009

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's picture
SASH
Posts: 287
Joined: Apr 2006

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's picture
Scambuster
Posts: 973
Joined: Nov 2009

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's picture
fishingirl
Posts: 188
Joined: Nov 2009

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)

micktissue's picture
micktissue
Posts: 430
Joined: Dec 2009

I just re-read this. I've been feeding on Peptamen (Soylent Green), a whey based formula from Nestle. I'm looking at the cases of the stuff and thought "why do I need this when I'm battling all this mucus?"

My wife found something at Whole Foods (sometimes referred to as Whole Paycheck here) called "Ultimate Meal" (UM) a veggie based source of all the same nutritional components as the Peptamen so we're going to give that a try for a while. If I can maintain my weight on the UM I'm going to send the Peptamen back.

I'll keep everyone posted.

Best,

Mick

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

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
Posts: 42
Joined: Nov 2009

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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
Posts: 42
Joined: Nov 2009

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's picture
Nidociv
Posts: 10
Joined: Sep 2009

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

VaTad
Posts: 1
Joined: Jan 2010

Very interested if possible in keeping up with you. I finished my treatments in March'09 and have been on again off again with being able to swallow anything (no food). Just recently was sent to speech therapist and told to do exercises and can now do a little water but have to be careful about aspiration.

Jim in Virginia

Hondo's picture
Hondo
Posts: 6056
Joined: Apr 2009

Just want to welcome you here to CSN. I believe the treatment affects all of us here who have cancer in the head or neck in different ways, some do well and others not as good. I too have problems swallowing but I note that it depends on the type of food, meat is too hard for me to chew and very hard to swallow, but I do ok with veggies. From your post I see you can’t handle any type food, keep doing the exercises and I will put you on my prayer list if you don’t mind.

Take care

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

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's picture
Scambuster
Posts: 973
Joined: Nov 2009

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

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

amy_evan2005
Posts: 42
Joined: Nov 2009

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

hamlettaz
Posts: 1
Joined: Dec 2009

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

bobs95148
Posts: 2
Joined: Jan 2010

Amy: I just joined this group today and was curious how the esophegeal dilation went. My situation is very simular to your husbands. It's ben 2 months since the treatments ended, but I'm still unable to swallow. When I try to swall something I "cough" it back up (more like an attempt a vomiting). I also have quite a bit of mucous although much less now, I wake up about every hour to spit and I cough up small aounts of blood. I'm seeing my ENT on Monday and I'll keep you posted.

Please let us know how your husband is doing.

Bob

amy_evan2005
Posts: 42
Joined: Nov 2009

Dear Bob,
When they went in to dilate they found that his esophagus is completely scarred closed. They are now sending him to a general surgeon to run a scope through his stomach up & one down his throat at the same time to see how large the blockage is & if they can put an opening in it to dilate. We have been telling them since August that their is something blocking it, but they just kept putting us off with it's the swelling from radiation or from something else. The blockage appears to be directly behind his voicebox where the radiation was aimed. He also has to "cough" up if he tries to swallow anything. Even his own saliva. He has to carry a bottle with him at all times for the saliva.
There is also alot of helpful info on the esophageal discussion board if you have'nt been there yet. Especially about dilating the esophagus. I'm assuming you have a feeding tube in. We have recently decided to start using homemade foods through the tube. He is fuller & has a more satisfied feeling. Also his mucous seems to be getting better since we have replaced "real food" for the ensure plus. He was on Isosource, but it upset his stomach.
He still uses the ensure, but not as many. It takes a little more time to fix the real food, but it's worth it. Check out Lucy's website. The site is listed in an earlier entry.
Any questions you have please let us know & we'll be glad to help if we can. We've gotten more done since I found this website in Nov.than was done since July. Mainly because we've been able to ask the right questions now & when we don't like the answer telling them what we want done not what they want to try out for another month or so. This is almost all from what we have learned from others on this site.We also have a couple of discussions on the esophageal board with some more info.

Thanks & good luck Monday!!
Amy & Evan

P.S.
Have you had a Barium Swallow Study yet?

bobs95148
Posts: 2
Joined: Jan 2010

Hi Amy:
Thanks for your reply. I do have a feeding tube, and I'm using Isosource. Ocassionaly my stomach gets upset after about the 5th or 6th can (the Nutrionist says I should be using about 7 cans a day but I stop after 6). We're almost identical. I get similar responses about the swelling etc. But I think in my case it's still a bit early (about 2 months since the treatments stopped).

I haven't done the Swallow Study yet, but I think they're about to get a speach therapist involved. If that doesn't work, I think the next step is the Swallow Study.

I will check out the other sources of information that you mentioned.

Thanks for your reply and I hope your husband gets better soon.

bob

enkido
Posts: 7
Joined: Jan 2010

What type of treatment was done for this blockage? I have not been able to swallow since my radiation treatments started August 26 2009. I got a PEG in September and use Jevity 1.5.
Yesterday my Digestive Specialist, did an endoscopy with the intention of doing a dilation.
When I was in the recovery room the Doctor said he has seen every type of problem there is, but never seen a throat completely blocked by scar tissue, as mine is. Could this be excess radiation?
I have been referred back to my ENT doctor, but want to know what to expect.
I have already had the Barium swallow test weeks ago with no success.
Regarding nutrition, I'm putting pureed vegetables and fruits in my PEG. It usually requires an equal amount of water. When I started treatment ( 2 chemo and 35 radiation), I weighed 235 pounds, today I'm 168 pounds. So now more than ever I need the PEG. Avocados, sweet potatoes and navy beans have lots of calories.
Good luck to all you Warriors out there.
Enkido

Una
Posts: 12
Joined: Oct 2010

Hi Enkido how are you. I joined the forum a couple of days ago and came across your post. I have had the PEG tube for a year and 3 months. Doctors were unable to dilate my oesophagus because the stricture was too tight and I was unable to swallow barium. Have you made any progress with your swallowing since? I hop you have. Or I would love to hear from anybody who may have advice

Una
Posts: 12
Joined: Oct 2010

Hi Enkido. How are you? I joined the forum a couple of days ago. I am on a PEG tube for a year and 3 months. Doctors were unable to widen my oesophagus because the stricture was too tight and I was unable to swallow barium after the attempted dilation. Have you made any progress since with your swallowing. It would be good to hear from you or anybody with advice

debbiejeanne's picture
debbiejeanne
Posts: 2761
Joined: Jan 2010

Amy and Evan, I also learned from this site. I had no idea what to ask my doc b/c I had no idea what was wrong. I didn't even know my cancer had a name!! I learned EVERYTHING I know about my cancer from HERE!! Nobody told me anything except, I had cancer. I am sure many others were just like us.
All, you sharing your experiences really does help others so hang in there and keep on posting!!! Thank you to all who do!
God Bless,
Debbie

Bugalatta
Posts: 2
Joined: May 2010

Does anyone have any suggestions as to which baby foods or pureed foods might help replace a can or two of Ensure down g-tube each day so I can eventually wean myself from Ensure which I, too, believe helps aggravate mucus. I am having the same difficulty swallowing and 'coughing' back up too and trying to be patient but easing stomach (and mucus!) from Ensure would be nice in the meantime.

Thanks!

Bugalatta

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

HI Bugalatta,

I was intolerant to the Ensures and hospital muck. I found and used Vitashake - made and sold by Sunrider. It is made from 100% Plant Based natural ingredients. It is sold through distributors or from their outlets. It is a MLM Co. but don't let that get in your way. The product is very good. I joined and get a 20 or 25% discount. Do a Google search to get their Toll free No.s and nearest location. There are some other similar products. Look for 'Dairy Free'.

Vitashake comes in sachets as powder. 10 Sachets per box.

I mixed mine with Rice Milk and you can also use Soy or Almond milk or rotate among those. I used 200ml per serve so you get about 400 cals each Shake and 200ml is a good size for the tube. I put mine in via the PEG from week 3 of treatment till about 2 mths post treatment and still take one a day now but the normal way with my cereal and fruit in the morning. During treatment I only managed 3-4 a day but it kept me alive.

It may be a a little expensive but I have no comparison and also think my health was worth it regardless. I had mucus issues but nothing compared to many people here and I give credit to this product.

PM me if you need more info.

Cheers
Scambuster

Bugalatta
Posts: 2
Joined: May 2010

Aloha, Scambuster and thanks for the info. I did google Vitashake and Sunrider and yes, was put off by MLM but will go back and look again. Also googled g-tube real food recipes and some really great ones came up for every day which I'm going to try. You're right, your health is worth the very best!

Bugalatta

dream123
Posts: 2
Joined: May 2009

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

amy_evan2005
Posts: 42
Joined: Nov 2009

Dream123,
I have attempted to email you & it says it is not correct address. Here is my e-mail address, amy_evan2005@yahoo.com. Mail me something so it will be in there right.

Thanks,
Amy

dream123
Posts: 2
Joined: May 2009

I was unable to email using combinations of the email address such as amyevan@yahoo.com, AmyEvan@yahoo.com and Amy Evan@yahoo.com

Try my E-Mail again at howglows@yahoo.com
my email address has no spaces.

I will be going to a gastroenerologist on Monday the 18th of January, he will evaluate me to see if I qualify for a FEES Exam. Fexiable Eating Exam of the Swallow "FEES" for short. The
exam will show what is happening when I swallow. I can swallow juice, water and puree food. I puree food in my blender which tastes good, I still have my taste buds thanks to the Lord. The exam will help me to reach my goal of eating solid foods. I still have mucus but not too much because I try to have two cups of water for each time I have my meal through the feeding tube. My bowel movements have been regular where I don't have to depend on using suppositories laxative because I drink lots of water through the feeding tube. My swallow is small amounts I try to swallow at least 12 to 15 TBSP. of my prepared puree food.

Hope to hear from you, please try again my email address
howglows@yahoo.com
God Bless Both Of You DREAM123

amy_evan2005
Posts: 42
Joined: Nov 2009

Hello again,

I am giving you my email address in case i can't get through to yours. It is amy_evan2005@yahoo.com. Hope to hear from you soon. I normally check my email at least twice a week.

Best wishes,

Amy

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I'm on my 5th week of recovery from chemo and radiation, if it wasn't the pain killer I was given, I wouldn't be able to eat anything, my throat is general sore, and worst when I get up in the morning, I'm still coughing Phlem, seems worst when I sit? I gained 10-lbs. YEAH, but am wondering when I can look forward to not having this sore throat in the future, I know the Phlem will slow down and stop, it has ceased somewhat. I go back to another oncologist Monday to see what can be done, from what I've been threw, my voice continues to get stronger, and I can speak, but my voice tires throughout the day, I didn't take any rest, I worked throughtout my chemo and radiation, (That was a Feat in itself)....Any Feed Back would be apprecited. You People have become my friends and good positive support. Thanks. Dennis

debbiejeanne's picture
debbiejeanne
Posts: 2761
Joined: Jan 2010

Dream, I am 21 wks post 35 rad trmnts and I still have a lot of trouble swallowing. I'm glad I saw your post b/c I'm getting my tube out next Wensday and I'm going to ask him to dilate my throat while he's at it. My husband has mentioned that several times but was sure how it would be done so I never really followed up with it (to many details to deal with and I'm not good with details any more....lol). No doctor has ever mentioned a Speech Path. If dilating my throat doesn't help, that is what I'll do next. Thank you so much for sharing your experiences, as you can see, people truly learn from this site :0)
You will be in my prayers.
God Bless,
Debbie

enkido
Posts: 7
Joined: Jan 2010

I finished radiation Oct. 16th, 2009. It took until now and a barium swallow test plus three endoscopy test to realize my throat is scarred shut. I now have been referred to MD Anderson, hospital Houston TX. My question is How long did it take after the test you described before they did the stint and dilation?
Thanks
God Speed in your recovery
Enkido

amy_evan2005
Posts: 42
Joined: Nov 2009

hi everyone & welcome Enkido,
I have been without computer so i haven't been able to stay in contact. Evan is finally {hopefully} going to have his surgery on March 22nd. Evan has now lost about 60 lbs. We have a general surgeon that has hooked us up with a different ent dr. They are doing the surgery together but they aren't sure they can get it open. The general surgeon did inform us that the reason this surgery isn't normally done is because a stint should be put in place before it closes all the way. At least enough to swallow saliva. Then from that opening they can start to dilate when swelling is down. If you are like us we don't understand how they could look so many times and not see the blockage. The mucous is getting better but still alot. Of course not being able to swallow your own saliva is bad enough. If anyone would like to speak with me or ask any questions you can reach me at 317-504-5623. If i don't answer just leave message and I will return your call.

Thanks and good luck,
amy & evan

amy_evan2005
Posts: 42
Joined: Nov 2009

The time it has taken from barium to surgery is Nov. to present{still haven't had}. Hopefully your dr.'s are quicker than ours. If not call and bug them tell them what you want done and asap. Unfortunately once you stop allowing them to put you off by not being so nice they seem to get a little quicker.

amy_evan2005
Posts: 42
Joined: Nov 2009

The time it has taken from barium to surgery is Nov. to present{still haven't had}. Hopefully your dr.'s are quicker than ours. If not call and bug them tell them what you want done and asap. Unfortunately once you stop allowing them to put you off by not being so nice they seem to get a little quicker.

c7mckinc
Posts: 1
Joined: Apr 2010

Amy,
I finished my radiation back in June 2009 and have been unable to swallow since. At first the radiologist and oncologist talked as though I should have been swallowing all along, making me feel like I was losing my mind. Then my ENT doctor told me that the radiation causes the tissues inside the throat to become like cement and that I was doing fine and it was going to take between 12 and 18 months before I would be able to swallow again. Upon telling my radiologist and oncologist what the ENT said, they finally agreed. The gastrointerologist tried doing a barium swallow on me back in December 2009 and I almost choked to death on the barium. We could NOT get anything down. He then tried a scope at the local hospital since they have smaller scopes than in the office and he was unable to get anything down my throat as they said my esophagus was now the size of a straw. I have been pumping eight cans of Ensure in my peg tube for going on ten months now. I have noticed that my saliva is NOT thick and white and foamy anymore. I can only give you the same hope my ENT gave me, be patient and I keep my target date of 18 months out there to look forward to. I know this might not be what you wanted to hear, but I was relieved when someone finally had the guts to tell me the truth, so I wouldn't think I was losing my mind anymore.
Elizabeth

amy_evan2005
Posts: 42
Joined: Nov 2009

Hello everyone,
Just wanted to let everyone know how evan is doing. We found him another doctor that was able to {with the help of a Thorasic surgeon} get his esophagus open. He still isn't able to swallow, but he's getting there. They removed his trach this past Tuesday. They thought it might be inhibiting his ability to swallow. It does seem to have helped some.
I have to go for now,but I am back online so I will be posting again soon.

Thanks,
Amy & Evan

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I have a l/s dead larnyx and they removed a tumor with radiation and chemo, pure hell, sorry, but my life is turmoiled, they went in about 3 weeks ago remove dead radiation tissue, and i woke up with a trach, I'm sorry, for all the postive messages from the doctors of how it was needed and you will be able to breath easier is be on me!!!!, I feel like I'm suffocating, I cough and phlem more than ever, and worrying about blood etc. THIS IS NOT CUTTING IT!!!!Besides being a mental and physical eyesore, have to suction, there has to be alternatives. They said they would see in 2 weeks after my radiation had gotten any better, in replacing good tissue with the bad, I think they got carried away with the radiation and fried me. I'm going tomorrow to see about another trach, please amy and evan, i want to see what they say, I can't do this, sorry, thanks, i keep everyone here in my prayers, and want to hear answers of a positive cure, not, we'll see, could be, we'll have to wait....as you can see i ready to knock walls out..take care. Dennis

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Dennis sorry to hear about all the issues and troubles you have had. Maybe I can help a bit with the trache. I have had mine for a year now and in the beginning it was a nitemare because your body has to learn to breathe thru a hole in your neck. Coughing is good and you will do quite a bit of it for the first month or so then it will get better. Do you use a humidifier with it? I sleep with a hot and humid humidifier attache to my trache every night. It helps replace the moisture lost by not breathing thru your nose. Thats where we get the moisture for our lungs. It helps makes the mucus and pleghm loose and easier to cough up. It took me a few weeks to adjust to mine. I have an unexplained tumor on the base of my tongue growing into my tonsil area so I had to have mine placed because the tumor cuts off my airway. And I still suction but not as often. If you aren't being humidifed then call your dr. immediately and have him get you a machine. It is just like the ones they use in the hospital. It's a pain in the butt but definitly makes things easier. I understand the mental and emotional end of the trache. it is an eyesore. I am assuming they have you in a SHiley..it is a big plastic white one. If so ask your dr. for a Jackson one. The are metal, smaller, and all you have to do to speak is place your finger over the hole. And you will have much less infection with it. Best of luck and if you need anything just ask.
Debbie

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Hello Debbie, Thanks for the message back, i went to the dr yesterday and my airway seemed to open a slight bit, so we down sized the trach, yes, i'm stuck with it for 4 more weeks so we can try to cap it and i can breath with out it, i put the cap on and feels like a pillow, so i will try shorter starts, the problems stems from phlem, especially in the morning, i have to empty my throat out to eat, yes i can eat after my pain pills, the problem stems from radiation of my throat and killing the cells, over cooked, so it is taking longer for new growth, I am scheduled to see a new doctor that uses hydrogen treament, for 2 hours a day, we will see, they said this would speed up recovery and hopefully a better outcome. I
'm sorry, mentally the trache has thrown me for a loop, i keep it covered with a hankerchief. Debbie, question please, did your phlem stop over time, mine seemed to the end when they place this piece of plastic in my throat, now it's started back over again. Also I work in retail, I have gone to part time which is going to be a struggle for money, I am going to file for SSI dissability, and input. Please let me know, And thanks for your help. P.S your family looks wonderful! Dennis

sportsman
Posts: 97
Joined: Feb 2010

I am now over three years post treatment (35 Rads, 7 Chemo) treatments for pharyngeal(spelling)cancer. I am being treated for my swallowing at a large medical center in North Carolina. To date a have had four dilations with a fifth scheduled in June. Still major problems with swallowing. I have had barium swallow tests, modified barium test, checked by two speech therapist, vital stem therapy, you name it I have had it. I had radical neck dissection with 14 lymph nodes removed and have a problem with lymphedema and my neck is hard as a rock and I have the turkey neck sag. My doctor looks at me and basically just shakes her head as boy you are about the worst I've seen, if not the worst close to it. Could there be some other help out there for me? This has been a difficult last three years. I initially lost fifty pounds and have slowly gained about thirty five of them back. Eating is no longer a pleasure but a chore and a necessity to survive. My saliva glands were burned up as well as my thyroid gland. I am to the point where I would go just about anywhere to see if I can get any more help with my problems. I am hard headed and do not like to accept the answer I am getting is that this is all we can do for you. This is a great board and I have read some great advice on here. I would like to know some more about acupuncture and would it possibly help my saliva production. Also anywhere I might go to get another opinion on my swallowing. Thanks for any help I can get.

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

HI Sport,

Sorry to hear of the long struggle. Sometime I wonder about the treatments we are subjected to but we can't reverse that now.

I had my Salivary glands fried as well and have been getting Acupuncture for a couple of months and am getting a little back. Not a lot mind you, but enough that I can wet my teeth and get some moisture when I keep my mouth closed. It seems to be slowly improving though I have a way to go. Most of the points they work on are in your ears. I would guess any Acupuncturist will find you have a lot of imbalance as a result of the treatment you have had. They may help to restore some balance.

On you other issues, I can't really offer much help but to give yourself a boost and a break, you may want to consider taking green smoothies. They are a great way to get a lot of vital nutrients into you with minimal effort. It takes a lot of the 'work' of eating away, and allows you to get bigger quantities of all the great vits into your system. You body will have a much better chance to heal and restore if you give it all the stuff it needs to get all organs working right. There are many sites on green smoothies, and here is one for example >>> http://www.squidoo.com/green-smoothies?utm_campaign=search-discovery&utm_medium=greet4&utm_source=google

PM me if you need any more help along these lines.

Regds
Scambsuter

amy_evan2005
Posts: 42
Joined: Nov 2009

hello everyone,

Evan did finally have his trach removed a few weeks ago because they thought it may help with swallowing to have it removed. But before they did that they got him a smaller trach because when he capped off the other one it was a little difficult to breathe because it was size 8. Once they swithched him out to a size 4 he was able to cap it off and breathe easier.

He is almost nine months out of treatment and still has alot of saliva (thick/foamy). He has been dilated four times since March. Last week they got him open and he was able to drink water,but it closed back up in about three days. So we'll find out this week when they're going to dilate again and where to go from here.

The trach was hard for Evan also. He couldn't sleep with the humidifier on him. He would use it during the day when he was sitting or resting. We also use a cool mist humidifier in the bedroom on his side of the bed.

I would like to tell you that once they got his esophagus open everything was fine,but unfortunately I can't. He still can't eat(feeding tube only) and when one problem is fixed two more are found. He did all the treatments to save his voice box only to possibly have to lose it to eat again. But he is still cancer free and that is awesome.

Thanks all,
Amy & Evan

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