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Sdurnell's Message Board Messages

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RE: Cough after Radiation

by Sdurnell - May 21 at 1:23 AM

William,

It sounds somewhat like "post nasal drip," especially as you say it's fixed by coughing something up.  You might try medications designed to help with this.  Might not be a radiation side effect at all.  I have allergies, especially this time of year, and experience something similar with them.

All the best,

Susan

RE: Cough after Radiation

by Sdurnell - May 16 at 2:33 AM

William,

At 9 years out, I sometimes cough, usually when I get food stuck in my throat.  Does that ever happen to you?  My throat is narrower now because of the radiation. 

It can also happen if you aspirate food.  Have you had a swallow study recently?  Those are the only times I really cough these days.

Congratulations on getting enough saliva to get by.  I have found that mine keeps improving even now.  

Wishing you all the best of luck and health!

Susan

RE: What happened with this site?

by Sdurnell - February 25 at 7:19 AM

CeeDee,

I'm so sorry I didn't get back to you right away.  We have been out of the country, in Peru on a small cruise boat doing birdwatching on the Amazon and its tributaries.  That might tell you a bit about my quality of life nine years out of treatment.  It's very good.  I do have a few eating issues, but not any that have prevented me from regaining a little too much weight.

I would do the treatment again, as brutal as it is.  In a heartbeat.  I am very happy with the eventual outcome.  I do anticipate that I may at some point have more "late radiation effects," such as loss of voice or inability to swallow.  But I lived more than a year with a feeding tube just fine.  I was able to travel across the country and do some substitute teaching with it.

In had surgery to remove the lymph nodes on one side, and the pathology confirmed that only one was cancerous.  My primary was never found, though.  Radiation, but not chemo, was recommended.  I was given a 15% chance of cure without it, 85% with it.  

The fact is that you'd likely not live that long with no treatment.  I read about U. S. Grant, Civil War general and U. S. President, who also had throat cancer.  His was inoperable at the time, and of course they had no chemo or radiation.  He had difficulty eating and drinking as his tumor grew, and only palliative care.  His was a painful death over a couple of years, and he eventually starved to death.

I think that as of the way things stand right now, it's likely that you could get through treatment before the government would restrict movement much here.  I wouldn't worry about that at all.  But then, I don't really worry that much.  I found doctors that I really could trust, and did what they suggested, and here I am today.

All the best to you,

Susan

RE: hope y'all are well

by Sdurnell - January 28 at 4:12 AM

Tig

If things don't pick up here, try going to Inspire head and neck cancer alliance.  More activity there.

Susan

RE: What happened with this site?

by Sdurnell - January 27 at 11:27 PM

Johnsonly1,

I am the Susan PopPop referred to in his post. I also had my throat close up completely, which was a side effect that we didn't anticipate, even though I made sure I was very well informed about treatment and its effects.  We are all different and no one can predict how this barbaric (but often succesful!) treatment will effect any one of us.

I have had around 20 dilations over the last 8 years or so.  But all of mine were balloon type. It took a series of them at first to get me eating again, and afterward usually 2 or 3 a year to keep me eating.  But the last one has been successful for over a year and a half.

The success of these treatment greatly depends on what the damage to the throat is.  I had a very high stricture;  my ENT tried to dilate it but was not successful.  He found me a GI who had a lot of experience with tricky cases, and that doctor was the one who was able to do the job.

I was on the feeding tube, which I needed for all of my hydration, nutrition, and medication, for more than a year.  During that time I had a lot of problems with it, but also learned to make peace with its necessity.  We did some traveling, flying across the country one way and driving back the other, and I realized that I could do pretty much anything I wanted to, tube or no tube.

So I don't fear the possibility that I might once again be dependent on a feeding tube.  My dad had one for his last five years, and was happy with it.

I suggest some counseling for your husband.  Maybe talking to a minister in your faith would help him see the value of all human life, no matter what constraints exist.  I think this could be of value whether or not you find some medical help for his condition.  

The bougies the sometimes use for dilation work on kind of the same principal as balloons do, but might be better suited to his case.  From what I can tell it's just a doctor's preference which type to use.

Please do seek out other opinions;  I would never accept what I'd consider a bad situation on just one person's judgment.  Go to the biggest cancer or ENT or GI center you can find, and get on the list to see someone with a lot of experience.  That was key for me.  And don't hesitate to be an advocate for him, or to encourage him to advocate for himself.

Life is never quite the same for us head and neck cancer patients after treatment, but it is life, and it can be very good.

All the best to you both,

Susan

RE: What happened with this site?

by Sdurnell - December 19 at 1:15 AM

Hi Fiona.

This is a site for head and neck cancer, primarily squamous cell carcinoma.  You might try the bladder cancer section of this site, or you could go to Inspire and try there.

Best of luck to you.

Susan

RE: What happened with this site?

by Sdurnell - December 08 at 9:15 PM

Patty,

I am so sorry about your husband and that no one is willing to help him.  I was diagnosed the monthe before he was, and am doing fine now.  This think is so unpredictable.  

I have a few thoughts.  Gaining weight would really help him probably.  Is he using a formula in his tube?  If so, he might be able to get one that has more calories in it to help with the weight.  Or if he's using a product like Ensure, there are some high-calorie versions of these too.  See if he can meet with a dietitian (make sure s/he is a Registered Dietitian) about it.  His ENT or cancer center can probably refer you to one.

Have any dentists suggested using hyperbaric oxygen treatments and then pullling teeth?  This is a treatment that is used for all kinds of reasons, some very experiemental, but for dental work after radiation it is so proven that insurance companies will pay for it.  See if you can find a cancer dentist (again, try at the cancer center for a referral) or mabye an oral surgeon with experience with head and neck cancer patients.  I was advised to get all my teeth pulled before radiation and am glad I did.

And, while there is no cure for us, there is something better than a cure for this cancer.  It's the HPV vaccine, and it will prevent HPV-related cancers, including cervical and many head and neck cancers.  I am an advocate for this vaccine to be given to young teens everywhere;  it has been proven to be successful for cervical cancer, and there are studies going on now about H&N cancer.

Best of luck to you and your husband.

Susan

RE: Hello?

by Sdurnell - November 05 at 5:02 AM

Hey, that's great that you are more than three years out.  If your tumor(s) was HPV related, then you are most likely cured, since you have passed that magical 2-year mark.

Congratulations, and I hope things continue to go well for you.

Susan

RE: Hello?

by Sdurnell - November 02 at 5:52 AM

The thing is that this group used to be quite active, and there hasn't been anything here for quite a while. 

Susan

Hello?

by Sdurnell - October 28 at 6:10 AM

Just wondering whether the monitors here have noticed that there have been no new posts for a very long time, and realized that this is not typical.

I have tried sending messages to the powers that be here, but it is difficult to find out how to do that.

Help?

Susan

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About Sdurnell

Patient
Head and Neck Cancer, Squamous Cell Cancer, Throat Cancer
Cancer Nutrition, Radiation

I have squamous cell cancer. A neck dissection showed one node positive (<3 cm.) and encapsulated. No primary has been found. I have no risk factors for this condition. Day after tomorrow I go in to have all my teeth pulled (my teeth are OK, but gums not so great). I will need five weeks of radiation, starting as soon as my mouth heals, and have been told not to lose any weight, even though I'm about 15 # overweight. Everyone is hoping I can avoid a feeding tube, but I'm not confident I can eat enough, especially without any teeth. I'd really like advice and support for this.

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