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What happened with this site?

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RE: What happened with this site?

by Sdurnell on Mon Jan 27, 2020 11:27 PM

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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 CeeDee on Mon Jan 27, 2020 11:40 PM

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Dear Susan,

Wow. I just now read this post, so sorry about the one i just sent to you...This site is confusing, or it is just me.

If a person knew they would live 4-5 years with the cancer, and be able to eat, drink and have no tubes, then pass away, would it be better? Better in terms of the other option of living a little longer because of "treatment," but living with a low-quality of life?

Did you feel this way--like i do pre-radiation treatment (starts in 2 days)--i mean, going back and forth with treatment indecision? I have been driving everyone crazy, because it is such a hard decision for me to make.

Are you really glad that you went through with it? No offense please...i am very head-spinningly, undecided! If i was in my 30s or 40s, there would be less indecision as so much life ahead. 

Also, to change subject, our daughter asked what would happen if a nation-wide quarantine took place while a person is in treatment? If the treatment had to stop, would that make the cancer go wild?

Thank you! God Bless You.

RE: What happened with this site?

by Sdurnell on Tue Feb 25, 2020 07:19 AM

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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: What happened with this site?

by Slowlane on Sun May 17, 2020 03:40 PM

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Susan...PopPop....So good to see you still here.  I will be 10 years out in August 2020 from radical neck disection 35 rounds of radiation, 3 monster chemos.  and 5 years ago I had 5 SBRT rounds for a small lung squamous spot.

I'm doing fine except for shortness of breath during exersion.

It took me about 3 years to get my saliva back.  Never knew how much I liked spit.

I also still have the drooped shoulder, scars and limited range of motion.  Lets see...Neurapathy in my toes from Agent Orange or the Cisplatinum or both.

They made me have all my lower teeth pulled and it was hell but glad I did it.

My biggiest hit was 26 months ago when I lost my most wonderful Wife of 50 years to Pneumonia/heart attack.

I am sorry for being away for so long and miss you guys.

You were always there for me and I desperately needed your help and comfort.

Still miss ODave.

God Bless You All..........Slowlane

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