First week of treatment

10 Posts | Page(s): 1 

First week of treatment

by subefius64 on Sun Sep 24, 2017 03:04 PM

Quote | Reply
My husband started treatment this week for IVa throat cancer. He had the feeding tube inserted Monday because he had already lost 35 lbs (from 190 to 155) and Rad doctor didn't want to wait. Treatments will be radiation twice a day for 7 weeks and Chemo weekly. Day one went great, day two, husband was feeling a little weak, but by day 3, he could hardly put one foot in front of the other. We were not expecting symptoms so soon. The mucus is so thick and horrible, he can hardly get water to go down. Musinex sets his throats on fire. Before treatment start, Magic Mouthwash was his best friend. Now it won't go down. The dietician told us that we could not use the PEG until they (because of insurance) said we could. Jim, my husband, has not been able to get or keep anything down since Thursday, 4 days ago. He can't keep going like this and we have 6 more weeks to go. Any help or suggestions will be greatly appreciated as we begin this scary journey. Thanks so much. Reading the post here have been very informative. It is going to find others who have been through and going through what we are. Susan

RE: First week of treatment

by Whitewhale on Mon Sep 25, 2017 11:57 PM

Quote | Reply
So sorry your husband is having a tough start. I really did not have problems till half way. But everyone is different. Guess the peg tube is this best thing as it will keep him stringer all the best to you guys will keep you all in my thoughts Bob

RE: First week of treatment

by Sdurnell on Tue Sep 26, 2017 03:18 AM

Quote | Reply

Susan,

It sounds like he is experiencing some of the side effects of radiation very early.  I'm wondering why he lost so much  weight and needed Magic Mouthwash before--did he have surgery first?

Magic Mouthwash should help with pain even if he can't swallow it.  He can also use a mix of salt and baking soda in water.  It can help with pain and also cut the mucus somewhat.

I would contact his doctors and the dietitian right away and present them with the problems he is having.  He should be able to use the tube now to prevent more weight loss and promote healing.  He needs lots of calories and protein, more than usual, to promote the healing process.

Best of luck to you both.

Ssuan

RE: First week of treatment

by subefius64 on Wed Sep 27, 2017 01:40 AM

Quote | Reply
No, he did not have surgery, but the way we found his was severe throat pain and weight loss. Being the typical man, he ignored the symptoms, hoping they would go away. His tumor had horseshoe'ed around his throat. One side had an ulcerated place that was very painful and would bleed. He was having a hard time eating due to the pain. By the time I convinced him to go to doctor, he had lost 20+ lbs. To begin with they thought he had an ulcerated esophagus. The gave him the magic mouthwash on our first doctor visit. He started his second week of treatment today and he is down another 10 lbs. in one week 45 total from 190 to 145. He has the the PEG, but insurance does not want to pay for food until he can no longer eat by mouth. He needs to continue swalllowing through entire treatment to not lose that muscle. After the rough week we had, we decided screw insurance and started Ensure in the feeding tube. The swelling, mucus and nasuea has been brutal this first week. I'm not sure how we will manage as it gets worse. I'm praying that since the first week was worse than expected, our last weeks will be better than expected. I know....Wishful thinking. Any helpful hints would be greatly appreciated. Susan

RE: First week of treatment

by subefius64 on Wed Sep 27, 2017 11:44 AM

Quote | Reply
No, he did not have surgery, but the way we found his was severe throat pain and weight loss. Being the typical man, he ignored the symptoms, hoping they would go away. His tumor had horseshoe'ed around his throat. One side had an ulcerated place that was very painful and would bleed. He was having a hard time eating due to the pain. By the time I convinced him to go to doctor, he had lost 20+ lbs. To begin with they thought he had an ulcerated esophagus. The gave him the magic mouthwash on our first doctor visit. He started his second week of treatment today and he is down another 10 lbs. in one week 45 total from 190 to 145. He has the the PEG, but insurance does not want to pay for food until he can no longer eat by mouth. He needs to continue swalllowing through entire treatment to not lose that muscle. After the rough week we had, we decided screw insurance and started Ensure in the feeding tube. The swelling, mucus and nasuea has been brutal this first week. I'm not sure how we will manage as it gets worse. I'm praying that since the first week was worse than expected, our last weeks will be better than expected. I know....Wishful thinking. Any helpful hints would be greatly appreciated. Susan

RE: First week of treatment

by soonermom on Thu Sep 28, 2017 10:00 AM

Quote | Reply

You may want to consider ordering VHC Boost for the PEG (you can drink it later if he prefers) from Amazon.  540 calories in 8 oz.  It kept my husband alive during treatment and during recovery.  It is about $40.00 for 27, 8 oz. boxes if you are a prime member. It does not require a prescription.  If the doctor ordered the exact same food, it was $90.00. Crazy.  We just paid for it ourselves.  The dietitician at the Cancer Center calculated exactly how many  boxes he had to have every day.

RE: First week of treatment

by JohnnyO on Thu Sep 28, 2017 02:37 PM

Quote | Reply

I'm so glad you decided to start using the tube with the Ensure.  I tried to comment for you to do that after you first posted, but the website had some sort of technical issue that wouldn't allow posting.

Nothing is as important as energy for getting through this treatment.  While I didn't have a feeding tube, I forced myself to eat far beyond the point of feeling satiated.  Use the feeding tube, and supplement with eating to maintain the swallowing muscles, even if he can't get much down.

THose who had PEG tubes here know more than I do, but I would say to keep loading him up with more calories than he needs so he can even gain weight.  (I managed to gain a pound during my treatment).  Good luck, and check back with us.  

RE: First week of treatment

by cagy2 on Thu Sep 28, 2017 03:13 PM

Quote | Reply

On Sep 28, 2017 2:37 PM JohnnyO wrote:

I'm so glad you decided to start using the tube with the Ensure.  I tried to comment for you to do that after you first posted, but the website had some sort of technical issue that wouldn't allow posting.

Nothing is as important as energy for getting through this treatment.  While I didn't have a feeding tube, I forced myself to eat far beyond the point of feeling satiated.  Use the feeding tube, and supplement with eating to maintain the swallowing muscles, even if he can't get much down.

THose who had PEG tubes here know more than I do, but I would say to keep loading him up with more calories than he needs so he can even gain weight.  (I managed to gain a pound during my treatment).  Good luck, and check back with us.  

I went thru throat cancer twice, 2010 and 2016.  I was on Ensure the first time and Isosource the second.  I found Isosource better for some reason but the last refill I requested Ensure Plus because one can drink that out of the can.  Tastes like a milkshake and I'm still drinking it 5 months later using a can ot two when I feel I haven't eaten enough. I lost my appetite and things will never be the same.  The very first thing I had done was a PEG tube before any treatment.  I've seen people try to suffer without one and can not see how they can do that.  I went thru 8 cans a day.  Used an IV bag into my feeding tube and found that takes too long so the last time I just poured it into my stringe.  Quicker.  

RE: First week of treatment

by Sdurnell on Fri Sep 29, 2017 01:54 AM

Quote | Reply

On Sep 27, 2017 1:40 AM subefius64 wrote:

No, he did not have surgery, but the way we found his was severe throat pain and weight loss. Being the typical man, he ignored the symptoms, hoping they would go away. His tumor had horseshoe'ed around his throat. One side had an ulcerated place that was very painful and would bleed. He was having a hard time eating due to the pain. By the time I convinced him to go to doctor, he had lost 20+ lbs. To begin with they thought he had an ulcerated esophagus. The gave him the magic mouthwash on our first doctor visit. He started his second week of treatment today and he is down another 10 lbs. in one week 45 total from 190 to 145. He has the the PEG, but insurance does not want to pay for food until he can no longer eat by mouth. He needs to continue swalllowing through entire treatment to not lose that muscle. After the rough week we had, we decided screw insurance and started Ensure in the feeding tube. The swelling, mucus and nasuea has been brutal this first week. I'm not sure how we will manage as it gets worse. I'm praying that since the first week was worse than expected, our last weeks will be better than expected. I know....Wishful thinking. Any helpful hints would be greatly appreciated. Susan

I would definitely buy my own supplements myself and begin using the tube right away.  You can use over-the-counter things like Boost or Ensure or Carnation Instant Breakfast, and there are higher-calorie forms available online.  This can be a stop gap measure until the insurance kicks in.  He can use it either to supplement his oral eating or in place of most of it.  His dietitian should be OK with this.

I don't think your insurance company is considering his prior weight loss, so you might want to contact them too and explain how critical his situation. 

It is important to try to keep swallowing during and after treatment while he is using the tube if at all possible.  (But for me it wasn't possible, and I went many months after treatment without swallowing a thing.  When I finally got my throat open my swallowing muscles were just fine, so it's not always a problem.)

All the best,

Susan

RE: First week of treatment

by cagy2 on Fri Sep 29, 2017 02:08 AM

Quote | Reply

You can contact the makers of Isosorce and Ensure and they will supply you nutrition free or at a greatly reduced cost.  I have Humana and mine was free.  I used Isosource the last time but when you get to your last order after treatment (you can judge that) switch to Ensure Plus.  Taste like a shake.

My throat closed up completely during treatment and I have had 13 dilations so far.  My sister in law was buying her  nutrition because her insurance wouldn't pay.  I told her to check this out and she has been getting supplements for 2 years now for peanuts.

10 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.