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4 weeks behind us and doing well.

HelenBack
Posts: 62
Joined: Jan 2013

Just a quick report on my husband. Yesterday was the 23rd of 33 treatments so we start the 10 day countdown on Monday. He had two double-rad days, one due to the machine breaking down and one to avoid doing his last day after the three day holiday break for Memorial day. So, it's a tidy schedule with two M-F's to go.

He has a pretty severe mucositis sore that showed up during week two, surprising the doctors that it came so early. It's in a place wher he has a jutting molar and it just has no chance to heal. It was painful at first and we were sure that it was an indication of things to come, but no other sores so far. None! I would like to point out that we heard from our rad onc that it may help to make the mouth tissue cold by holding ice chips or cold water in your mouth before going in for rads. My husband, for every single appointment, has brought a thermal cup filled with ice and water and he swishes with it while he waits in the dressing room.

I know that some are reporting that their teeth are sensitive to cold so it may not be possible for them, and of course, we don't know if it's the reason that his mouth is doing so well, but other than that one sore he is almost completely pain free, on no pain meds. I'm sure it will get worse over these two weeks and beyond but for now we are so grateful!

Also, he has a significant band of hair loss along the whole back of his head from ear to ear. The rad onc was surprised as are we. It's like four inches in height evenly acroos his whole neck and back of head, even though they are aiming more to the left side. Anyone else have this?

My husband's reaction to the second cisplatin dose was not so great. We had all the big guns anti-nausea meds and he still felt sick for a week. Eating has been a challenge. He also had an all-over body rash (not itchy, thankfully) that also surprised the doctors. Eating has been the biggest challenge due to nausea and he has laost 9 pounds so far. If he loses 9 more, they'l do a nasal feeding tube. Hard to know if it'll come to that.

Mucous and saliva so far not too bad. All in all going well, hoping it stays that way, but ready if it doesn't.

I know I don't post much, but I have been reading many of the posts daily. My heart breaks for so many going through the hardest of times. I'm amazed by the courage of every person here, and as I read more, I become more and more invested in how each person is doing at any given time. This is the kindest, bravest group of people I have had the good fortune to meet.

Thank you                          

 

 

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

single digits....another big milestone for me, I was so happy!  Sorry to hear about the one mouth sore that won't go away....I'm sure the jutting molar has much to do with it's persistance.  Don't forget the salt and soda rinse and spit...salt is a great healer of mucous membranes.  I'm amazed his saliva has held up so well this far into treatment....lucky guy! Smile  Also, a 9 lb weight loss this far into treatment is darn good....

I think most of us lost that strip of hair...mine was about two inches wide and bare as a baby's butt....but it has filled in nicely over the last several months. 

Constant nausea is horrible....I hated those times when I felt like that all day long.  He can take his anti-nausea meds anytime he's got that going on...they aren't just for the week or so after chemo.  I used to take them first pop in the morning before the nausea set in.  If I couldn't keep anything down, I'd take a Zophran or a Compazine 45 minutes before I tried to get an Ensure down....usually they'd stay if I laid down right away.

Single digits are just around the corner....hang in there!!

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Kcre30's picture
Kcre30
Posts: 7
Joined: Mar 2013

Glad to hear that your husband is hanging in there. My husband finished his tx 18 days ago. He lost that very same patch of hair, isn't that odd? We kept expecting the rest of it to follow, but he's kept the rest....other than the odd pattern of facial hair growth. He says he doesn't mind that because he hates to shave :-0

Around the last week or so was when he started having awful radiation burns, but they almost instantly healed when rads were complete. Keep slathering on whatever you're using!! Our doc suggested Aquaphor, so I felt like I was helping by tending to his skin care.

I hope you're getting support from family, friends, coworkers, etc.. Things don't instantly get better when treatment ends, as I'm sure you've read on this board, (and what would we do without it?) but it's such a relief to get to the finish line so the healing can begin!  

Here's to smooth sailing 

 

Kelly

 

Heidi Banks's picture
Heidi Banks
Posts: 2
Joined: May 2013

Helen

Your post has given me hope.  I am so glad your husband is doing so well.  

You and your family will be in my prayers. 

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Helen,

On to the countdown, maybe they could triple up (you said double) the treatments and finish even sooner.  Nah, then everyone would want to and that would screw them all up.

I too had the no-hair ring from the chin line around my head and down, it has partially come back, but not much.

I had the nose tube (twice) and two PEGs and I liked the PEG way better.  Screw the nose tube (excuse me, it was a b _ _ ch to get in), but that was me.

You got to love this adventure, I am glad he is doing so well.  If he does get neck burn, get the Silver Sulfadiazine Cream, you won’t regret it.

Peaceful rads,

Matt

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

...if there is even a hint of getting to choose between the nose tube or the PEG, jump on getting the PEG.....who knows how long he might have to use tube feedings....I can't imagine having a tube hanging down my face for weeks and months....having one hanging out your belly is unhandy enough, but most of the unhandiness is where to stash it when not in use....Laughing....having a tube dangling from nose would have drove me totally insane.

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letumwork's picture
letumwork
Posts: 18
Joined: Mar 2013

Hi Helen- Sounds like your husband is making good progress. I finished my radiation treatments on friday. I'm now waiting for my bonus round of Chemotherapy to start at the end of the month. I will be going in to the infusion lab on weeekdays for hydrotherapy IV'S just to make sure I'm getting enough fluids. The burns on the outside of my neck are pretty bad. They flared up right when the radiation treatments were ending and I'm using the Silver Sulfadiazine to sooth them. I have some grade 3 Mucositis mostly where my molars touch the inside of my cheeks and my Uvula which makes swallowing fun! I also have minor hearing loss and moderate Tinitus in both ears from the Cisplatin. I've lost around 13 pounds so far but this week I will lose more as I had the Cisplatin on Wednesday and the Nausea and lack of appetite usually last a week. Right now the biggest challenge is drinking enough fluids and liquid meals. I have to force myself to do it! I'd rather lie in bed and rest. Well, good luck with the rest of your husbands treatments and I hope it continues to go smoothly!

 

John

HelenBack
Posts: 62
Joined: Jan 2013

You made it! Except for that pesky bonus chemo. I'm amazed you lost so little weight, I forget if you have a PEG or not. My husband wonders if he'll be forced to get the third bag, he really had a hard time with the chemo, but I'm pretty sure the docs thinks he fared well. It's all a matter of perspective.

I'm curious about the bonus chemo. It seems so many people have different chemo schedules and doses. Is it just a matter of different hospitals, or just that you had a different cancer? I mean, c'mon isn't 3 big bags enough? Sheesh.

We were warned that my husband's neck would be "torn up" and am not looking forward to it. We have these gel pad things that cost a million dollars--I hope they work. 

Before we started treatment I asked the doc to put an order in for fluids M,W,F and it has helped. But hearing that you are doing daily, I'm wondering if we should do the same. Did you have fluids the whole way?

Sounds like you're doing great!

Helen

 

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