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Has anyone else had these problems?

handl1983
Posts: 37
Joined: Mar 2010

Hello everyone!
I am new to this sight. I thought I had posted something last night, but cant find it on here anywhere. If I am repeating myself, I apologize. My husband was diagnosed with SCC stage IV in April of '09. Needless to say, this year has been hell. I was reading alot of your posts and no one seems to have gone through the same treatments that my husband has. He was first given induction chemo (which almost killed him) then he had surgery to remove the tonsil and lymph nodes,(which ruined his soft palate) and then he had to have his teeth pulled (which held up the radiation treatment for 6 weeks,) then he had radiation at 25 minutes per day for 7 weeks. Now the cancer has moved into his lung. On March 5th, he had surgery to remove 1/4 of his lung. He is still down 30 lbs because he cant swallow very well, and although we laugh, anything he drinks comes out of his nose. It is pretty embarassing for him. His next CAT & PET scans are scheduled for May 5th and we are praying that it hasnt gone anywhere else. I am so sorry to see all of you on this sight because it means you are all dealing with this horrible disease also!
I am making him shakes that have 1500 calories in them, and I am trying my best to get him to drink 2 of them daily. If anyone has any advice or tips for us, it would be much appreciated. Thanks for reading our post.
Lori

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Can truly appreciate your comment on the induction chemo- gets tough. No removal surgery for me- C&R was used to destroy the two tumors on the left-side of my neck, and seems to have done a good job. Sounds like your hubby also had full head and neck rads.

I'm just shy of a year since my last rad, and the damage to my teeth has become very evident. Figure the pulling of my teeth is inevitable. In retrospect- kinda wish they had done this before the C&R. Drs. had to know what my C&R regime would do to my teeth.

My C was Nasopharyngeal, and my tonsils were not touched. If the C has spread to his lung- are you sure his C wasn't lung C that had spread to his tonsils? My Sister's C first showed with brain lessions that produced headaches and then a vision problem. Then the realized her Primary was a 4" mass in her left lung. Way it works- her lung C had spread to her brain, and also abdominal areas. Her death last October was...

I hope and pray your husband's C has now been dealt with, and you have many more years to share with him. Has he considered getting a PEG feeding tube. I've had mine since Jan 09, and am hoping to finally lose it next month. They seem worse than they are- just a minor nuissance. And, they do an excellent job with providing nutrition, by bypassing the mouth and esophagus with a direct line/tube into the stomach. You and he may want to consider this option.

Welcome to the forum, Lori.

kcass

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Dear Kent,
In what way is the tooth damage showing up?
When did you start noticing it and is it getting worse?
Thanks
Stacey

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Noticed the tops of my lower-front teeth, first, and that was a number of months ago. But over the last month, or so, I've lost the top enamel/white on my lower-left carnivour tooth, next to the front teeth, as well as the other ripping tooth above it. I can literally see the insides of my teeth, because the enamel cover tops are gone. Seems to me my teeth might be at risk for infections, etc. There is a "Dental Problems" thread, Stacey, and there's more there. Plan on going to my Dentist ASAP.

Did have a root canal, post-treatment. Problem didn't show in pre-treatment exam. And, it looks to me that I'm seeing a lot more of my fillings over the last couple months- losing tooth matter on a number of my teeth. Landranger just had to have his pulled, three years post-treatment. Lori's husband had his pulled early. Seems a common thing- like maybe our Drs. shoulda known this would happen, so maybe they shoulda been pulled before treatment. Maybe not. Just one of those things, Stacey. We are still alive, girl.

kcass

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Kent, you have me confused with another poster. I am only 5 months post and my teeth are doing fairly well. I have had not had to have any pulled but did break the corner off of a molar back in January as well as suffering 2 small cavities. (after having gone decades with nothing needed but the cleaning and checking) I use Sensodyne Pro-Namel toothpaste on the advice of my dentist as well as Biotene mouthwash for my dry mouth. Mouth/teeth care was stressed as very important by radiation Doctor as well as Cancer center nurses. I have not missed a checkup due to my treatment and have tried to follow advice that was given. I am so sorry for those of you having problems. I have read the posts of those having problems and of needing teeth pulled prior to treatment and wondered why I was fortunate enough to avoid this. Only time will tell what effects this will have on my teeth. I will hope for the best. Good luck to all.

Mike

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sorry, Mike. Had a post you made in mind. It's Sportsman. Very very sorry, Mike. And I am very glad to hear your teeth are doing okay. Biotene with me, also. Jim and I use Prevident- Periodontist started me on it. Seems I'm learning the hard way about the teeth complication. Again- sorry. Sensodyne Pro-Namel, huh? Will check it out. Thank you.

kcass

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Mike, I also saw my dentist before radiation and was told that my teeth should survive treatment. I think the reason so many others have had to get theirs pulled is they may have had problems with their teeth prior to treatment (old fillings, cavities, periodontal disease,etc)

I'm six month post treatment now and so far no problems, I hope that continues as I have read from others here that having dental work done can cause problems.

I use Biotene toothpaste but I use the baking soda, water and salt as a mouth rinse as I find the Biotene mouthwash still burns my mouth and tongue.

Continued good health to you and everyone else on this site.

Stay strong and keep smiling,
Glenna

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

As soon as my oncologist gives me the OK..I'm going to the dentist-Thanks for sharing!!!

handl1983
Posts: 37
Joined: Mar 2010

Hi Kcass!!

Thanks for responding so quickly. My huspand's primary C was head and neck- the spot they found in his lung was SCC, so they figured it travelled from the neck surgery. As the Dr. explained it to us- one million cancer cells can fit on a sesame seed! That is scary!!!

The center where he receives his treatments is very well known in our area and they have wonderful doctors...But...they just dont seem to be on the same page with his treatment. The surgeon thinks surgery is best, the chemo Dr. thinks chemo is best, the rad. Dr.....
you get what I mean. It gets very frustrating! The whole thing with pulling his teeth should have been done before ANY treatment was begun, and we cannot figure out why it wasnt. I am not a DR. so what do I know??

As far as his eating is concerned- the damage to the soft palate is the problem. They discussed getting an "opterator" (an extension on his upper denture) but they nixed it because it would put it too close to his gag reflex and he would be choking all of the time. Surgery to repair it may be an option, but right now, he is too weak. He has the month of April to recover- so I am getting creative with what I put in his shakes! Haha!
I will try almost anything at this point.

I am so sorry about your sister! I lost my mom last December to kidney failure. The only hapiness her loss brings me is that I know she is in Heaven now and free of pain. Heaven has to be a MUCH better place than here, so I just think of it that way.

Again- thanks for the response, this is such a great pick me up to be able to share our story and hear what others do in the same or similiar situations. My prayers will be with you that you continue to heal and be C-Free!!!! Lori

friend of Bill
Posts: 87
Joined: Mar 2010

Blessings and strength to you both, Lori. You're right - it's hell for big patches of time but great you can laugh. My lips, gums, mouth, tounge, and throat were so demolished by chemo and radiation and surgery, I could have not survived without a feeding tube. My only regret is that I did not do it earlier. Think about talking to your oncologist(s)about advisability of tube. He can still do your shakes if he wants (and docs approve)! Will pray for good outcome and clean May scans. Take good care of yourself. In many ways, my wife's journey was as difficult as mine; in some ways, more arduous, like not sleeping securely for months.
Vince

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I agree Vince. The caregivers are sort of the protectors, always trying to be ready for anything that decides its going to do anything else wrong to their loved one's body. Standing guard if you will. Asking more questions than the patient sometimes, always having the back of their loved one. They stay awake so the other can sleep. They make the foods, or dole out the meds so they know exactly what is being given, how much, and what time, etc. They are the guards against anything additionally evil wanting to disrupt things.
The caregivers arent just fighting the cancer and its effects for the patient, they fight how it effects them, the rest of the family, the workplace, the finances, they fight all of the other things so the patient, their loved one, only has to concentrate on themself.

the caregiver is a godsend......

handl1983
Posts: 37
Joined: Mar 2010

Wow! You nailed it!! Sometimes, I get so tired.... but I thank God every day that He has kept me healthy so far! I cannot imagine someone having to go through this alone! My husband apologizes to me for having to go through this! Are you kidding?? I would give my life if he could just be okay!! I am sure many of you feel this way, but he tells me that even if we could trade places, he never would. So, to all of you who are in our boat, I wish you broad shoulders and brave hearts!!! Keep fighting, and give lots of hugs!!
Lori

handl1983
Posts: 37
Joined: Mar 2010

Hi Friend of Bill!
We had thought at the beginning of radiation, that he would get a peg tube, but the Rad. doctors feared that he might get an infection because he was also taking chemo at the same time. So, he didnt get one.... Sometimes I think this particular hospital is just too darn busy and people tend to fall through the cracks. He has never had an appointment with a nutritionist. I know someone in the field,so I have asked her for help and guidance. He had an appointment with the dental clinic today and they said he still has rad. burns in his throat. I do not know how long they last??? His last treatment was on Dec. 2nd.
We just keep going day by day and thank God for each new morning!!
I know what you mean about being a care giver! I cant tell you how many times each night I reach over to make sure he is still breathing! He is a fighter, as are all of you, and I thank you for sharing your time with us!!
Lori

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

There are some similarities between your husband's care and my own, Lori. In October of 2005 I underwent a 15-hour surgery to replace half of my tongue along with a radical neck dissection. Following four days of induced coma and two weeks of healing in the hospital I was given chemotherapy (cisplatin) and radiation therapy -- daily for seven weeks, approximately 30 - 45 minutes per session. I then had an RLL (right lower lung) lobectomy in January of 2008 after SCC was also found there. Since it was still very small (4mm at the time of initial discovery) they were not able to ascertain whether it was new growth or metastasis but we are all hopeful that it was new growth.

So: your husband and I have shared a few things. And I am now, two years following the lobectomy, NED (No Evidence of Disease). The nature of my head/neck cancer treatment, the surgery coupled with the rads in particular, has necessitated recent visits to the hospital for dilations of the esophagus, with hope that we can make eating orally an easier proposition.

With that expectation, I did not rush to the ER to get my PEG tube replaced (an alternate way of eating that ensures (pardon the pun) that you get good nutrition). However, six weeks later, I am reconsidering that ... we will see.

I would think that 3,000 calories daily would be adequate for most folks. However, assuming you were offered the services of a nutritionist at the time of your husband's treatments, I would be sure to get with that person to make sure that hub is getting the RIGHT calories.

I would encourage you to continue in your pursuit of variety in hub's shakes, too. When food becomes boring, an important part of life tends to do the same, after all.

In any event, if hub is losing weight and having trouble getting the shakes down, please do not hesitate to ask about having a PEG tube inserted. They can be lifesavers and they definitely make life easier for both survivor and caregiver while the survivor re-learns the eating gig.

Best wishes to your husband and you, Lori.

Take care,

Joe

oldejack's picture
oldejack
Posts: 28
Joined: Sep 2005

howdy ya'll!!

yeppers listen to joe he's been thru it.
i'm almost 8 years post myself(i feel kinda like an 8 year old boy saying "7 and 3/4 years"), had 5 cisplatin plus 35 rads spread over 7 weeks. no feeding tube but then i lost 70 lbs during tx and only about 10-15 of that was flab. i recommend going for way more than 1500 calories a day, you burn more than that just making new blood cells. and i personally prefer chocolate/peanut butter/banana shakes. throw in a good scoop of powdered protein and he can sip to his hearts content.
sounds strange but for my dad it was a "steak shake" that worked, pureed and thinned with beef stock and a little gravy for texture. to each his own.
on the subject of teeth, yep they slowly rot away, i've lost a lot of strength in the enamel as well as losing one tooth and some jawbone over the years.
chlorhexidine mouthwash helps some, i just wish it came in another flavor than mint!!!

remember playing good old-fashioned pinball?
no matter how well you play eventually you run out of balls to play. the game is over and yet. ..
kathunk!!
its a free play, you "matched"!!
w00h00 another round!!!!

oldejack

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

OldeJack,
did you experience the discoloring of your teeth with it as well as your tongue?

thegirlfriend

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

Run out of balls? That's a different cancer, isn't it?

In any event, great to 'see' you after all of this time! Don't be such a stranger.

As for the enamel, some of the OTC toothpaste makers are coming out with 'enamel building' varieties. I know because I just bought one. I don't know how they work and would suppose that no one will have an honest answer for a number of years: as you point out, Jack, it can take quite some time for the debilitating effects of rads to show their insidious results in the teeth.

Take care, my ancient friend,

Joe

handl1983
Posts: 37
Joined: Mar 2010

Hey oldejack!
You certainly have "been around the block!" Herb is now trying to throw back pancakes with lots of butter and syrup! It takes awhile, but he does it! I do use powdered protein, peanut butter and bananas. I have never heard of a steak shake though-thats great!!! We dont eat red meat, but maybe a chicken shake?????
I am glad to hear you are doing well! It give all of us hope......
Lori

handl1983
Posts: 37
Joined: Mar 2010

Hey oldejack!
You certainly have "been around the block!" Herb is now trying to throw back pancakes with lots of butter and syrup! It takes awhile, but he does it! I do use powdered protein, peanut butter and bananas. I have never heard of a steak shake though-thats great!!! We dont eat red meat, but maybe a chicken shake?????
I am glad to hear you are doing well! It give all of us hope......
Lori

handl1983
Posts: 37
Joined: Mar 2010

Hi Joe!
Thanks for the response and the advice! You certainly have been to hell and back! I guess if people have to have this terrible disease, we should be thankful that there are treatments to fight it, although no one walks away without battle scars!! Congrats to you that you are clear!!!
We have a juicer that we use, but some of the fruits and veggies sting his throat. I have tried to put yogurt in with it and it seems to soothe it a little bit. You can get very creative when you are trying to keep someone alive! LOL
My husband can be very stubborn (which can be a good thing sometimes) but he insists he doesnt want a peg tube, but we'll see! :)
Thank you for taking your time to respond- it is much appreciated on our part!!
Take care, and feel free to write any time! Lori

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Oldejack- this is your first post I've noticed, and hope you'll be active with us. Got a couple big smiles with what you wrote. Good to have you on board. Free play, huh? Yeah, I can see that. Mine has lasted awhile, and it has been a good play.

Joe- for some reason I didn't realize what your history is. You got no idea how impressed I am, Joe, with the medical history of my post-accident youth. I truly do tip my hat to you. You are one who would be worthy of my silence- the silence of ultimate respect. A co-worker's stepdad went thru such as you did. He had only been treated in the Quad Cities with only radiation; and, when it came back, the U of Iowa put him thru a 15-hour Op, that included a degree of deformation. They said he shoulda also gotten Chemo with his initial bout. I knew of this before I was diagnosed with NPC, and it all was in play with me and my plans, which recognized the darkest of clouds. The stepdad has recovered well, though his ability to speak and eat has been greatly compromised. He is doing well, though. He did have a complication after the long Op- his jugular ruptured! The top Drs. at the U of Iowa were put to work around midnight one night to correct that matter for him: being treated in Iowa City is all right. For what you have survived, Joe, I do realize how easy I have had it, and I tip my hat to you.

Handl1983- I am the PEG advocate. Got all my nutrition thru my PEG for some 7+-weeks just about a year ago, and still have it sticking out of my stomach. It is only a nuissance- NOT THAT BIG OF A DEAL! And for how it can help one with the CRITICAL matter of NUTRITION- please tell your husband it can be a very good thing: can be a blessing, Handl, but nutrition is the fundamental ammo the body needs to fight the best fight possible. Was a blessing for me, and a number of others. It elimates the condition of the mouth and throat as factors in the ability to take-in nutrition, by providing a direct port into the stomach. Had mine since Jan 09. Please make him aware of the positives. Only a minor outpatient Op. Not a big deal to the negative.

Again, Joe- you and Hondo are the greatest of Survivor inspirtations= fact.

kcass

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

You have not had it easy, Kent, and my intent was not to display my wares, so to speak, but to let the lady know that others have been through something similar and are still here to talk about it.

I think Lori should know that her hub is going through an awesome transformation, that it may depress him, that it will certainly frustrate him, that he will be angry, that he will be blue, that he will be sullen on occasion, and that is all before we consider his problems eating. Which will also make him frustrated, angry, sullen, and blue, given the opportunity to do so.

That eating problem can be mighty.

Thanks for the kind words, Kent. You could have worse inspirations than Jack.

Take care,

Joe

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

(Beatles reference)

Stubborn is good. It probably makes us survivors rather than statistics, at least in part.

Stupid is not good. It probably kills us before our time, at least in part.

I can understand and admire your hub's insistence on refusing the tube, as much as anyone. But there are a couple of tenets that I abide by now, one being that pain management is fundamental: a survivor trying to survive in pain is more likely to cave, after all; the other being (now :)) that a well-fed survivor is a happy survivor.

To me, seriously, it is all about maintaining an environment conducive to WANTING to live. Some of us don't need to eat to have that will, I know. But I suggest, still, that the environment should be cultivated, whether it is about pain or nutrition or some other factor that we can manage (I am trying to convince my wife that sex is the only thing that will save me, but she is not listening at the moment, probably because I've been arguing that since long before cancer).

The point lost in there is that if a PEG tube helps, then a PEG tube should be seriously considered. Like drugs provided to help with pain management, the tube can be there and unused if not needed, but there if needed, there if helpful in WANTING to keep on going.

Again, best wishes to hub and his loved ones. He is lucky enough to have someone like you, out seeking answers. Maybe that will be enough.

Take care,

Joe

handl1983
Posts: 37
Joined: Mar 2010

Hey Joe!
Stubborn is as stubborn does...LOL Herb (my husband) thus the handl in our user name...went to the Dr. yesterday. They are speaking of stretching his esophagus ( dont know the correct term for that) and when they do that, they may graft his soft palate. Looks like he will end up with a peg tube anyway!! Thanks for all your info! I am off to work, so I will close for now.

Thanks everyone, for your help and advice! Have a great day!!!!!
Lori

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