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My Sweetheart has cancer

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Hello everyone!

I imagine you will be my best friends throughout the next few months.  My husband was recently diagnosed with tonsil and lymphnode cancer.  We go to Stanford Hospital on Monday to find out the plan for his treatment.  We've been told by the referring doctor that he will have surgery and radiaton but we are not sure in what order.  I'm so scared for him and have searched the boards for answers.  This forum has been the best and appears to be honest with answers.  I need to know everything possible I can do to help him.  We have grown children but it will pretty much be me taking care of him.  Any questions we should take with us on Monday? We have some but since we are so new to this I'm sure you could give us a better idea of what to ask.  Thank you, thank you.... and God Bless you all.  You will be my examples to him when he gets frustrated and beaten down.  I love how positive and strong you all are.  I had this posted in the wrong place and already one of you has helped to get me on the right path.  Thank you again.

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

wonderful group.  You will find so much support here as you and hubby travel this road.  At this juncture, my advice is 1)  don't start searching the internet to find answers about the disease, you'll bump into wrong information, old information, and depressing information.  2)  read the Super Thread (it's always at the top of our forum)....it is packed full of everything you'd ever need to know.  As your man goes thru treatment, you will have many questions, and we will be here to help make that journey easier.

We'll love having you as a best friend Smile.

p

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Thank you so much for responding.  I have taken your advice and will not search another site.  I truly believe I've found the best one here will all of you.

Christine

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family. I'm sorry you have the need to join us but I can assure you, you've come to the right place. I know how scary it is fom the patients point of view and we have many many caregivers here too that will be able to give you some pointers from that aspect.
So I assume it was the ENT that diagnosed your hubby. So the next step is Standford to meet the oncologist right? I would guess you are going to meet the radiation oncologist and if he thinks chemo is needed also, he will send you to the medical oncologist.
Usually most patients have surgery before rads but each case is different. We also have many tonsil cancer patients here and they can be really helpful to you. Mine was laryngeal cancer so my vocal cords was the target spot. That being said, my surgery was mild because I wanted to preserve my voice if possible. If they had taken anymore I would have needed a total laryngectomy. I had Erbitux for my chemo portion of treatment and 35 daily radiation treatments. I just had my 9 month scans and am awaiting the results but my 3 month scans were clear. This treatment while hard but doable, really works. Treatment for head and neck cancer patients has come so far and is so much more effective than ever!
I recommend that you try and get most of your information from your doctors and on here and NOT from doing web searches. The searches will only scare, confuse and frustrate you. Much of the info out there is outdated and simply wrong, anybody can create a web page and make it look like they know what they are talking about.
I know your husband is going to get thru this. Just stay close to us and ask us anything you might want to ask, no question is off limits.
As far as what to ask your dr....it seems you have a pretty good idea on that:
Surgery and what kind.
Radiation and how much/long
Chemo
PEG aka feeding tube...most people end up needing one as the throat gets pretty darn sore during treatment and makes it hard to eat by mouth. Some patients however amazingly got by without needing a PEG....my heroes :-)
Staging...that will also help determine the need for chemo in most cases
Cause...HPV is a very popular culprit although there are other causes as well.

Those are some things to start with. I suggest that when you go to meet the oncologist you speak up if you have questions or simply don't understand what he's saying. You will be spending a lot of time there and it needs to be a good repor. Most of the oncologists are amazing with educating patients and bedside manner but if something isn't feeling right, speak up.

I think I've probably said more than you wanted to know, I just hope I haven't confused you. As I said earlier, this is a great place and you will be hearing from lots of us.

I'm just down the road from you a bit, well quite a ways down but at least we are in the same state haha. I'm in the Los Angeles area :-)

Take good care,
Billie

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I too was STGIII SCC Tonsils and a lymphnode HPV+...

Tonsils came out first, three cycles (nine weeks) of Cisplatin, Taxotere and 5FU, that followed up with seven weeks of concurrent weekly Carboplatin, and the 35 daily rads.

As for Monday, other than take a note pad to write down questions, not much to add until you get the plan of attack...

One thing the gave me was a chemo 101 class... Gave me information sheets on each type of chemo, possible side effects, etc... More info than you want to know at the moment, LOL.

You'll find tons of support here, awesome people...

If you have some time and want to look for information at times, the first thread on this forum, SuperThread has tons of great info and links..

BTW, while all of this is veryscary, it's also very survivorable, rough but doable...

I was Dx in January 2009, finished Tx Jun2009...all clean and clear since.

Best.

John

Christine Gabrielle
Posts: 20
Joined: Mar 2013

So glad you are clean and  clear.  With his surgery one month behind him Alan only just started the Chemo and radiation treatments this week.  Today is his third day and he is SO tired.  I understand that the third day after Chemo is the worst and then you begin to gather energy again until the next treatment.  We have packed a few extra pounds on him as I understand he will lose more than a few. Alan has the same cancer as you.  Was your surgery done at Stanford?  Everyone here is so amazing and so willing to share and support.  I am very grateful for all of you.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Actually a farily small town in Central Florida, but a great medical community, and my MD's are awesome... ENT actually graduated from Harvard and did his internship and residence at John Hopkins..

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

I had stage 4 base of tongue cancer, with lymph node involvement, diagnosed in Jan 2010, finished treatment in May of 2010. I had surgery, radiation and chemo.  I've been seeing Dr. Michael Kaplan there since day 1, and I trust that man with my life.  He saved it, as a matter of fact.  Where are you located in California?

Deb

Christine Gabrielle
Posts: 20
Joined: Mar 2013

We met with Dr. Kaplan yesterday.  He had a couple of options and I believe the news we heard was good news.  Alan's cancer is still in the earlier stages.  The plan will be to remove the tonsil and all lymphnodes on the right side of his neck.  10 days after surgery they will determind how much radiation he will need if any.  So we are hopeful, but realistic.  They are wonderful.  Sounds as though surgery will not be for a couple of weeks.  I will keep you posted.  Thank you all again for your fantastic support!  God Bless.

Christine

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

Hi Christine,

 

Welcome to the H&N forum, so sorry you find the need to be here.

 

I was stage IVa, scc, bot, hpv+ with 1 lymph node,  I had surgery first followed by radiation and Erbitux and I am feeling better everyday.

 

Stanford has Deb’s vote and that sounds good to me.  Go into this with your eyes wide open and once you have a good team, you’ll have a good plan.  You may have to make some treatment decisions, but the doctors will help you with them.  Pretty much your questions will be about surgery (yes or no), radiation (how much, how does it work, where and side effects) and chemo (what kind, how does it work and side effects).  For me they had me watch a film about cancer 101.

 

It is very scary at first and the reason he got cancer is who knows, but you will get through it and in a few months you will be cancer free and on the mend.

 

Best,

 

Matt

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

Everyone here is tremendously helpful and supportive, so you have found the right place--and early in what will be a long process, full of ups and downs.  My own advice is to have a plan for how you and your husband are going to manage the next several months and beyond.  He didn't have a choice in getting his cancer, but you both will have lots of choices and decisions to make.  There are a lot of things that will be under your control, so get the best information you can to make well informed decisions.  Of course, you can rely on folks here to speak from experience and knowledge of what we have learned in our own journeys.

My other advice is to know your enemy.  In the short term, cancer is not your biggest enemy.  It's the sometimes brutal side effects that can come from any of the three main treatment options--chemo, radiation, and surgery.  Learn as much about those things as you can, and know the signs of potential side effects, so you can be ready to respond to what comes along.

Mike

 

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

By all means trust what Phfrannie says, stay off the web, in most cases those postings go without a useful purpose except for venting on the bad stuff. The great folks on here have gone through it and as you will find out all have fared with different variations with regards to the side effects. They will be straight forward with the bad, and will be very happy to celebrate the good with you throughout you and your husbands journey.  I say that because as you have already come to realize he has to go through it with you standing guard next to him.

Welcome to the club, your initiation is tough road ahead but as John states very doable. So slide on over to the driver seat because yor husband will need yo to take control for a few months while he complains about the f---ing potholes. You have to remember to remind him that is why God created blacktop..........to fill in those potholes.

Remember..........everyone on here will help you both. I found this place after my surgery but before the start of radiation and I made the mistake of not visiting until well after radiation was over because I was afraid of the world wide web thing. I will celebrate 3 years of completing radiation the day after Good Friday, you guessed it................on Good Saturday.

Enjoy the day

     Jeff 

Christine Gabrielle
Posts: 20
Joined: Mar 2013

I thank all of you for responding.  I somehow feel that Alan is a little safer with all of you on his side and that is very comforting. I love that you all have a success story, yet here you are helping all of us that are just beginning the journey. 

Hope your day is wonderful!

Christine

katenorwood
Posts: 1812
Joined: May 2012

Christine,

Can't add anymore to the excellant advice already given.  Just wanted to let you know we are all here for your husband and yourself.  One day at a time.  Katie

debbiejeanne's picture
debbiejeanne
Posts: 2299
Joined: Jan 2010

christine, wishing u luck as you travel this road.  you have come to a good place as so many here have gone thru the same thing.  you and hubby will be in my thots and prayers.

God bless,

deb

HelenBack
Posts: 62
Joined: Jan 2013

Welcome Christine. My husband and I are new to this board. Although his diagnosis was back in January, we will only just be starting treatment next week. We went for several opinions and had Tors surgery and a neck dissection at Stanford. His recovery from surgery has been phenomenal and we have Stanford to thank for that. You are in very capable hands.

As you have already discovered, the people on this board are unbelieveably helpful and supportive, and full of wonderful advice. I don't yet have much advice to offer except I want to add to what others have said about staying off the internet. I was not able to do so and have learned a lot, but also have wasted countless hours and lots of sleep because of it. It just hasn't been that productive. You are much better off asking your doctors and people on this board what ever you want to know. And try to enjoy this time before treatment starts.

These days, I take one ativan before bed and it helps me sleep through the night a little easier. My husband usually takes one too.

If you are comfortable with it, it may help to add specific info to your profile regarding your husband's diagnosis and syptoms thus far, it may atrract people who share your specific concerns. You will find that most people here have so much in common anyway, and typically, this cancer presents itself at a later stage so most have experience doing both chemo and radiation. But perhaps your husband will not do both, there are a few people here who have had only radiation and I seem to remember one lucky dude who has had neither, surgery only.

Do you live in the Bay Area? We are over in Berkeley. 

Good Luck with everything,

Helen

 

HelenBack
Posts: 62
Joined: Jan 2013

I forgot to mention that I found it useful to record the doctor visits. Sometimes it's just so overwhelming that you forget some of the info. Many times I listened to the recordings and heard stuff that I missed during the visit. I used my Iphone which automatically has that feature. Obiously, you might not have one but if you can find a way, it could help.

Helen

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

Sorry you & your husband have to travel this road. I suggest getting a calendar/appointment book if you don't already use one. I used to be able to keep things like that in my head but the number of appts. just got overwhelming. If you can take an extra set of ears to your appt. Monday, that would be a good idea. It's hard to recall everything when you are emotional so that extra set of ears (in my case, my sister) can be very helpful. She took notes too. My advice to you now is to start fattening up your husband, any extra weight will come in handy. Throughout the tx, hydration and nutrition will play a big role.

I got thru with the philosophy of "take it as it comes and deal with it". I tried not to consume myself with worry about things or side effects that never happened to me personally.

I hope your husband's journey is not as difficult as he might anticipate.

Candi (St Louis,MO) 

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

essential for going through this treatment.....one day at a time....and only dealing with what you are facing today.  Not every person deals with every side effect....and those side effects come in infinate degrees.  Having some things on hand before he starts treatment will do wonders.  Creams for his neck, a case of Ensure....stuff that he will need.   Oh, and if you don't have an Amazon account, I'd sign up.  So many things can be gotten from them that you can't find locally, if you need them.  Their prices were pretty good, too.  I got all my Boost drinks there.

Christine Gabrielle
Posts: 20
Joined: Mar 2013

This is wonderful advice. I never would have thought of this until I needed it.  I really want to be as prepared as possible.  Is there a specific cream I should get?  Thank you again.  And if anyone else can think if anything he may need I'd love to know it now while I have the time to go and get it. 

 

Christine

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

started...Aquafor you can get at Walmart.  I bought it, but it was so so greasy, I couldn't stand it.  I used Calendula cream (suggested by the Rad doc)....picked it up at the Health Food store....I'd put on Aloe 99 first...let it dry and then use the Calendula.  Aloe Vera is also good to have on hand.  I also got chapstick....but not that brand....I bought Burt's Bees because it was creamier (not so waxy)....lips get pretty dry during rads. 

p

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Phrannie,

You had us well prepared for alot along this wild cancer ride.

Like you he dislikes Aquaphor, prefers Calendula and I just went straigt to the Burts Bees.  Warning....it comes in different colors.

He is not fond of either Boost or Ensure (very sweet) so I purchased a Ninja blender and chop everything and add protein powder.  Lots of fruit smoothies at the moment.  I know it will get worse though and this will not work for too long. I will need to find something he likes since Dr. Kaplan really wants him swallowing as much as possible.

Thanks again for all the great tips.  I'm sure you will hear from me again soon.  Take care.

Christine

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Just as a side note....

Ensure and Boost have tons of calories, minerals and vitamins..., more than likely much more than you or he can pack in than real food at the time.

There will come a point that you/he, will just be consuming calories for survival, and water for hydration...

Enjoyment from either food or water will be non-existant..., for several weeks.

Just throwing that out there..., there is going to be a period where he either can't taste, doesn't like the taste, or just doesn't feel like taking in calories or hydration..., both will land him in the hospital before you realize it.

Not trying to discourage you, and do all that he can tolerate for as long as can be, but realize it might change over time, and that's when you do whatever you have to do to survive.

Staying ahead of the game is key...

Best,

John

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

by the time he gets 3/4 of the way thru rads the chances are he won't be able to taste anything any way, especially sweet.  Longtermsurvivor taught me about counting the gulps it takes to get a can down.  I don't like the taste of either no way Jose...but once taste was on the way out, I just counted the gulps....usually 10 to 13 and the deed was done....calories are in, and I don't have to worry about it again for a while.  There were two things I was terrified of going into treatment....starving to death and losing my swallower.....I didn't heed the warnings about hydration well enough, and found myself on the other end of a bag several days in a row....dehydration makes a person so weak, so sick, feel so bad I didn't know what was going on with me.  Once rehydrated it was night and day....I didn't allow that happen again, when I couldn't drink water, I was pouring it down my tube by the clock.....had to give up drinking when thirsty, eating when hungry.....gotta do it by the clock to keep up with the body's needs.

p

HelenBack
Posts: 62
Joined: Jan 2013

Just want to put another plug in for a product called Orgain. It's a sort of natural, food-based, answer to boost and ensure. It's really not too sweet. I don't know why those others have to be sooo sweet. Making your own is ideal but I always have these on hand for those unexpectedly long doctors appointments and whatnot. 

They are a bit more expensive, but you can shop around online to get a better price. Usually, they sell for about 3 dollars each and if I see them at a price closer to 2 dollars, I snatch 'em up.

Are you guys doing rads at stanford? They sell it in the cafeteria if you want to try it first. 

I swear, I don't work for thje company, but I'm a fan. 

glad to hear you guys are doing okay.

Jon will start his last week on monday. he's doing great and we can't wait to ring that bell!

Helen

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Helen,

Thank you for the tip about Orgain.  Alan's complaint is that both Ensure and Boost are very sweet.  I guess radidation hasn't killed that taste bud just yet.  Chemo kicked him in the butt this last week but he is starting to regain a little energy.  We walk daily to hopefully keep his energy up.  We are going to JMMC and Contra Costa Oncololgy for his Chemo and Radiation. 

Helen I am so happy that Jon is doing well and that you are nearing the end of this journey. We have met so many wonderful people on this path and I'm sure you have as well.  Let me know when we can start celebrating, we will have a toast to Jon and his success (and yours).

 

Cheers!

Christine

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Phrannie,

You had us well prepared for alot along this wild cancer ride.

Like you he dislikes Aquaphor, prefers Calendula and I just went straigt to the Burts Bees.  Warning....it comes in different colors.

He is not fond of either Boost or Ensure (very sweet) so I purchased a Ninja blender and chop everything and add protein powder.  Lots of fruit smoothies at the moment.  I know it will get worse though and this will not work for too long. I will need to find something he likes since Dr. Kaplan really wants him swallowing as much as possible.

Thanks again for all the great tips.  I'm sure you will hear from me again soon.  Take care.

Christine

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Hello Helen,

Thank you so much for your post.  We live in Concord.  Helen it was actually one of your earlier posts that inspired me to join this forum.  Everyone was so kind and caring to you.  We will have to stay in close contact since our husbands will be going through this about the same time.  May I ask how soon your husband's surgery was scheduled once you'd gone to the initial visit at Stanford.  I will update our profile once we learn the exact terms and such.  Also....I do have an iphone and I love the idea of recording the doctors visits that is a wonderful idea.  We have grown children that want to know every detail but are not able to go to all visits with us.  Thank you again for everything and I will add both you and your husband to our prayers.

It's a beautiful day, enjoy the sunshine!

Christine

HelenBack
Posts: 62
Joined: Jan 2013

Well, yes you are very close indeed. Howdy, my neighbor over the hill!

Initially, we were just going to follow the first advice we got, which was to just go to the nearest place (in our case, Alta Bates) and get started on radiation, maybe Chemo. Then, a different doctor said, "get out of town, go to a teaching hospital with a tumor board" and so we did. We got a call back from Stanford and met with their tumor board.  After seeing my husband and reviewing his case, believing that my husband's cancer was in an earlier stage, they recommended surgery. Their feeling was that if you can avoid radiation in a younger person, then you eliminate the later risk of a secondary cancer from radiation 20, 40 years down the road. 

From the tumor board meeting to the surgery was two long weeks. He had TORS (robotic) surgery to remove the tongue tumor and a neck dissection, reomoving 45 lymph nodes.

I'm sure you will or have heard this already--for quite some time now, surgery has not been recommended for head and neck cancers as it was discovered that radiation and chemo worked just fine and the surgery for such cancer was VERY invasive, disfiguring and not always successful at removing the cancer. That has recently changed a bit since the development of a robotic surgical machine. It enables the doctor to get surgical robotic "arms" into the mouth (without breaking the jaw to get in there) and it allows them to see down the curve of the tongue better. It's pretty incredible, really. Recovery time is much faster than with conventional surgery. 

Now, that said, it doesn't mean that it's always the best plan to have surgeries first. In our case they wanted to try it in case it was early enough to do it and avoid the radiation altogether. The fact that my husband's cancer is HPV+ was a factor in their recommendation because some studies are showing that HPV+ cancer might be getting over-treated. It's been treated the same way as other oral, HPV negative cancers and some are thinking that they can try to de-escalate treatment for HPV+ cancers. 

But, as it turned out, the cancer was not early, there were multiple positives nodes, when only one had beed seen on the PET scan. So, it was only after his lymph nodes were removed that they discovered the other positive nodes. My husband's cancer was pathologically staged T2N2bM0. Stage 4a. He ended up needing both radiation and chemo anyway. His surgeon was surprised. 

So, would it have been better to have just done radiation and chemo in the first place and avoid surgery? Maybe. But then again, they wouldn't have known about the extra positive lymph nodes and maybe wouldn't have hit that side with enough beams. Or maybe, without knowing about the extra nodes we would have skipped the chemo, and possibly that would have been a mistake. Honestly, we just don't know. The surgery for my husband was no big deal and at least now we know exactly what we're dealing with.

Stanford is a great place to go, they really know this stuff. There are many ways to approach this cancer and there is a very high cure rate. So, listen to the experts, and don't hesitate to ask them to explain anything you don't understand. Take advantage of the time you have them sitting in front of you.

Good Luck on Monday! We'll keep in touch!

Helen

 

Laralyn's picture
Laralyn
Posts: 436
Joined: Apr 2012

Sorry about the circumstances that brought you (and all of us) here, but this group is amazingly supportive and informative. Don't hesitate to post questions, progress reports, or just come here to vent when you're tired or angry. We've all been through what you and your husband experienced. I went to Stanford for my second opinion and the people there seemed great!

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

Sorry to hear the news but rest for sure you found the right place to get a lot of answers to most of your questions. I was lucky most of my kids were all in there teens when I first got sick and the treatment made me turn into a mean old bear so they all left. Afterward I returned to my good old mr nice guy and enjoy life with the grandkids. Wishing you and your husband all the best in care.

God Bless

Hondo

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

My radiologist supplied me with Aquaphor which, to this day, I put on my lips at night and he also gave me Vanicream for my neck so I never had to purchase those things. Don't worry about stocking up too many things as a quick run to Walgreens for a break will do you good once in awhile. 

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Alan had his surgery last Wednesday at Stanford.  His 5 hour surgery went  7 1/2 hours.  Dr. Kaplan removed his tonsils quickly but the second procedure gave him a bit of a surprise.  The Lymphnode tumor was cuffed around his artery and had clamped the veins and nerves that were trying to compensate for the artery.  It took a long time to untangle and remove it all.  Dr. Kaplan said that he did in fact get all the cancer and had taken large margins to do so.  He also had to take a muscle and create a reinforced wall in Alans neck/throat.  Thank goodness for this amazing man!  We came home Sunday with only his feeding tube.  All other drains and such had been removed.

Slight glitch yesterday though.  Alan had been so constipated that once he felt he was going to have success he pushed really hard and pushed his feeding tube out.  I called Stanford and spoke with one of the Doctors that knew his case and was told to go ahead and take it out the rest of the way.  He had been healing well and they felt that taking it out one day early would be alright.  So today he is on clear liquids only.  We go tomorrow for his post op to remove his staples.  I believe he will not start radidation for a few weeks yet.  Thank you all again for your support and  guidance.  We are positive and he is doing well.  Bless you all!

Christine

 

 

Lovethesun
Posts: 12
Joined: Apr 2013

Hi Christine!

 

I am fairly new to this forum also and must admit that I read often and post little.  Glad to hear your husband is doing so well!

 

My husband was diagnosed in early February with right tonsil cancer and 1, possibly 2 lymph nodes involved. The tumor board met and said he had 2 options, either surgery and then radiation with possible chemo if the lymph node was not encapsulted OR no surgery and proceed with concurrent chemo and radiation.  After debating it, we chose to skip surgery and proceed with radiation and chemo.  Hubby has had 2 big rounds of Cisplatin and 35 radiation treatments. He has 3 more radiation sessions to go!  Seems like most here have had surgery initially.  We were told the regional cure rate/5 year survival rate were equal either route we chose  Oh and this was HPV + 16 which I have been told is more treatable.  It is a rough treatment, but doable. My husband did not get a PEG (should have) and is only drinking Ensure for his nutrition. Has lost 30-35 lbs.

Glad you are staying positive!  Hopefully our husbands will beat this and have NED in the near future!

 

Pam 

HelenBack
Posts: 62
Joined: Jan 2013

about your husband needing the Peg and not getting it. Whose idea was it for him to go without it? Both of our oncologists said my husband would probably not need it, because of his age (44) and good health. But he really doesn't have any weight to play with and one week into treatment, due to sleepiness and hiccups, he's already lost a few pounds. the whole thing makes me nervous.

How did your doctors say they would assess the situation? At what point did you feel that it was a mistake not to get it?

Just trying to get my head around it.

Thanks,

Helen

 

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Helen,

I have not started my radiation yet but I met with the radiation oncologist at the Mayo Clinic today and he said that they try to avoid using the PEG because it is so important to continue to swallow throughout the treatment because otherwise there is a chance that the patient can lose the muscle memory for swallowing and become dependent on the PEG long-term and then it is difficult to recover natural swallowing later.  He said as hard as it is, it is important to continue to try to get fluids and nutrition through swallowing and avoid dependency on the PEG.   Everyone is different, but he said that in my case the PEG will be a last resort to be used only if it becomes nearly  impossible for me to get enough fluid and nutrition through the mouth.

M

 

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

criteria for feeding tubes dependent on general health....how much you weigh going into treatment, and where you are located.  I personally know several people here who had HNC....every single one had a tube placed.  I started out at 97 lbs, so they gave me one a week before treatment started.  I didn't do too bad either in the weight loss department....only 16 lbs which is conservative with this disease.  It would have been hell to have gotten it when I really needed it, which wasn't until after radiation was over, and the adjuvent chemo began.  Within a couple days of 5FU I couldn't even put water in my mouth, and was already needing hydration via IV...I can't fathom what having to get a tube would have been like on top of the bleeding mouth sores, plus having to wait to use the tube. 

I know the Dr.s see many more people with HNC than is on this board....but I'd wager that more than half of folks end up with a tube before treatment is over. 

Glad to hear Alan got thru surgery, and is on the mend from that.  I think it was Matt who's tumor also had a stangle hold on his artery....scary business!!!

p

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

Helen, 

My husband started this process quite adamant about not ending the PEG, but at the end of week 3 of radiation and 3 days before his 2 nd Cisplatin blast he nearly begged for one.  (procedure was quick, and recovery was fast) He's lost 30 lb, but stabilized right away after the tube. He does admit that he should have just had it from the beginning, but I think his Doc appreciated his strong will, and hoped he could make it as much as he did. In the end, I think he was shocked at how difficult it was to get anything down...mainly due to bad taste and gag reflex. 

He did try the much touted canned peaches and the magic mouthwash, cheesy eggs, etc..just couldn't do it. 

 

On a positive note, he's 4 rad's from the finish line!!!!!

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

Almost done!!  I loved finishing radiation.  I didn't have to go anywhere every single day of the week....I could sleep in,  doze in a chair, and rest up.  You bet that's a positive note....ring that bell!!

p

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Hello Pam.

I thought I'd check in and see how you and your husband are doing?  He should be done with treatments by now.   I hope he is now on the mend and has this behind him. Stanford is amazing!  My husband has only just started the treatments he had to recover after his sursgery.  His first round of Cisplatin started Monday and he will have it  2 more times 21 days apart.   Radidation is everyday Monday through Friday. He has been stubborn about a PEG tube so I packed a few extra pounds on him as he was healing from surgery.  We will see.......

Hope all is well with you, keep me posted.

Christine

HelenBack
Posts: 62
Joined: Jan 2013

HI Christine,

Don't you hate those surgical surprises....our surprise was that there were multiple nodes. Darn it all! 

Oh, and the constipation, you should plan to stay on top of that before treatment starts. My husband had that problem from the surgery (pain meds) and then again from the chemo. Next round of chemo we will be prepared. Ducolax was the suggested product from our chemo guy. And, of course, hydration.

Thanks for the update, I've been wondering about you guys!

Helen

HobbsDoggy
Posts: 165
Joined: Feb 2013

Based on what I went though I suggest you have folders and binders to keep all the records you get and also to set up a calendar with appointment dates and reminders. I found very quickly that if I did not write down my questions I always forgot one or more when I met with the doctors. I also started writing down their answers as soon as I left the meeting, but not during the meeting so I could give my full attention to what they said.

A team of doctors is critical and that the team works together is the most important part. Sounds like that is in place for you, but just check that the doctors are communicating.

Be prepared for a lot of side effects and slow recovery, if things are better that's great, if not you are prepared. This is a treatable cancer and many (most) outcomes are good.

If there is a cancer support group I suggest you and your husband join. This group is fantastic, but meeting with others who are battling cancer or who are survivors face to face is a major help to me.

Will be thinking of you and your husband and wishing you the very best.

Christine Gabrielle
Posts: 20
Joined: Mar 2013

That was great advise to get a calendar, I have done so and have started getting all his appointments on it. We already had the files and binders in place.   We have a daughter getting married on May 31st, so there are alot of appointments with regard to her nuptials as well.   I am lucky that my employer will allow me to work from home so I am able to stay home with him during his treatments.  We head back to Stanford today to find out our next step which I believe will be radiation.  Did you have a feeding tube during your radiation?  My husband had it after surgery and hated it.  I am fearful for him not to have it, but I know we will say No to it.  He is a bit over weight by about 25 pounds.  Thanks for your input, it is so appreciated.

Christine

 

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

This tube thing is really not that critical one way or the other at the start, and is debated ad nauseum on this board.  Don't sweat it.  I have been through radiation two different times, and did not get, nor did I need a tube either time.  The first time I was able to eat solid food throughout treatment.  This more recent time I was not, but still took in enough in the way of ensure or boost or whatever that my weight did not drop much at all.  It isn't wrong to get one, but it is certainly not always necessary.

 

Pat

Christine Gabrielle
Posts: 20
Joined: Mar 2013

Thanks alot for calming my nerves on this issue.  My husband had his surgery one week ago today, came home late Sunday and has walked around the block 3 times every day since.  He is swallowing pretty well at the moment and that is with reconstruction to his neck/throat.  He is a young 63 year old with a bit of weight he can afford to lose.  So I will not press him on the feeding tube issue.  Thanks again Pat.

 

Christine

ET@cowboy
Posts: 15
Joined: May 2013

Good morning,  I had Tors in Feb and neck dissection in march. same issues with the carotid artery and neck reconstruction. Once he feels good pack on the weight before Radiation. I wouldn't believed radiation would be more painful than surgery but it is. After surgery you begin to heal. During Rad it gets worse the longer it goes. HPV+ SCC is extremely treatable. The info on this site is spot on. The side effects will come just pray for less intense ones. Even though it is hard at times remain positive. Its like a bad ride at an amusement park. Everyone here will tell you it will get better. Good luck with the rest of the trip.

ET@cowboy
Posts: 15
Joined: May 2013

Good morning,  I had Tors in Feb and neck dissection in march. same issues with the carotid artery and neck reconstruction. Once he feels good pack on the weight before Radiation. I wouldn't believed radiation would be more painful than surgery but it is. After surgery you begin to heal. During Rad it gets worse the longer it goes. HPV+ SCC is extremely treatable. The info on this site is spot on. The side effects will come just pray for less intense ones. Even though it is hard at times remain positive. Its like a bad ride at an amusement park. Everyone here will tell you it will get better. Good luck with the rest of the trip.

Bootsierose82
Posts: 4
Joined: May 2013

Hi , my husband was diagnosed with sinal nasal undiffericiated carcinoma recently 4-17 13. We have had to travel 7 hours for his treatment in Dallas Texas. He has already started treatment  on Monday with radiation and chemo. He  has been given the nausea meds already but he is still very nauseated. Is this normal? The nurse at the Dr. Office says its important for him to take the nausea meds. He was also prescribed Ativan for anxiety . Does Ativan also help with nausea also?  He is also having some constipation problems , I guess because of all the meds he is taking ( painkillers and nausea meds) I just need advice on how to help him through this. He was very healthy before all this happened.    Thanks any advice is truley appreciated.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

All of what you mention is common, but he also doesn't have to stay nauseated. If  his meds aren't working, let them know and try something different.

Myself and others that had multiple doses of chemo simultaneous were given Emend, best stuff ever, but expensive and you only take it each day of the first three.

During concurrent like your hubby I had Zofran, or phennigrin or similar..., just to knock the edge off.

One thing that I highly recommend, stay very, very well hydrated. That will make you sick and put you in the hospital quick..., lack of hydration.

The anxiety meds work great for the mask if he's having issues, worked like a charm for me, but after a week I could handle the routine without meds..

Stay a head of the pain and you'll be much better off...

We were all in perfect health, other than having cancer...

He'll make it through, it's rough, but very doable...

Check out the SuperThread, it has tons of excellent information...

Best ~ John

Bootsierose82
Posts: 4
Joined: May 2013

Thanks so much for the advice. He got up this morning feeling a little better. I will most definitely chek out the threads and stay on top of things. Thank you for the warm welcome and God bless!

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Post up your question on a new thread and you'll get many more welcomes and responses I'm sure...

The SuperThread is the first thread on this forum, compiled by many with tons of links and great sources of info...

Best,

John

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