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New to this, Husband just diagnosed with stage 3 left tonsil cancer

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Hello,

New to this , electronically challenged, but will try.

My husband ron was diagnosed a few weeks ago with left tonsil stage 3 cancer. He had a left tonsilectomy and pathology put it as squamous cell carcinoma.

His ENT set him up with a day full of appts with oncologists and radiologists.

He was seen by his dentist and lucky to have healthy hard teeth.

He got his stents for his teeth and flouride trays.

Has to do 3 rounds of cisplatnum along with 7 weeks of radiation, IMRT.

He will have the mask fitting on wednesday and then appt to set up schedule for treatments.

I am his support and caregiver.

overwhelmed, stunned, appehensive and scared to hell.

I am assuming he will be off work for 4 months to 6 months.

He got a packet from the american cancer society today with statistices dated 2001 that survival rate was 55 or 56%. That sure was unnerving when the doctors say "its curable"

any advice is welcome.

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

wants to join...You have found the most informative, supportive, and knowledgable group on the internet, tho....and you found it before treatment even has begun....GOOOOD!! Smile 

Whoa...I guess the information you got from the AC is old....older than the hills.  Trust the Dr.'s and what they say....survival is WAY more than that....more like 80% to 85% these days.

Everyone is stunned, apprehensive, and scared as hell when they first hear the news....for many of us, this is the first time in our lives were faced with an obstacle that we ourselves cannot get around without help.  If you go to the main page of this forum....where all posts are listed, you will find the Superthread at the top (it is always there)...and well worth reading.  It is packed full of information on the pitfalls of certain parts of treatment, what to look for, etc.  There are some basic side effects of treatment that pretty much everyone gets....but the degrees of how bad varies from person to person. 

There are many other caretakers on this board and they will tuck you under their wings, so you never feel alone.....us patients won't leave you, either....but the caretakers understand the emotional turmoil you're going through better. 

I will tell you tho, that your husband will come through this just like the rest of us have...it's not a cake walk, but it's doable, and he will do it. 

Feed him good for as long as he can....have him OD on all his favorite foods....the more fattening the better. 

Stick close to this board, I'm sincere when I tell you that you will never be alone in this.

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou both and matt for answering.

I am a nurse at his primary care doctors office and have been at the begining of the diagnosis for patients but I am the one who finds their next route of doctors and get those doctors preapproved by insurance and then I hardly ever see them. and I have never heard in my 16 years of nursing , of tonsil cancer.

Great to hear about the percentage being so high. cant beleive they have not changed on the AC since 2001.

 

I will be crawling these pages daily for info and I have saved you to my favorites to keep up on any info you advise.

Such a rainy memorial day here, fits our moods today.

I hope every one is good.

Thankyou so much for responding

 

 

 

 

CivilMatt's picture
CivilMatt
Posts: 3090
Joined: May 2012

 

Hi Janet,

Welcome to the H&N forum, so sorry you answered yes in the cancer column.

I was scared too, but tuned in here and got some good advice prior to treatments.  Follow Phrannie’s advice and check-out the Superthread, it may scare you some more, so read it with one eye closed.  You both will be ok, just remember the objective is to get through these next few months and then you can start healing and adjusting to your “new normal”.

As soon as you are ready, ask any question you like and someone will chime in to help you out.

You will be ok,

Matt

 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou matt, we will be asking a lot of questions in the next few days.

NoDuck
Posts: 134
Joined: May 2012

My hubby had the exact diagnosis and nearly the same treatment. He did not have surgery because of the way the cancer hadmetastasized to 4 lymph nodes and was wedged too close to his jugular and carotid. 

May 30will be one year since he started treatment.  He finished July 19 2012.  He is not with me this weekend -- he is hunt**** black bear and wild hogs in the panhandle of Florida!! And we live in Oklahoma so just the road trip was quit an endeavor.

yes, there were lots of prayers that he would survive the treatment. It absolutely brought him to his knees.  If there was a side effect that was even remotely possible, he got it.  And he got c diff (like staph of the gastrointestinal system) that hospitalized him for a week. 

Expect tough but survivable times. I was exactly where you are one year ago and this weekend I am alone and in charge of the remote control because he survived. Your hubby will to.

Come here often.  Read old threads.  Several folks on here with the exact same diagnosis -- Even down to being the LEFT tonsil.  Seems lots more left than right (okay Skiffin, I left that one wide open for a snappy comeback GRIN)

Deb

MarineE5
Posts: 762
Joined: Dec 2005

Janet,

I can't add much more to what Phrannie and Matt have mentioned already. Yes, the data that you read is a bit outdated, when I was going thru Base of Tongue cancer in 2004, I was told by those here then that the data seemed to run about 10 years behind. That is for the Stats, not the treatments.

One person that is here "fishmanpa" also known as "T" recently completed his treatments for Tonsil cancer, I think he may be 3 weeks out from treatments now, so he will be a great source of information for both of you as Marcia was his caregiver as well. You and Ron are just starting and "T" is just finishing, can't get more up to date info then that.

As Matt stated, any questions, get them off you mind and answered here pretty darn quickly.

My Best to Both of You and Everyone Here

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

I was diagnosed in July 2011 with stage 4a scc of the right tonsil, went to 1 lymph node on the rt side of my neck..had only the rt tonsil removed..in aug I started what my oncologist said was going to be the mother of all treatments..evey 21 days I had cisplatin, toxotore, and a 5fu pump...then in Nov I started 7 1/2 weeks of rads with 1 day infusion of cisplatin..while I was fortunate not to experience a lot if any of the nasty side effects of chemo & rads, it's tough but doable. My advice 17 momths later is be proactive, ask questions , if the mask doesn't feel right tell the techs, they are there to help you...eat when and what you can to keep up your strength, get out of the house when you feel like it , tell the docs about any symptoms whether you think their minor or not, take meds as your prescribed but never let pain get ahead of you , importantly stay hydrated . we are all different in our treatments and reactions to the meds, but the one thing in common is we are all banded together in this fight. You will find a wealth of knowledge on this site.

 

Blessings & Light

 

Linda

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

how long were you out of work?

and how much pain meds did you have to take?

ron will be doing the chemo and radiation at the same time together.

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

linda

ron will be starting on cisplatin, what is 5fu pump? I have seen that listed several places but never heard of it.

thankyou

janet

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

5fu is another chemo drug , it was the last one  i received during all day treatment , it's in enclosed in a device like fanny  pack but with a stap..I wore it from Monday to mid/late Friday afternoons. The following monday i would get a neulasta injection to maintain white blood cell counts . I had and still have a power port ( under the skin) in my chest  it's where I received all the cocktail infusions , plus it allows for all blood draws..the pump to me was more of an annoyance than anything else..dressing, sleeping , driving a car. During all treatments , chemo and rads , and for 7 months after I was fortunate that my company allowed me to work from home. As for the port I'm hoping to have it removed in July after I see my onco in late June. 

robswife87's picture
robswife87
Posts: 182
Joined: Mar 2013

Rob was diagnosed Stage 4a SCC HPV+ Left tonsil 4 lymph nodes T2-3N2bM0 in March. No surgery. Lost 2 teeth

He has 4 rads and 1 chemo left. 

Has just about every symptom listed and is haveing a rough time. Has only eaten by PEG for the last week. Still trying to swallow water. The thick mucous is what is really killing him right now. 

Keep him hydrated. Rob has gotten dehydrated several times. He now has hydration 3 days a week. He is on 35 Rads and 7 weekly Taxol and Carbo. He vomited for the first time yesterday. He is having a lot of acid reflux. On his second bout of thrush. Very painful for him.

Your husband and mine will be survivors although while going through this horrible treatment they may not feel like they are going to make it.

Be prepared to take some crap from your patient. Try to remember that it is not you that it is the treatment that is making him be a little gruff with you and everyone else. They are in pain. Rob has never been snippy with me much but this is a whole new territory and I try not to take it personally. He does thank me every night and apologizes for putting me through this. He has never been a great sick person. Even the kids are hanging tough and luckily old enough to understand that this is not there dad right now.

Being the carefiver is rough, you are doing everything and you are emotionally and physically being taxed. Rest when you can. 

You both will make it. Keep looking for the light at the end of this tunnel it is there.

Sandy

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Thankyou robswife,

ron has never been sick except one time with pneumonia in the 32 years I have known him.

this should be an experience.

I fully expect him to dehydrate, but the dr's dont want to start with the peg tube. I dimed him out to the oncologist at our appt last week and he threatened ron to be put n the hospital a couple days a week for IV if he needed.

ron didnt drink enough during the horrible 2 weeks of recovery from the tonsilectomy.

the pet scan showed uptake in one node but they are not sure since it was so close to the surgical area and he is still healing.

But he is back to eating good for now, teeth are great thank god, and he is still working but plans on going out as soon as chemo starts.

He is a workaholic and it should be interesting to see him reinquish control.

I am very grateful for the postings and comments , please keep them coming.

thankyou

janet

robswife87's picture
robswife87
Posts: 182
Joined: Mar 2013

either, He got it about 2 weeks ago. He lost to much weight, mostly because of the dehydraton. 

He has been straight PEG for feeding but tries to continuse to swallow water to keep those muscles working. He is fighting bad thick musous which I know is causing his low grade nausea. Going for L-glutamine today, hoping it helps. Trying to get him to take his compazine has been a huge fight.  

Rob has always been a huge workaholic and this has been very hard for him. Staying home is not his thing but just walking out to the deck is very tiring for him. He has never really been a sick person. The flu about once every tens years and he continued to work. 

Continue the good fight, you both will survive and life will be good once again. At least that is the thought that gets me through this.

Sandy

HelenBack
Posts: 63
Joined: Jan 2013

Just a quick hi! I notoced some time ago that your husband and mine have the exact same pathological staging. same side, same number of nodes. Maybe not so unusual, but I happened to notice. But I really came to say that my husband has has good results with using papya enzymes for breaking up mucous. His rad onc suggested them and he says they work quite well. They come as little chewable tablets. I think if he can't swallow he can chew them and they'll just dissolve in the back of his throat and start chipping away at the mucous.

Hang in there! Finishing this week, right?

Jon just finished Friday and his pain has increased a little. It's harder to eat still and I'm concerned about the continuing weight loss. His radiation burn was at it's worst Friday night and then two days later looks totally fine. It's nice to have something improve.

Take Care,

Helen

robswife87's picture
robswife87
Posts: 182
Joined: Mar 2013

I will definitely look into the papya enzymes. He started using some L-Glutamine yesterday and I heard him tell his mom that seems to help. 

4 more days and done. We know he will still cook for a couple weeks but just to be done with the daily stuff will bring some more light.

He does still swallow pills and water just no food. He tried a bite of chicken today and it just killed his tongue. That seems to be the worst thing that and the mucous. But no vomiting today from it and less spitting rubber cement.

Thanks for the info and prayers to both of you

Sandy

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

6 months.....however it would have only been 5 months except we had a little problem when they placed the port.....my lung got punctured (one chance in a thousands.....) so I ended up recovering from that and going directly into treatment from there.....I too had 35 daily rads and 3 Cisplatins, 21 days apart.  Then 3 more Cisplatins with a 5FU pump after chemo was over.  It's a little pump you wear, that pumps the chemo 5FU into a person for 4 days, continuously.

Be aware that tho your Dr. may not want to give Ron a PEG tube now, he still may end up with one.....I got mine before treatment and was grateful even tho I never used it until after radiation was over.....and by that time it was my only way to get needed nourishment and hydration.  My experience here on this forum is it's the rare duck who gets through this without a feeding tube. 

Glad to hear you put this forum in your faves.....as treatment progresses you will have questions, and you'll get answers here that you can take to his Dr.'s and say...."what about this?"...."Can we try that".....My Dr. was always open to things, and many of the great suggestions I got here he'd never heard of or thought about.  It's kind of like making all the good Dr.'s who have treated the patients with HCN put their heads together as a group........by proxy....you are the proxy agent.....LOL.

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou so much "P"

I was wondering about that 5fu.

I will be on here a lot and scanning for all of you all's postings and advice to ppl.

It helps with my anxiety.

seeing these boards comfort me greatly.

THANKYOU, ALL OF YOU

janet

laurabeau
Posts: 31
Joined: Apr 2013

My husband has been on this treatment journey for over three years.  My husband's  cancer started in  the neck muscle. He had surgery and clean margins, then chemo and radiation. A year later it popped  up on the scar line.More surgery, radiation and chemo.  Clean margins  with that surgery As well. Another year and hot spot on the tonsil showed up on the Pet Scan. More surgery and margins weren't clear and 1 lymph invasion. We were then sent to Houston. Recommendation of hitting hard with 3 drugs cysplatin, Taxotere  and one other pack take home as well as 8 hr chemo once a week. Load up dose of erbuitux and then out to Houston for 7 weeks of radiation to throat area. He worked 1/2 days once the area healedand although he has lost a lot off weight he feels good. Netherlands chemo was rough as we'll as the radiation and he drank tons of Walter throughout.  Didn't have the peg tube (which was amazing to the Doctors) and he was never dehydrated. Oh and he took no pain meds. A lot of his no pain was due to so many nerves cut in surgery.  He had no pawith itch the sores in his mouth.  There is a light at the end of your tunnel. Your husband can get through this. Pet scan and cat scan have been clear since the end of treatment in January 2013 for my husband. Thy figure the source of my husband's cancer was the tonsil all along.  

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I too was Dx with STGIII SCC Tonsil Cancer (right) and a lymphnode, HPV+... January 2009.

Tonsils came out first, port inserted next, I had no PEG.

Similar to a few, I had nine weeks of Cisplatin, Taxotere and 5FU... in three week cycles. That followed with seven weeks of concurrent weekly Carboplatin, and 35 daily rads sessions..., like Phrannie, daily Amifostine injections in my stomach.

The statistics you were given are pretty old... current survival rates and cure rates are much better...

Treatment is still very rough, but doable with the right attitude, plenty of hydration and calories, and knowledge...

You have found a great place as for knowledge and experience here...BTW all scans have been clean and clear going on four years in three weeks...

Best,

John

GBC52
Posts: 2
Joined: May 2013

My husband was diganoised stage 4 w/ tonsil cancer. His treatment is to be 3 Cisplatin treatments and 33 rad.  He has had 1 chemo treatment and 13 rad so far. As I am reading on here, I get very concerned because a lot of you have had surgery and have had different kinds of chemo along w/ more rad treatments and the Cisplatin..  I concerned his treatment plan is not enough. His medical oncologist showed us a print out that this is the ACC society recommendation but I am not sure when they updated their information.  

We got a third opinion and all agreed not to do surgery because chemo/rad has the same outcome.  We are hoping rad will burn his tonsils up.  It was also suggested that we get the feeding tube and like some others on here my husband has been in the less than 10% category.  He had to have a 4" incision in his abdomen to input the feeding tube because his stomach was to high. He also had hiccups w/ chemo and we had no idea that could be a side effect. But he was not nauseated at all.  He received fluids for 5 days after chemo which I think helped him a lot. 

We thought it would be much later down the treatment path before he would need to use the tube.  But He started using ensure in the tube this week. 

He has lost a lot of weight and we would love to stabilize his weight, but I Am not sure it is going to happen. Doc is telling him to eat anything that he can get down, But I worry about the sugar content, because we all know sugar feeds cancer.  

I want to juice for him but we have not had any support for this from any of the medical staff that we are working with.  There is not a Naturpath doctor in our area either.  I wish the medical field and the integrative field could work together, because I think our health would be better if they did.

I also want to say that I already love this site.  I have been reading on here many sleepless nights and you all are so kind and helpful.

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

gbc52

I am also new with my husbands diagnosis, they are very helpful , especially "T" and for the life of me I cant remember her name off the top of my head but I think its phranni

she has posted on this thread and so has he and they have both been wonderful and supportive.

cistplatin is a type of platinum chemo. but my husband takes a big does of it on day 1 of radiation start and days 21 and final  another does , I think its supposed to be every 21 days during radiation and he will get 7 weeks of that.

He had a tonsilectomy and that is how we found the cancer. no other surgery. we are doing all the radiation asap to try to avoid all the neck disections and taking out soft palate and parts of the tongue since they do believe that the tonsil was the primary site but they did not have clear borders.

Out radiologist does not start with feeding tube and neither does the oncologist,they feel since my husband is 40 pounds overwieght he would be fine. I dont know, that tonsilectomy was harsh and could barely get him to drink. I told the oncologist that and he has threatened that if my husband doesnt drink enough he will hopitalize his but in a heartbeat.

I used to work for a family practice dr that also was had holistic training. I dont think the juices can be used very well since they mostly contain natural sugars. but keep researching vegetables and a good juicing machine. I am in the process of that to find extra supplements. Our radiologists does not want any supplements in the form of vitamins or herbs to help due to not sure how they would react or interfere.

and we were told that if the cistplatin does not tolerate well then they would use alternate chemo weekly, I am wondering if that is why some ppl have other chemos?

Please keep me updated on your husbands progress and may god be with you and keep him strong and you too.

janet

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi Janet,

unfortunately i dont have anything to share about your husbands cancer for i had NPC stage 3 in 2000, i just wanted to let you know that whAt e eryone told you is true and awesome advice and i was treated one year before your AC pamplet was written an on September 28.2013 i will be celebrating 13 yrs NED, so dont focus on that or anything negative go into the whole process thinking What do we to to WIN, then WIN!  You support, he'll fight and together we will all pray, and although its a long and extremeky rough haul before you know it you'll be looking back and be like whew well thats done!  I was out of work for 9 months back then, i developed food aversion and dramiticallh lost weight, not to bad for a girl, but caused me to be very weak for sometime afterwards!

hang in there and if you need us for anything you know where we are!

 

good luck on your journey and God Bless you both

Rachel

HelenBack
Posts: 63
Joined: Jan 2013

Welcome to the group no one want sto join, but are glad they did. You, I'm sure have read so much on here and will gets tons of good advice.

My husband had the exact same treatment as yours will have. It is absolutely the standard up-to-date protocol. Whether a person hads surgery or not depends on a few things. Generally, surgery is done these days to get a solid pathological staging. It can help the doctors to be very specific with their radiation location and can detremine if you need chemo or not. For example, my husband's doctor thought that his cancer was at an earlier stage than it turned out to be. He wanted to do surgery to find out exactly how many nodes were involved and whether they showed extracapsular spread. The hope was to mabe dial down the amount of radiation and avoid chemo altogether.

But, it turned out that a few involved nodes didn't show up on the PET scan and one had extracapsular spread and so he would have the full rads and chemo anyway. Having the surgery and waiting to heal postponed the start of treatment. Fortunately, my husband had a very easy time with healing from the surgery so it was no biggie. Sometimes, after treatment doctors do a neck dissection anyway to make sure the nodes are cancer-free. I'm not sure that that is still done as I haven't heard of many here doing that recently.

But, if we had to do it over we probably would have skipped the surgery and would be a couple of months out from treatment by now (insted of a couple of days).

Also, I'm pretty sure the idea that cancer feeds sugar has been debunked. Of course, sugar isn't good for you and its best to get your nutrients from haelthy sources if at all possible, but I think most here have been pretty comfortable with getting calories any way they can. Its' only for a couple of months after all.

We never went for that ensure stuff but instead made healthy protein rich high calorie smoothies. I used a lot of organic whole milk and yogurt. I made smoothies with banana (ripe is best) paenut or almond butter with flax meal and whole milk. I used apple or orange juice with whole milk greekyogurt, banana, protein powder, frozen blueberries and kale (you have to have a good blender to do the kale and wash it really well). I would add oil (flax or olive) to things to get the calories up. It all worked great until recently. Now my husband is just soo smoothied out.

Also, where sugar is concerned, I think thrush is more of a concern than feeding cancer. My husband takes a high-quality acidopholis spplement and hasn't had thrush. Don't know if that's the reason but we're so glad he didn't get it.

Good Luck, you'll get through this.

Helen

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Helen,

would love some smoothie receipes and the name of the acidophplis.my husband isnt a yogurt or kale person but he likes most everything else.

How is your husband doing so far?

god bless

janet

HelenBack
Posts: 63
Joined: Jan 2013

I meant to reply to you earlier. Darn, there sure are a lot of newbies here lately, it makes me sad that so many are going through this but at least you/we are in good company. 

For the peanut butter one 1/4 cup peanut butter, creamy type, one ripe banana, two scoops protein powder, 1 tablespoon flax meal one cup whole milk or more, and a little ice but your husband may prefer room temp later. I usually doubled this, but for this amount it should come to about 750 calories in a pint. You can play with it to amke it sweeter (honey) or thinner, more milk, or more caloric (oil)

The other smoothie I like to make is just a cup or more of apple juice, maybe a splash of prune juice, a ripe banana, 2 tbs flax meal, 2 scoops protein powder, one cup plain yogurt (full fat of course, and greek has even more protein but is thicker), but vanilla would go nicely, a handful of dino kale washed well, and a handful of frozen or fresh blueberries. I know you said your husband doesn't like yogurt but it's so good for you and has a lot of protein. I think masked with apple juice and/or honey he might not object. As time went on, I had to adjust some items due to thickness or temperature issues. 

My husband started each day with one of these smoothies even while he was able to eat. I'd make it in the morning and he'd drink it on his way to rads. I have a travel smoothie cup that is 28 oz. The idea was to get good protein, fiber, and healthy fat into him. He's a vegetarian and getting the amount of protein that they suggested was a real challenge. For many people just blending meat and broth would work. 

The chemo doc said no antioxidant supplements since the whole point of chemo is to oxidize. That made finding protein powder-type meal replacements a challenge. I went with just a grass-fed organic whey protein with no added stuff. I also recommend a product similar to ensure that uses organic whey, called Orgain. From what I understand, whey protein is particularly good for muscle building due to the naturally occuring amount of glutamine. And to top it off, I would add a tsp of glutamine powder, but not always.

My husband really has done well. He has battled lingering nausea and has some mouth pain from mucositis but not too bad. His mucous and saliva issues are not bad. He sleeps weel each night and has some energy. He only started taking pain meds last week (his last week of treatment) which has had the unfortunate effect of constipation. Definitely stay on top of that! Every single med will cause it, especially the chemo and anti-nausea meds. His doctors didn't mention any need for laxatives before chemo but they should have. 

If you are shopping for things like protein powder, orgain, acidopholis, neck cream or aloe, flax meal, papaya enzyme, stool softeners, I would suggest using Vitacost, vitamin shoppe and amazon and do some price comapring. These items can be pricey, but especially so at a pharmacy or natural foods store. The acidophilis we use is called ultimate flora critical colon. You should probably ask your docs first, but all these items were heartily endorsed by the nutritionist at UCSF where we were treated. 

Fancy products or not, it's just important that your husband EAT and DRINK a lot. The infusion center at UCSF was a busy place and we set up regular iv hydration appointments to coincide with his rad appointments to start after the third week. I didn't want to "wait and see" I just knew that he would be better off if that was all arranged ahead of time and that was true, so if your place is busy as well you might want to set that up from the beginning.

Well, I went on a bit more than I planned, I hope it helps and that your husband does well. Don't forget to take care of yourself, go for walks, meet with friends if you can. Vent when you need to. 

Take Care,

Helen

 

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