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HPV Origin Throat Cancer stage4

hsnmp1978
Posts: 44
Joined: Feb 2013

My husband has HPV Origin Throat Cancer stage4 and he is only 36 year old. This came suddenly so fast in our life unexpected!! and we started his treatment last week. His protocol is 36 radiations and 3 chemo treatment. He has surgery for port and g-tube before we started this therapy. He is also starting acupuncture once a week from this coming Saturday. We are doing all we can I am searching all on Google about this and also change his diet little bit. First week went so fast because he did not had any side effect (24 hours water fasting for Chemo worked really well for him) and this 2nd week of his radiation therapy he started  to feel dry mouth and lost his losing taste bud (it’s even pain full to think about). I would like to know what we can do to prevent more harm to his mouth??

He still at work and he want to work as much as he can and I don’t see any harm in there but I would like to get some feedback from all of you.

Please give us any suggestions you  may have for anything.

Thanks,

Hetal

Hello Everyone,

First thank you so much for all the information and support you all provided....second I don’t know how to add new comment to each of you so I will try to give more information here.

Water fasting is ongoing research at Mayo clinic and I found many people have successes with this. "Water fasting" prevent chemotherapy side effects may be not all but some and if you Googel it you will find lots of articles on it. My husband did fasting 24 hours before chemo therapy and 12 hours after (can’t do more) but I think it worked he felt fine and did not had any vomiting or tiredness and he also had hydration therapy for next there day after that.

My husband work as warehouse manager but it’s not hard work and unfortunately can’t work from home.

Yesterday he can’t eat during dinner so I had to make some milkshake for him. It’s getting harder and harder each day to eat for him.

 

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I was diagnosed woth STGIII SCC Tonsil Cancer and a Lymphnode also HPV+ January 2009..., very much the same treatment protocul...all via the power port you mention.

Nine weeks (three week cycles) of Cisplatin, Taxotere and a week of 5FU... That followed with seven concurrent weekly doses of Carboplatin and the 35 daily rads sessions...

First, relax a little and step back... This cancer is very treatable these days with exclellent results... Myself and many here are "living" proof... I finished up treatment Jun2009, and all scans have been clean and clear since.

It's not easy, and at times it can be pretty difficult..., but it is very doable.

Not sure what the 24 hour water fast is..., one thing you will hear here is to hydrate, hydrate, and hydrate... Even the chemo center will hydrate you to one, flush the chemo, and two..to keep you from becoming dehydrated.

Dehydration will put you in the hospital relatively fast and for more that a few days...

For most of us the loss of taste and saliva with chemo and mainly rads is common... More than likely it's going to happen. And it's going to last for several weeks if not a few months.

Good thing, for most of us it returns to some degree... For many like myself, I have 100% taste back and around 95% saliva... It doesn't return fast, and actually it's very slow..measured in weeks at best, months more than likely.

The first thread on this forum is called SuperThread..., check it out, it has tons of great info to help you with questions, and knowledge you are or will be seeking.

BTW, I do mainly all computer work, and it was fairly easy for me to work from home the entire time.

Each of us are different, recover, heal and respond differently.., so it's really difficult to say how anyone will do, unitl they get to that point... Their body will dictate what they can or can't do. But recovery, rest and healing are paramont for the best results...(I feel)...

Again, welcome...

Best ~ John

 

 

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

My experiences were similar to those of Skiffin16. I had a stage 3 HPV+ squamous cell tumor in my throat. Tough treatment protocol: radiation 2x a day for seven weeks and Cispaltin chemo once per week for the same period. Lost taste buds, sore throat, battle with thrush and lost 100 lbs. I used a feeding tube because food tasted like dirt and eventually my thoat got pretty sore.One thing I learned is that Cisplatin can be tough on the kidneys and staying hydrated is important; I drank 60-80 ounces of water every day. This was in 2010.

 

Today I am cancer-free (3 clean scans), workout 3x per week, and my tadte buds are at about 90% (which beats zero). My weight has been stable for 18 months and I feel terrific; by the way I'm 68 years old. Hydrate, hydrate hydrate during treatment, use aqquafor on your neck after rads, and rinse and gargle with a mild sal****er solution 10-12 times a day. You will survive...

Army_Guy

HobbsDoggy
Posts: 165
Joined: Feb 2013

My condition and treatment was very similar to your husbands. I wish I had news that you can prevent the side effects. Some clinics and doctors are a little better at controlling side effects than others, but there will be side effects no matter where you get treatment or so I understand. I also lost taste and had dry mouth. I am just about 2 months after my last treatment and slowly, very very slowly getting a little taste back. Dry mouth is still a problem. I have done a fair amount of research and find that most lose taste and have the regular side effects. Most of them pass as time goes on. Starting from the beginning of the third month after treatment up to a year to be almost or totally gone.

Yes the side effects are brutal, but the cancer is a very curable type so the treatment is very much worth the pain and issues that come with the treatments. I also suggest, based on what happened to me, to carefully monitor for depression. I did not and it came on fairly quickly. Am treating it now, but wish I would have started that part sooner.

If there is a cancer group in your area check them out, most are very helpful.

It will be a long and bumpy ride but worth it as there really is light at the end of the tunnel. I could not have continued working, but I am almost 30 years older than your husband. Keep in touch on here, it is a fantastic place. Wishing you and yours the best.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Your best source of information is going to be on this site (see the superthread at the top of the forums) and the Oral Cancer Foundation www.oralcancerfoundation.org   Looking all over the Internet will just bring up dated and scary information.  However, with that said I did the same thing :) until I figured out some articles were five years + old.

I wish too I could tell you it will not be so bad, but the truth is the treatments are brutal (for most, remember not all people respond the same) but I only say that so you can be prepared for the worst, but fingers crossed for the best.  Better to cut the board too long than too short, right?

My taste buds were shot within 3 weeks of radiation, my neck (see my picture on my expressions page) was pretty burned -on the outside) towards the end of rads.  I had a pretty rough response to the chemo I was getting and I was not able to work during treatments. I too had my feeding tube the first week my treatments began.  I still lost 70lbs in treatment.  I kept my feeding tube for 7 months.

Some on here worked through treatments.  Some did not have any severed affects from the chemo or rads.

The bottom line is your husband will come out on the other end well and the treatments are needed to save his life (without a miracle) and give him many more years with you.  In the end it will all be worth it.

Tell your husband we are with him and you as you both take this journey, this truly is a marathon and not a sprint, remember that.

Whispered a prayer that he has minimum side affects and that you both have strength as you go through this.

Best,

 

Tim

 

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

Sorry you need to join this club, but you have found an excellent place to get information and support!  I also had 35 radiation treatments, and 6 chemo treatments....with the port and the PEG tube put in before I started.

Your husband is going to lose his saliva and sense of taste....nobody seems able to escape those side effects...it's part and parcel of radiation treatments...and we all seem to lose them in the first 2 weeks.   For possible mouth sores, tho....salt and soda rinses help (1 teasp of each to a quart of water).....also, you might ask the Oncologist about MuGard (it is a preventative and worked very well for me and several other on here).  I never needed to use my PEG tube during radiation at all....but did need it for the last 3 chemo treatments.

For rad burns on the neck, many people used Aquifor.....it was too greasy for me, but my rad doc suggested Calendula cream and Aloe 99....I used them both everyday, and they worked well. 

The keys to feeling the best that he can are hydration and nurtrition......drink lots and lots and lots of water....and get enough calories in per day. 

Stick close to this board as questions come up...there is always someone here who will answer. 

p

PS...stay away from Google....that is a one way ticket to scaring yourself to death....best to ask those who have gotten thru treatment and gone on with their lives.  

 

Laralyn's picture
Laralyn
Posts: 448
Joined: Apr 2012

I want to second the recommendation for Mugard. Look into it ASAP: its most effective BEFORE the mouth sores develop so try to get your husband on it this week, if you can! The website has a form your doctor can fax to the company and if your insurance doesn't cover it, they may help you meet the out of pocket cost.

I had a similar diagnosis but with lower dose, weekly cisplatin rather than the larger doses every three weeks. It's true that there's no avoiding the side effects... but it's also true that everyone's experience is different, and the younger the patient is the better the treatments are "tolerated." I hate that word but it's an honest one because the treatments aren't that risky so it's just a matter of settling in and waiting it out. It's not an easy road but once you're done, it all starts to fall into perspective and you can recognize that 7 weeks is a short amount of time compared to the time you're potentially gaining for the rest of your life. :-)

Don't hesitate to come here and ask questions. Whatever comes up during and after treatments, there's probably someone here who experienced it and is glad to help! That goes for both you and your husband--there are many caregivers on here and those of us who were patients are always eager to say THANK YOU to the caregivers who help us patients along the way!

Dr.Ed
Posts: 22
Joined: Jan 2013

Most have us have been thru the same basic treatment and therefore the same basic side effect picture (though everyone is different and the time for healing for everyone is a little different). i was diagnosed stage IV of the tongue, throat and tonsil.It was HPV which my onc. said was the best thing I had going for me. The treatment was tough, but seems to be pretty darn effective, so you and you husband can expect some difficult and maybe even scary times BUT the time will pass and things will get better. It was a big shock for me too and it still feels like an unreal situation,but I've been lucky enough to regain a pretty normal life. Well best to you and your husband, and make sure you get support and take care of yourself...Ed

CivilMatt's picture
CivilMatt
Posts: 2965
Joined: May 2012

Hetal,

 

Welcome to the H&N forum, pull up your recliner and stay awhile.

 

Tell me is the “24-hour water fasting” something that was recommended by your doctor?  I never heard of it, but I drank enough water to qualify.

 

One way to prevent more harm to his mouth is turn off the rads, but that isn’t the best choice.  More than likely the side effects of rads will be short lived, but the benefits of having rads will be a long life.

 

I can not recommend your husband working since I don’t know what he does.   Maybe if he was a pilot I could endorse working (just kidding).  Since I took a Lorazapam every day I wore the mask I slept all afternoon (no work for me)

 

Sounds like he is doing well, keep the seatbelt on a little longer as it might get rough.

 

Best,

 

Matt

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

My husband had oropharyngeal SCC HPV+ that was diagnosed when he was 38. He worked throughout his treatment (6 chemo, 35 rads) BUT he works at home so he did not have to go into an office. I think if he'd had to commute somewhere it would have been hard to keep working. So it's entirely possible to keep working but it depends on the circumstances.

I think the best thing to do is take it day by day. Things can change quickly so while he's feeling ok one day, he's feeling like crap the next. I too went to google determined to find things I could do for him like diet, supplements, whatever. I had all these ideas for meals that would be easy for him to eat. That all went right out the window when he was unable to eat anything by mouth and was dependent on the PEG. So much of this is out of your control.

Hang in there. The treatment is rough, there's no getting around it, but it's doable and he'll be ok.

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

My husband had oropharyngeal SCC HPV+ that was diagnosed when he was 38. He worked throughout his treatment (6 chemo, 35 rads) BUT he works at home so he did not have to go into an office. I think if he'd had to commute somewhere it would have been hard to keep working. So it's entirely possible to keep working but it depends on the circumstances.

I think the best thing to do is take it day by day. Things can change quickly so while he's feeling ok one day, he's feeling like crap the next. I too went to google determined to find things I could do for him like diet, supplements, whatever. I had all these ideas for meals that would be easy for him to eat. That all went right out the window when he was unable to eat anything by mouth and was dependent on the PEG. So much of this is out of your control.

Hang in there. The treatment is rough, there's no getting around it, but it's doable and he'll be ok.

hsnmp1978
Posts: 44
Joined: Feb 2013

Hello Everyone,

First thank you so much for all the information and support you all provided....second I don’t know how to add new comment to each of you so I will try to give more information here.

Water fasting is ongoing research at Mayo clinic and I found many people have successes with this. "Water fasting" prevent chemotherapy side effects may be not all but some and if you Googel it you will find lots of articles on it. My husband did fasting 24 hours before chemo therapy and 12 hours after (can’t do more) but I think it worked he felt fine and did not had any vomiting or tiredness and he also had hydration therapy for next there day after that.

My husband work as warehouse manager but it’s not hard work and unfortunately can’t work from home.

Yesterday he can’t eat during dinner so I had to make some milkshake for him. It’s getting harder and harder each day to eat for him.

hsnmp1978
Posts: 44
Joined: Feb 2013

My husband just finished his 2nd week of RED and his skin on his neck start to look little radish. He is applying aloe vera 98% twice a day. Is there anything we can do more??

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

this post mentions aloe vera like you as well as other natural and pharma products.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=161654#Post161654

 

good luck. 

don

http://beatdown.cognacom.com (personal journal)

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Some have tried Aloe, others AquaPhor, still others with more damage Silvadene...

I tried Aloe, but had a reaction to Amifostine the same day, but didn't realize it was from the latter until later..., didn't try the aloe again, LOL.

Aquaphor was way too thick and greasy for me...

Wasn't bad enough for the Silvadene...

My best solution just ended up being warm/hot showers...dry skif sloughing off.

But I never had sever urns, more like bad sunburns, dry dark peeling skin.

JG

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

A tube of Medline Remedy Skin Repair Cream with Olivamine was given to my son by the Radiation Onc team at the very beginning of treatments and told to slather his entire neck with it frequently every day.  My son faithfully applied the cream every 3 to 4 hours everyday starting from the time he woke up each morning until just before he went to bed each night beginning with his first day of radiation. He did apply it before every Rad session. At the end of the 7 weeks of rads (35 total), the skin on his neck looked like he only had a mild sunburn (just slightly reddened) and did not have any ulceration nor did it cause him any surface discomfort.   As a caregiver, I was amazed at how well this cream protected the exterior surface of the skin that was in the direct focus of the radiation.  After using half of the original tube supplied by the Rad Onc, I ordered several more through Amazon.com.  It is a good idea to have enough on hand to avoid running out during treatment.   It comes in various sizes including a large 32 oz pump bottle.  The smaller tube is convenient for carrying with you when you need to be away from home so that you don't wait too long between applications.  It has a distinctive orangey/peachy fragrance ... reminds me of dreamsicle and is not greasy. 

Here is a link to the mfg website:  http://www.medline.com/wound-skin-care/remedy/skin-repair-cream/

Aussieuke's picture
Aussieuke
Posts: 6
Joined: Sep 2012

Just dropped into the site and am now on the beginning of month 3 after finishing rads plus chemo.

I agree with most of what the other contributors have said .I have undergone changes nearly every week to two weeks ,usually just after seeing one of the specialists and saying how fine I feel.Taste went out the window early but sense of smell stayed .Almost hypersensative, with drives to try old tastes only to find them bland and hard to swallow because of saliva deficiency.If pain is a problem do not deny the offer of pain killers no matter what the type ,knowing that they are temporary only and can be disgarded as things improve.It makes for easier recovery and better sleeps.The body will wake him when mucus collects in the back of the throat and occasionally the resulting rejection can be a bit of a wake me up.If he is not fitted with a 'peg' then eating is going to be a challange,not impossible ,but challenging at least.

Keeping a positive work ethic is good but the body does need time to heal so there will come a time when he will have stay home and just rest.He may have to because of the different stages as they present them selves and the support to give him is that it is not a a disgrace or shurking of responsibility in not being able to continue providing for the family.It is a time for healing and the body needs to focus on that work not the stress of employement etc.

Milkshakes are good as are Sustegen(high fat) drinks with honey added.Need to keep energy intake up as with resting and recovery some muscle loss will occur. Motivation and gentle core exercise if he feels like it is good but the rads keep working for some time after last session, so the body needs to use all the food to rebuild damaged areas. Just plain milk stays longer in the throat than water(when dry mouth /throat happens) and stay away from high acid drinks like fruit juices,they can cause pain. Diced fruit in syrup can be soothing but again be carefull as syrup may irritate if used too often .Full cream icecream(bland in taste it will be) is ok also,again in moderation and mouth cleaning may be required as these foods will contribute to every 'nasty' that likes a persons mouth to grow in.

As far as recovery goes, I have had to tell myself often that each day can feel like a week and each week like a month as changes take place,some good ,some not so good.We have a saying 'downunder' 'one step at a time' and eventually you will reach your goal.

Just hit by the 'tukey neck syndrome' so ther's another challenge to overcome,ho hum! one step a a time.Good luck.

Bit of a mish mash ,hope it helps.

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

Sounds like you made it through treatment with a positive attitude, and are keeping it up for the recovery time! 

p

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I didn't have to go through chemo but did 30 radiation treatments 6 stages 2 zaps a piece and one station 1 zap I remeber it like it was yesterday but it was exactly 3 years yesterday when I started it. I started on a Wednesday and by Friday I was ready to call it quits. I drove myself 74 miles each way everyday for thjis life saving experience and am very glad I did. My wife has never felt comfortable driving outside of our county so she did make her presence known by waking me up every so often on the PA Turnpike. That part I would never do again. I agree with everyone elses comments thyat it all boils down to individual side affects. One thing I want to add is don't be afraid to let the doctor know all of your husbands side effects. I went to the Hospital at the University of Penn and there was a nurses station in the hallway to the readiation rooms and they were more than helpful everytime I had an issue. Your husband will lose his taste for ceratin foods which could turn out to be some of his favorites. If this happens tell him to avoid them because if he forces himself he will end up hating them and after his taste comes back that particular food will end up on the ne way list. I am a big coffee drinker and by week 2 I couldn't even stand to smell it brewing and didn't even think about trying it until three months after I completed my radiation. They told me what I didn't gain back by a year after radiation chances are I lost forever. I still recovered more taste and more of my voice more than 2 years later. Point being everyone is different and what you read from our experiences can be as different as personalities.

It won't be easy but I assure you it is worth it. After my third day of radiation and I wanted to call it quits, my Radiologist and the staff at the hospital got me through the remaining 27. I  still can't believe I went through it all but I did and would do again if I had to.

hsnmp1978
Posts: 44
Joined: Feb 2013

Hello everyone,

weekend was great My husband had his first acupuncture therapy and he felt more saliva in his mouth all weekend log and he still have saliva in his mouth so that’s great the sad part is he already have mouth sores and it's hard to eat for him. We started aloe vera juice and l-glutamine powder (one spoon with juice) and it might be helping him little. I talk to his doctor about l-glutamine and he has no idea what is it for!!

My husband has little bit cold so I am not sure from what?

Any suggestions please!!

Thanks,

Hetal

 

PG14531
Posts: 1
Joined: Apr 2013

My friend was diagnosed with HPV Origin Throat Cancer stage4 in January. He is almost done with his radiation and chemo. It has been difficult like all of you have mentioned, but I keep telling him that h'es "almost done"...light at the end of the tunnel! I am concerned about something, though. Before he found out that his cancer was HPV origin, he was told it was from daily smoking of cigars and excessive daily drinking. He has also smoked pot for 30+ years almost daily. During the beginning of his treatments, he continued to smoke pot to relieve the discomfort, pain, help him relax and eat. After a few treatments, his mouth and throat were too sore to smoke pot. My question is....After he's recouperated, is pot smoking going to be dangerous for him? I certainly think it will, but can't find any information to support that so I can pass it on to him. I hope he realizes that the pot is unfiltered and that he also doesn't go back to cigars and alcohol.  Too early to tell. I appreciate any info anyone has.

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

and I'm sorry to tell you, but since your friend is a smoker, whether he is HPV positive or not, his survival curve is that of a smoker, not that of an HPV-induced cancer.  Smoke is smoke.  And the oncogenes that are involved in smoking-related throat cancer are stimulated by it, whether it comes from tobacco, marijuana, or other sources.  So if he continues to smoke anything, and if he continues to drink, he's dramatically increasing his odds of a second primary.  That would be unfortunate,  being cured now, then  having to do it all over again.....

Why don't you post this question as an entirely new thread?  It will get more attention that way.  Buried down here as it is, it is hard for people to find.

 

best

 

Pat

 

debbiejeanne's picture
debbiejeanne
Posts: 2436
Joined: Jan 2010

smoking of any kind and drinking will definitely increase the chances of the cancer coming back.  i smoked aftter my 35 rad treamnts and my cancer was back in 16 months.  i would definitely try to talk your friend into quitting both the drinking and the smoking as both can be causes of throat cancer.  i wish you and your friend the best of luck and will put you both in my prayers.

God bless,

debbiejeanne

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

Maintain excellent oral hygiene - flossing, brushing teeth, gums and tongue, Biotiene and baking soda/saline swishes, and fluoride treatments. I didn't have the feeding tube put in and I think it was a good decision. My taste buds rebounded to near normal or possibly 100% even, within the first month after treatment ended. My saliva is taking a little longer, but I have seen good signs there and am optimistic about it as are the doctors.

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