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HPV+ OC starting treatment on Friday #198671
07-09-2019 04:18 PM
07-09-2019 04:18 PM
Joined: Jul 2019
Posts: 6
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EBH Offline OP
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EBH  Offline OP
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Joined: Jul 2019
Posts: 6
Hello, and thank you to everyone who has offered advice and words of encouragement when it comes to OC. My husband (age 49) was diagnosed with HPV+ cancer on his tonsil, soft palate and a few "floaters" in his lymph nodes. He was diagnosed as stage 2 about 2 1/2 weeks ago. We begin radiation and chemo this coming Friday, July 12. Thankfully, our two children are away at summer camp for the next 10 days, so they are not having to see/feel all of the emotions leading up to his treatment. My husband's chemo will be three times total every three weeks. Radiation is scheduled every weekday for the next 7 weeks. We are still in shock between our tears, but know this is a battle that must be fought and won. All of your advice as we begin this scary process is so appreciated. I have pages of notes on how to keep his intake and hydration up, as well as suggestions on how to deal with mouth sores, a swollen throat and thick mucus. We are desperately trying to avoid the feeding tube! I am sure I will need to refer back to this forum often for advice and encouragement as his treatment progresses. Being a young, healthy family, this is the very last place we thought we would be this summer. We are both looking forward to being on the other side, but know that it will be a long and hard road getting there. Thank you to everyone for the support in advance :-)

Re: HPV+ OC starting treatment on Friday [Re: EBH] #198672
07-09-2019 05:37 PM
07-09-2019 05:37 PM
Joined: Jun 2007
Posts: 10,385
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 10,385
PA
Welcome to OCF, EBH! Im very glad you and your husband are part of our online family! We will help you both as much as possible with info and support.

After reading posts here and also important info from the main OCF site Im sure you are learning how complex this disease is along with treatments and the recovery phases can be difficult for many. I cant stress enough about how vitally important your husbands intake will become. The better the intake on a daily basis the easier everything will be. Every single day he will need at least 2500 calories and 48-64 oz of water.... every single day!!! Right now as he prepares to begin treatments, he should be eating all his favorite foods, desserts too. He does NOT want to go into this with cravings as his sense of taste and ability to eat are likely to be temporarily affected.

Im guessing your husband will be given cisplatin for chemo. If he notices any difference in his hearing he must tell his doc right away!!! Make certain he doesnt downplay it thinking its not important with so man y other things going on. Cisplatin can be very hard on the kidneys and also is known to cause some high frequency hearing loss thats permanent. Push the fluids the day before, day of and day after getting chemo. Thats very important in helping to flush that poison out of his body. He probably will be given extra fluids along with the chemo but he still should push fluids around the chemo days to help avoid bigger problems later. If theres any hearing changes do NOT let your husband get another dose of the same type of chemo. It can be changed to something else like carboplatin. If nausea is a problem from the chemo (usually hits about a week after the dose of chemo is given) take anti-nausea meds around the clock even if he thinks its ok to skip a dose overnight... dont do it!!!! Once that nausea hits, it hits hard and its almost impossible to get ahead of it anytime soon. By taking them around the clock, anti-nausea meds can help avoid some very bad days/nights of being in the bathroom hanging onto the toilet. I prefer zofran which works best for me but others have like compazine. For me, compazine caused restless leg syndrome which was absolutely horrible!!! I was like a zombie pacing back and forth unable to sit down to rest. This happened not long after I had started seeing tv ads for restless leg syndrome and foolishly thought it wasnt real. I quickly learned there really was such a thing and I was exhausted from pacing.

Theres going to be many people who ask what they can do when they hear of your husbands illness. Dont be surprised if you dont hear all kinds of stories like from your neighbors sisters best friends cousin who had XYZ cancer and used some obscure item against conventional treatments. People who relay those stories are just trying to be helpful but they do not have the info that really will help. Oral cancer for some can be difficult to get thru with it affecting so many important things like eating, drinking, talking, kissing children goodnight, etc. Its NOT like other cancers!!! I had never known such a thing existed until I was diagnosed with it the first time in 2007. Anyone who offers help let them know when the times comes you will let them know what they can do take down all their contact info. Having children at home means there really will be a million things friends and relatives can do to help get your family thru this rough patch. There may be times where grocery shopping just isnt happening and someone could pick up a few items and drop them off to help, a play date for the kids or taking them out to the movies, picking up prescriptions, walking the dog, mowing the lawn, taking out the trash, driving your husband back and forth to treatments, getting kids hair cuts are all just a few things that can add up to be a HUGE relief when everyone is focused on getting your husband thru treatments, into recovery phase and back on his feet.

If your husband is uncomfortable make sure that is relayed to his medical team. Many cancer patients take medications to help with pain. Its not unusual to take a couple different meds while going thru treatments and starting the recovery phase. Just make certain your husband always speaks up and talks freely to his medical team. They're there for him and need to be aware of every single thing he has going on. Before taking over the counter medicine, vitamins and any herbal items make sure its run past the medical team. Some vitamins and supplements can negatively affect treatments. Many oral cancer (OC) patients struggle with the mental aspect of being recently diagnosed as well as accepting all the upcoming changes and challenges. It definitely can be alot to handle! Many OC patients and their caregivers too need some help to get thru a few rough weeks/months. Often patients resist seeking a therapist to speak with but it really can be very helpful. Theres a million other things I could go into but I think Ive already given you quite alot to think about. Feel free to ask questions. We will do our best to help you both get thru whatever you are facing. As a caregiver you have a difficult job! Dont forget to take some time just for you once in a while to help clear your head.

Hang in there! We're in your corner smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: HPV+ OC starting treatment on Friday [Re: ChristineB] #198681
07-10-2019 10:32 AM
07-10-2019 10:32 AM
Joined: Jul 2019
Posts: 6
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EBH Offline OP
Member
EBH  Offline OP
Member
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Joined: Jul 2019
Posts: 6
Thank you for all of your information Christine. We have 48 hours to go before treatment starts. The anxiety of it all is unbearable, but we are committed in following all directions to a "T" to get through this as smoothly as possible. Troy is already loading up on calories and water and understands the importance of his daily intake each and every day. Unfortunately, he lost 12 pounds over the last couple of weeks due to stress. I am doing my best to get those pounds and then some back on him! We are also meeting with a swallow specialist on Friday during treatment. I understand they can really help with mouth exercises, talking and of course swallowing. I do have a couple of questions for you based on my research:

1. Where do you get "Magic Mouthwash"? Is it a prescription?
2. Did you need a suction machine to help with the mucus? If so was this rented through the hospital?
3. Did you take anti-nausea medicine throughout your entire treatment? Or just the days surrounding when you felt nauseous?
4. Did you take cannibas throughout treatment to help with pain and nausea? We are hoping to avoid opioids as long as possible.

Thank you again Christine for all of your help. We are both terrified on what is ahead, but having you and the others in this forum in our corner helps ease some of the anxiety.

All the best,
Ellen

Re: HPV+ OC starting treatment on Friday [Re: EBH] #198685
07-11-2019 08:31 AM
07-11-2019 08:31 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
I'll jump in and say, take the nausea meds BEFORE they are needed, and keep them going, if nausea has been an issue before. I had lower-dose chemo (spaced differently), so it wasn't a problem for me ... which is wild, because I usually get nauseated with everything. But it's one of those things you have to stop before they start, and keep treating for a few days after it would have passed, to keep it at bay. Same for pain, if there are predictable pain times. (And never be afraid to ask for help with pain ... you do what you have to, to get through this, and then wean off later. Radiation is like nothing else on this earth, it is so weird.)

Magic Mouthwash is a catch-all name for various prescriptions ... different combinations that have lidocaine, and a few other ingredients. You can swish and spit, or some swish and swallow, to numb the mouth and throat long enough to be able to take a few bites. When it works, it's worth its weight in gold. But since it coats, it wears off as you eat ... so sometimes needs refreshing during a meal.

Hope Christine or somebody can come back and give you better answers, and answer your other questions too!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: HPV+ OC starting treatment on Friday [Re: EBH] #198686
07-11-2019 10:01 AM
07-11-2019 10:01 AM
Joined: Jun 2007
Posts: 10,385
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,385
PA
You will see many posts with scary info on our public forum. This is meant to be useful for others to avoid the same pitfalls not meant to cause anyone concern. Everybodys different (as you will read over and over here) and will experience everything in their own unique way. Im being completely honest with you so you know what to watch out for.

Its next to impossible to put pounds back on once they have been lost from cancer. The body is working OT fighting the cancer and trying to repair what damage has already been done which burns calories at a much faster rate. This is why its so important to immediately up the patients daily caloric intake and keep it at the higher intake until the patient hits the first year post rads. Daily taking in at least 2500 calories sounds high to most people but thats the lowest most patients should take in. Even if your husband began taking in say 3500 or 4000 daily calories its doubtful he would gain those 12 pounds back this month. Many days during rads, I took in over 5000 calories and still was struggling to stop my weight loss which was sapping my muscles and strength with every ounce I lost. Many patients incorrectly see their weight loss as an easy way to lose a few extra pounds and its not a big deal... wrong!!!!. No matter what the weight, doctors prefer their patients weight to remain steady. Ive nagged thousands of OC patients and caregivers about intake. Its vitally important to push the daily intake every single day!!! Patients frequently and wrongly think playing make up will be ok....n its NOT!!!
When a patient takes in only 3 instead of the 4 cans they're told they need daily the next day they should do 5 which seems wayyyy too much. Tomorrow I'll do better never happens and the patient begins their downward spiral which is very VERY difficult to turn around. Right now its important your husband eats all his favorite foods as much as possible as it could be months before he is able to enjoy those favorite foods again. His sense of taste will change, many feel like it takes forever to return to its pre-cancer ability. Knowing they will have trouble with food not tasting like it should and the bad taste makes it difficult (for some its impossible) to eat which is why I stress eat now!!! Most patients do not notice any major eating changes until after the 2nd or 3rd week but some unfortunate patients will struggle right from the very beginning. Hoping your husband is affected later rather than sooner but you just never know! Rads is progressive, the further a patient goes thru treatments, the harder it becomes and the more it affects the patient. Once completing rads, it still continues to work often patients feel their absolute worst the last week of rads and first 2-3 weeks after finishing. Meeting those numbers on a daily basis will help make everything easier. Focus on whats controllable... intake, pain meds, attitude, patients along with their caregivers must always do their very best, every single day!!!

Before your husband begins treatments Im positive he is a nervous wreck, everyone starting anything new is always fearful of the unknown. As his wife and caregiver, you are worried as well which causes extra stress which is counter-productive and makes everything harder. As you mentioned all the extra stress is also causing your husband to drop even more weight. Im so relieved to read both your and your husbands determination to follow everything the doc says and how you are absorbing all the info you can to help your husband! Just being so compliant shows me you each are putting your best efforts into everything which should be a huge advantage to how easily your husband gets thru everything.

One thing I learned over the years of dealing with my seemingly never ending physical issues during treatments, recovery and afterwards was to stop procrastinating as much as possible. It wasnt until I was completely convinced I was not going to survive my third round of OC, that everything I had gone thru in the previous 3 years didnt matter to my family as much as how I chose to spend every single one of my remaining days. Thats when I was determined to make the most memories with my teenaged children as possible. We did something every single day and enjoyed each others company thru those 2+ months of my count down to my life changing surgery. As a single mom, we talked about very important life lessons and went out on many adventures almost daily. It was terribly difficult for me trying to prepare my children to go on without me while sparing them the serious details of my third diagnosis in 3 years this time as Stage IV. This is in no a suggestion this is related to what your husband is going thru. Im discussing it to help you to spend this time making memories together. Having children Im sure its not often you have this opportunity to spend quality one on one time together as you are right now. Go out and do everything you ever wanted to do together trying to focus on everything positive, making some great lifelong memories of making the most of every day smile . Years from now you both will look back on this time and smile when remembering everything you did together.

For your questions....

1. Magic Mouthwash (MM) is available thru a doctors prescription. It can be made of a few different combos. The MM I had was maalox, benedryl and lidocain. Many have nystatin added to help with thrush which is common for OC patients to get. Its a temporary numbing liquid (only lasts 20-30, maybe 40 minutes) the patient swishes and spits out... do NOT swallow it!!! If swallowed it can cause other serious issues. Ask your husbands doc about this and see if they can write him a script with at least 3 refills. Not all pharmacies will make this so dont be surprised if you go to a couple before finding the right one to make it. I seem to remember something about a compounding pharmacy being the right one??? If your husband needs this it probably wouldnt be til after the 3rd or 4th week. Water piks are very helpful as well.

2. Portable suction machine is available by prescription from a medical supply company on a temporary basis. Its something some patients use towards the very end of their treatments, but more will benefit from using it the first 4-6 weeks of recovery until the thick gunky phlegm phase ends and the dry mouth phase begins.

3. Anti-nausea meds should already be something your husband has prescriptions for or you can pick up them up from the pharmacy so you have them ready if/when it hits. No, I did not take zofran for anti-nausea until about 10 days after my first chemo when it hit me... HARD!!! Another minor thing you should prepare for, chemo day is always a very long day spent at the hospital. They give extra fluids and chemo thru and IV where patients are lined up in recliners with tvs, caregivers with them, some playing cards, many patients sleep thru it. If you havent seen the chemo lab yet, it is an eye opening moment the first time someone walks into one. Your husband still needs to drink extra water the day before, of and after chemo to help flush the poison out of his system. Back to the anti-nausea... I suggest zofran for anti-nausea as to me, it is the best one that has and continues to work even now 12 years later. Once the first twinges of stomach/digestion problems begin, I suggest your husband immediately begin taking the anti-nausea meds continuing around the clock to avoid being so sick. You must stress to your husband to immediately convey any and all changes he has even something he considers no big deal... it may be very important to his medical team. When nauseous, every single thing your husband brings up must be replaced, it really is very difficult to meet the daily minimums when unable to get ahead of the nausea. This can quickly turn into a vicious cycle of feeling too sick to even attempt to eat or drink, unable to keep even a couple sips of water and medications down and being unable to replace what has been thrown up. Dehydration is horrible!!! When I went thru it, I was scared to death! I thought I was in the beginning stages of dying and completely unprepared for this to happen. You do NOT want your husband to reach that point where he must take anti-nausea meds by suppository due to the nausea being so bad. To help avoid nausea, sleep inclined with your head raised, avoid moving around much after eating, or drinking alot and pay special attention to every single thing that seems different in how you normally feel.

4. Before I answer this Id like to briefly explain a few things. Laws vary greatly from state to state regarding medical usage. The past few years things have changed dramatically where many states have made tremendous changes in their usage laws. Each state has their own legal fine print of whats ok and what isnt on that subject. The states who were the frontrunners of the legalization have their general public being more accepting than those living in states who have recently made or have yet to make any legal changes. Many people in the US have strong opinions and remain firm in their personal beliefs, no matter where they reside. What Im getting at is OCF has rules to ensure this pubic forum always stays civil, our members are encouraged to avoid topics that are religious, political, false claims with unscientifically proven data to support it (quackwatch topics), and/or un-diverse to name just a few. With this topic being now a political issue along with being something without scientific data to support it is best discussed off the forum thru email or private messaging (PM). Living in PA where the laws have only recently been changed and being 12 years post rads, I do not have first hand knowledge of medical usage. Over the years, this and a few other topics have become a battlefield with many taking sides and posts becoming heated, some were downright nasty which should NEVER happen here! We're a very different award winning organization that is devoted to helping everyone affected by OC as much as possible with guaranteed correct and up to date medical info and support. If you have further questions about this please send me a PM and I'll be happy to help.

If you and your husband are overwhelmed, its ok!!! Most cancer patients are in a state of shock when first diagnosed and forced to face their own mortality face to face and an unknown future. Many will need anxiety meds on a temporary basis to help them deal with all the mental baggage they're carrying on their shoulders. Talking to a therapist or medical professional about their fears is a huge help for most but many patients are unable to bring themselves to discuss something so personal with a stranger. For those who a reluctant to open up, family therapy can help as everyone is involved as a whole. Whatever path you and your husband decide about the overwhelming stress and fears newly diagnosed OC patients and caregivers are on, we're here to help make everything is easy as possible thru our first-hand knowledge. As a caregiver your job is especially difficult so please help yourself and make time once in a while just for you. Its always surprising to new caregivers when besides everything else they're doing for their patient and family, they do something nice for themselves how much they feel like the weight of the world is off their shoulders. Its ok to lean on us when you need to. Just remember... today is an entire day you and your husband can go out and make whatever memories you want smile

Wishing you and your husband all the very best with everything!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: HPV+ OC starting treatment on Friday [Re: ChristineB] #198688
07-11-2019 03:11 PM
07-11-2019 03:11 PM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
I can add another note on the cannabis, as far as laws go ... if you've got a federal job, especially one with a security clearance, and you happen to want to keep it ... it's a no-go. Whatever the state laws may say, federal law trumps in those cases, alas. On the other hand, it's his health and his choice ... but it IS something to be aware of. (I know some folks having to make these sorts of decisions, and it's not easy.)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: HPV+ OC starting treatment on Friday [Re: KristenS] #198690
07-11-2019 06:30 PM
07-11-2019 06:30 PM
Joined: Jul 2019
Posts: 6
E
EBH Offline OP
Member
EBH  Offline OP
Member
E

Joined: Jul 2019
Posts: 6
Thank you both for your help and information. I hear what you are saying about the sensitivity of medical cannibus. We live in Colorado, so cannibus seems to be pretty common in treating nausea, pain, swelling, etc. In speaking with our pharmacist she felt it might offer a good alternative to taking so many pills. I will definitely run it by our oncology team tomorrow to make sure it doesn't interfere with his treatment.

We are down to our last evening before 7 weeks of treatment. I am sure I will have more questions as we begin this journey and thank you all in advance for your help and support. For now....I am off to enjoy a Colorado sunset on this beautiful summer evening. Thank you again!


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