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Joined: Jul 2019
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hi all, i have the HPV oral cancer. I am in treatment with simultaneous treatment of chemo 7 mondays in a row and radiation ever day for the same seven weeks,

i have had a rough cycle this week. wed and thurs are the worst from the nausea and constipation from the cisplatin. It seems to be getting better each week. Does it get better as I go? i know the radiation gets tougher.

question no2: I talked to a woman yesterday who lives in my building who has a very big speech impediment and sunken cheeks who told me in almost barely understandable speech that she had survived "throat cancer" and had done chemo and radiation but this was what she was left with. It looks healed so probably its not something recently done, and I did not ask her if she had the HPV cancer type or what stage it was then. Anyway, how many people get these new treatments and are massively handicapped after it?
obviously I am concerned about the likelihood i might see that.
If something like a speech impediment occurs, how successful is reconstruction surgery?
anyone had it who can speak on relative cost and if insurance sees that as medically necessary? I recently learned the hard way that anthem and other majors dont cover the less invasive proton therapy and might switch to a company like humana that does. Anthem does cover it for employees and for insured at age 21 and 65 but not late 50s when the cancer occurs. I am thinking of open enrollment coming soon.


Tom from VA Beach, VA Orophalangeal cancer treatment july/ aug 2019 chemo and radiation 7 weeks. Tumor under tongue spread to lymph nodes.
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yesterday the radiation machine was broken all day and my last radiation of the week was cancelled. It;s better because I get an extra day this weekend to recover and let the mouth lesions heal. I am rinsing with salt/ baking soda mix and then doing an "oil pulling," with very yucky tasting liquified coconut oil. Seems to help.


Tom from VA Beach, VA Orophalangeal cancer treatment july/ aug 2019 chemo and radiation 7 weeks. Tumor under tongue spread to lymph nodes.
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Welcome Tom!

I’ll try to answer your questions as best I could. Christine, our administrator, and others, may be on here soon to offer much needed advise better than I could say!

Having HPV cancer, assuming it’s in the oropharynx like mone is a good thing!

The chemoradiation you’re on is very common, pretty much the protocol for except for the slightly harsher 3 bah infusion of cisplatin.

I think you’re doing pretty good, better than myself, so hang there!

As far as the nausea and constipation, are you taking medications for that? I did! There’s nothing wrong with taking meds to get through this’

It usually doesn’t get better, I hate to say? And it may take just as long to partially recover from radiation, Chemo may be out of your body sooner, but it can have its own side effects like hearing loss, vision, kidney function, so tell your doctor at the first sign of difficulty. They’ll take your blood count every week so certain things are monitored that way. Drink plenty of water to help eliminate the waste.

Everyone is different, so you may not suffer long term side effects. It depends on many factors such as you health, age, type of chemo, radiation, how long, dosage, etc. everyone is different, and I never expected to be knock out from one week induction chemo! They may have you see a speech and swallow therapost who are great with the different exercises for swallowing.

Be careful switching insurance right now. I recently was dropped from Medicare supplement plan, and had no coverage for two months! Doing Protons, which I did, is doubtful right now as you already began radiation. The can’t stop! I know you mentioned having off since the machine was out, but anything longer is detrimental, as the tumor may grow on the radiation cycle.

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Administrator, Director of Patient Support Services
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Welcome to OCF, Tom! You have found a great resource with info and support to help get you thru everything you are currently facing with oral cancer (OC).

Before I answer your questions, please understand everyone is different and no two patients are ever the same. What one patient struggles with may not bother someone else who "on paper" appears to be very similar with the same diagnosis. Theres far too many variables even if patients have the exact same tumor location, type, height weight, age, live in the same area, do the same type of employment, have the same family history, same sex, heritage, number of children, medical history, blood type, vaccinations, ethnicity plus many, many more things that combine to make each person the unique individual they are. Everyone will respond to medications, treatments, procedures, etc in their own unique way.

In answering your questions, I will always be honest with you with my reply weather its positive or what you hoped to hear. Unfortunately treatments do NOT get easier as you go... its just the opposite, it gets more difficult. Radiation treatments get progressively harder the further along you go. Even when the treatments are completed, they continue working where many patients biggest struggles are at the end and first couple weeks after finishing rads.

The very best thing you can do is to focus on what is within your control avoiding the "what if" scenarios. Just like all patients are different, nobody can predict how a patient will respond to treatments. No one knows if one patient will struggle while someone who may or may not have a similar diagnosis seems to sail right thru. Radiation treatments do affect most patients ability to talk. Most patients towards the end of their rads/beginning of recovery have a very sore throat that can make talking or even whispering painful, this is almost always a temporary issue. A long lasting or permanent speech impediment does NOT happen to everyone!!! Unfortunately, after some very difficult surgeries and treatments, some patients have different problems that never go back to what they were before the cancer diagnosis. Many patients who complete their treatments and recovery go back to pick up their regular lives where they left off. Theres always an exception to every rule, sadly some patient do not go back to how they were before diagnosis and will have permanent issues they will need to work on to improve. This could be any number of things, not just a speech problem.

Reconstructive surgeries are NOT necessary for most OC patients who have a speech impediment! When talking about reconstructive surgery, it is normally done to "tweak" or correct something from another surgery, not to change someones speech. Theres thousands of people who live wonderful, fulfilling, full lives who have speech problems. Sometimes its all just how someone views something. To me, Id welcome going thru OC, treatments, recovery even if I ended up with a permanent speech problem as it certainly beats the alternative or not surviving OC! What one person sees as a handicap another sees it as something positive. After enduring the initial diagnosis, treatments (which can be barbaric!), a long hard recovery while learning to overcoming the side effects and other problems that go along with being a cancer patient, most have a much different view of things than when they first started out and were not aware of what they were facing. I guarantee next year this time you will be a much different person with a very different point of view on whats acceptable and what is considered debilitating.

Theres all kinds of specialists who should be available to most OC patients to help them manage the side and after effects of OC and its treatments. Speech pathologists can do miraculous things with patients who have a hard time enunciating words clearly. Nutritionists can help with ideas on how to take in enough calories to avoid weight loss and help yourself to feel as well as possible during treatments. Some patients need anxiety meds and/or talk with a therapist to help them to overcome the debilitating effects a cancer diagnosis brings as well as to avoid becoming depressed which is very common for OC patients.

Since you are already have begun your treatments, every single day you need to take in at the very minimum 2500 calories and 48-64 oz of water.... every single day (until you hit the one year post rads mark). This is the one biggest thing you must focus on, its in your control and will have a gigantic impact on how easily you go thru rads. Doctors prefer a zero weight loss for all patients going thru rads/chemo which can be very difficult when patients sense of taste and swallowing ability begin to be compromised. Make certain you discuss everything with your doc right away! Even something is minor as taking a multivitamin could negatively impact your treatments or cause the chemo to be less effective. Any change in your hearing, kidneys no matter how minor need to be reported ASAP!!!... Permanent hearing and kidney issues can happen with cisplatin. The chemo can be switched to something else usually carboplatin if any issues occur. On chemo days (plus the day before and day after) patients need to drink extra water to flush the poison out of their system. These are the things patients should focus on, what they truly have control over. The "what if" thinking can be upsetting and is counterproductive, its out of the patients control to change or do anything about. All any of us can do is what we have control over ... managing pain and our intake while hopefully deciding to listen to all of the doctors recommendations.

With so many different insurance options available, many here can have all different kinds of coverage. Our members are from all over the world with many in countries where everyone has universal health coverage from birth. What one on the east coast has may not be offered on the west coast, same for states too! Im in PA, here even different counties have different options for health coverage. Some hospitals offer patient assistance programs but sometimes its not automatically offered, patients must ask.

Reading here and on the main OCF site will give you tons of info. Learning more about your illness and treatments will make for a strong advocate. The following link has the main OCF site. Wishing you all the very best with everything!!!

Main OCF Site, Understanding section


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
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holy cow have you done a lot more than I though one person could do. Oh my, that is a story! 10 years till cancer free, the teeth, all the surgeries. Where were you in the detection cycle?

if you would prefer to message that you may. I am so humbled seeing the list of things you endured and hope I can be so pleasant and forthright when a newcomer asks info of me.

I saw the response about the radiation cycle. I'm glad you said that. The lesions sent me to the ER at 5 am. The left rear molar has messed that up and if open my mouth to eat it's bad.
Everytime it connects it's an 8 or 9 painwise. I thank you for the steering my attention to the paitent advocate. I will read that next.

my lesion is so bad i want to stop for some days but I am reminded of the survival rates doing the protocol.

I also am humbled that you did the proton therapy and still had to have the 30 extraction. So, i hope we talk again.

I will also check out your profile. check mine out. tom


Tom from VA Beach, VA Orophalangeal cancer treatment july/ aug 2019 chemo and radiation 7 weeks. Tumor under tongue spread to lymph nodes.
Joined: Jul 2019
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and you too Christine. Wow you are so open with that share. I cannot imagine what YOU have been through. You must think of my thing as a walk in the park. I feel sorry I approached this as Mr. Woe is me around you who have had such experience.

Amazing


Tom from VA Beach, VA Orophalangeal cancer treatment july/ aug 2019 chemo and radiation 7 weeks. Tumor under tongue spread to lymph nodes.
Joined: Mar 2019
Posts: 77
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Hello Tom,

This is Crystal.

I hope you get some relief, somehow, for the dental problem ? What was provided in the emergency department for you?
Unfortunately, I am familiar with that route too... But not for dental pain

As you are finding out now, it takes mental determination and a sense of Purpose , to keep going in Every day to get your treatments. Try to stay strong... Fortify yourself with good diet ( do the best you are able to. Do you have a feeding tube??) And also, I Hope you have supportive people around you.

Virginia Beach is nice!! I visited there years ago.

Crystal


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