Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Steven Zenith #179388 04-16-2014 12:29 PM
Joined: Apr 2014
Posts: 8
Member
OP Offline
Member

Joined: Apr 2014
Posts: 8
In fact, I am happy with the care I have but looking for viable *choices*, not conspiracy theories :-) But I thank you all for your feedback. I have tried medicine by statistics, and can't say that it has been especially effective for me. I am thinking of blood pressure treatment, for example. In addition, my mother died a few years ago of bone cancer and Leukemia, disorders brought on by treatment for breast cancer.

Forgive my caution.

So, I've heard that it is going to be tough but no one has given details. I was told that I can work during the treatment, my work is cerebral (I am finishing a book). What, exactly, do I have to look forward to. Is it going to hurt, and if so how? Am I going to feel queasy, if so, how long will it last? Am I going to have control of my colon? If not, why not?

What do I eat, do I eat? Consuming 2500 calories already sounds a challenge.

I should note that I am 6'2" and 217ibs currently, and apart from this in good health.

Last edited by Steven Zenith; 04-16-2014 12:33 PM.

Steven Ericsson-Zenith, Los Gatos, California.

Diagnosed six months earlier with TMJ Disorder.
In Late March 2014 Diagnosed with Cancer, a 2" tumour at the base of my tongue. Given a CAT scan, MRI and Chest X-Ray at Stanford Medical Center.
Referred to ENT Oncology at Valley Center, Santa Clara.
Biopsy 4/10/2014. Diagnosed with Squamous cell Carcinoma HPV16+
MRI, 4/12
Dental app. 4/17
First meeting with Radiology. 4/23
Dental treatment. 4/23
PET Scan. 4/29
Steven Zenith #179390 04-16-2014 02:31 PM
Joined: May 2013
Posts: 134
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2013
Posts: 134
I wrote and deleted a response because it sounded flippant and that is certainly not how I would want to sound. This Saturday I will be at a SPOHNC meeting with a dozen head/neck survivors, no two of which had the same experience. You can read up on the drug they recommend and ask about it here and some will say they had no issues at all while others were forced to change at some point. I think it's universally agreed that radiation sucks.

My experience: I was a 6'2, 205 "elite level athlete" (the docs words not mine) when I started. I declined PEG tube and port for the duration. Figured I would just stop losing weight at 185. I was 185 for 15 minutes on my way to about 160. I worked for 6 of the 8 weeks of treatment and had to stop while on fentanyl for pain. For the life of me I can't remember how I hurt to describe it to you. That's weird...

That was 3 years ago and I weighed 200 even this morning.

I don't know if ones response to chems is predictable. I'm guessing it's not. I had NO side effects from Cisplatin (other than mild hearing loss) but someone will write in a bit that they had lots of issues. Pretty sure that many will tell you to try and put on a few pounds before you start. Once in the fight, food and WATER are what keep you going. Fall behind and you will know it and it is hard to get caught back up.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Steven Zenith #179391 04-16-2014 04:06 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
As said, and being you asked, no one can tell you everything that will or will not happen. There are common side effects likely to occur, not so common that may occurr, and rare events. It also depends on the type of radiation, the dosage, the fractions, where radiated, if one side only, and or if the salivary glands are spared, which usually are to some extent, the type of chemo, combination of chemo, duration, dosage amount, and speed of infusions, and any underlying medical issues, comorbities, and general health that may matter.

As far as I'm concerned, radiation was no walk in the park, but was nothing compared to my first chemo, and many may underestimate it, I did. I thought nothing could knock me down, and that was my profession not to, and was in pretty good physical condition at 5''9", 245lbs at diagnosis, which weight I would fluctuate from 275 down to 190, from exercise when I wanted (just as not as fast anymore lol). Well, after 5 days of chemo, that was it. I was down for the 10 count and worse! My treatmnt was stopped, and spent 6 months in the hospital, 2 months were in ICU, some on a respirator, tubes in every orface, and then critical care nursing home floor, paralyzed from the waist down, blinded, and left basically die. You name it, I had probably had it, and really am underestimating it. I went from 245lbs, probably more due to the inflammatory process from sepsis, septic shock, and lost over 110lbs in a few weeks going down to 130lbs. I had burns on my face, hands, inside mouth, throat, requiring the burn unit to debride the wounds. All my finger nails, toenails, and hair came off too. It has taken me over 4 years to gain back some weight, now 175, although last summer I went to 200, lost again, and got some strength back, but I'm a shadow of my former self, and after 30 years of working, I had to retire at a young age at 48.

What does this all this mean, nothing. Everyone is different, but I do look into things more now, consider different types of conventional treatments, thier hazards, cross reference any medical conditions, medications, vaccinations with drugs I will be receiving, do some pre-planning, have a plan A, B, and maybe C, so when treatments starts, I know I did my homework, and try to get through each day at a time, and attack any item as they may arise, if I can lol. Does this help, maybe, maybe not, but it does for me, and have no fear of the unknown.

To further add to what others said to get though treatment, although there is much more, is to get adequate nutrition and hydration, have pain, nausea and vomitting controls when needed, have impeccable oral care, apply neck protection creams, and get proper rest.

You will learn more each step of the way, may have more questions, but 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






Steven Zenith #179393 04-16-2014 04:37 PM
Joined: Aug 2012
Posts: 214
Likes: 1
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Aug 2012
Posts: 214
Likes: 1
Welcome, Damn HPV got me 1 1/2 years ago. I too was in great shape, ran lots of 10Ks. As to what you have to look forward too. Everyone is different. Some sail right thru others struggle right out of the gate. Being in good health should help, but rads and cisplatin may not care what shape you are in. I struggled week 1 then weeks 4-12. The two after treatment were down right awful. As you probably heard by now, getting food and water in you is kind of important. It will become your biggest challange. 2500 cals is tough when your healthy, Now you have to do this when you feel like you are swollowing razor blades and there a 50-50 chance it might come right back up and you will have to do it again. Some of us had to get peg tubes because feeding was just that difficult. Every day brings new challages and I spent most of my time (8 hous per day) tring to get food in me.

My advice to people is aways take advantage of the time you have right now to get as much stuff done as you can. I am thinking cars, garage, yard work, home repair. Simple things like taking out the garbage might become difficult. Get help you may need it. Always have a back plan to get your butt to treatment. Put your game face on, you have been drafted, and the best way out is thru the IMRT machine.

The good news 4 weeks post treatment life starts to get better. Stick with us thru treatment, you will be glad you did. Post as often as you like and ask lots of questions. For me it really pulled me thru the rough points.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Hockeydad #179425 04-17-2014 09:54 PM
Joined: May 2013
Posts: 63
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Joined: May 2013
Posts: 63
Sorry you've had to join us but welcome...

I was diagnosed in May 2013 but less than 12 months later have finished treatment and life is pretty much back to normal for me... despite it being undiagnosed for over 6 years (due to a hospital error). I was Stage IVa.

My experiences and from reading these forums is that people react differently. I certainly didn't expect my life to be this normal less than 12 months later.

My thoughts were that I wasn't supposed to have this cancer growing inside of me and I wanted to hit it with everything I could - I was only 39 years old when diagnosed and the mum of 2 young kids and a business owner whose business employed others - I wasn't going to be beaten.

I jumped at the chance to have it all surgically removed (BOT - base of tongue surgery and right neck dissection), and then blast it with chemo (cisplatin) and rads concurrently... just had a follow up CT scan 2 weeks ago and all is clear.

I found surgery the toughest to start with, trouble swallowing, etc but within 2 weeks of that was OK enough. Chemo I suffered permanent hearing loss so didn't finish the whole course but it hasn't affected me too much long term. I've got permanent ringing in my ears but you get use to it. Radiation started off easily and I only lost about 3-4kgs but after the course of radiation finished I lost another 10kgs.. I am still now 13kgs lighter than when I started treatment but I'm now counting that as a benefit (got to look at the positive side of this disease). Definitely the other hardest bit was the very last week of radiation and 2-3 weeks after it had finished. So sore, not being able to eat and hardly even drink but knowing that you had to. I don't think I was generous enough to myself with my pain medication but hindsight is a wonderful thing.

Get lots of people's experiences but try not to be scared by them either. I'm a bit of a control freak so wanted to know the range of experiences of everyone and found comfort in knowing I was in the lower range or higher range of these when I was going through treatment.

My BOT tumour was less than 2cm so yours is larger. Find out with the surgery what effect, if any, it will have on your eating/talking.

Sorry for the book... it's no walk in the park but face it head on, organise support in advance and know that all of us in these forums will also be here for you.


39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads
Steven Zenith #179432 04-18-2014 01:37 AM
Joined: Apr 2014
Posts: 8
Member
OP Offline
Member

Joined: Apr 2014
Posts: 8
My thanks Meli for your positive, detailed, and very helpful response. Yes, my tumour is too large for surgery.

I will not be beaten. I am going to cram to finish my book before the worst of it cuts in. I am rather concerned to hear today that radiation will kill the cells in my jaw bone. Anyone else know anything about this?

I continue to look for viable alternatives. What are the options for chemotherapy? What is Cisplatin?

Last edited by Steven Zenith; 04-18-2014 01:39 AM.

Steven Ericsson-Zenith, Los Gatos, California.

Diagnosed six months earlier with TMJ Disorder.
In Late March 2014 Diagnosed with Cancer, a 2" tumour at the base of my tongue. Given a CAT scan, MRI and Chest X-Ray at Stanford Medical Center.
Referred to ENT Oncology at Valley Center, Santa Clara.
Biopsy 4/10/2014. Diagnosed with Squamous cell Carcinoma HPV16+
MRI, 4/12
Dental app. 4/17
First meeting with Radiology. 4/23
Dental treatment. 4/23
PET Scan. 4/29
Steven Zenith #179433 04-18-2014 04:59 AM
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
Hello Steven - welcome to the family, though I'm sure you would just as soon not have to be here (same for all of us). I'm sure you are also absolutely blown away with the seeming enormity of this new situation; we were too. That's where the forum family comes in; some who have already endured it and come out the other end of the tunnel stick around to help the new guys navigate the maze that you will soon be in.

Please don't consider further any of the alternative treatments out there on Dr Google. Snake oil cures have been around since time began and they don't work any better now than they did then. This oral cancer you have kills people very effectively, it isn't kind, it doesn't heal on it's own. Doctors are what cure it and they use surgery, radiation and chemo. I too have thought what you wrote above about big pharma, BUT when I was diagnosed I didn't waste one second getting my butt to the doctor to get started with treatment. So far it's worked (I'm 4 months out of treatment) and besides the dry throat symptoms and loss of about half my taste for food, life has returned to normal though I'm 40 pounds lighter.

No one has mentioned it yet but HPV16 is really a blessing rather than a curse. It responds to treatment much better than the non-HPV oral cancers do, so your long term survival is likely better. If you have cancer this is an STD that you actually want to have. We can leave the discussion of the implications of having HPV for another day if you decide to ask about it.

But in the meantime you have some mental preparation to do, preferably even before treatment begins. The first and most important thing is to realize you now have no control over a certain portion of your life. How will your body respond to treatment, how many side effects will you have, how much discomfort or outright pain will you have to endure. Here on the forum you will read about MANY who have undergone treatment. Some of them had a pretty rough go of it, but not everyone. I was very lucky, my journey through treatment wasn't bad at all. How will your journey go, who knows. It will be what it will be and everyone is different are two phrases you will hear over and over on the forum. There are a few things you can control and many that you can't. That is why Christine emphasized above to work on what you CAN control; ie your eating and hydration. You do have that in your sphere of control and if you do it right your journey will be easier. Do it wrong and you can easily end up in the hospital, malnourished, on IV feeding and worst of all your treatment delayed until you regain strength. That has happened to more than one person who didn't eat and drink enough. You will lose your taste during treatment; no taste means no appetite, so you won't want to eat. You will have to force yourself to eat. You may very well get down to where you are surviving on Ensure or Boost (I did), seven bottles per day is likely what the doctor will tell you. Don't scrimp on it, you can lose a lot of weight quickly; ask me how I know this.

Okay enough for now. Start reading the articles on the OCF website, they are very informative and will answer many of your questions. For your other questions ask them on the forum. We will help you get through this.

Again, welcome to the family.

Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Steven Zenith #179441 04-18-2014 11:36 AM
Joined: Apr 2014
Posts: 8
Member
OP Offline
Member

Joined: Apr 2014
Posts: 8
Thanks Tony. My physician made it clear that my HPV16 is a blessing.

However, I am a scientist and I will continue to inquire into alternatives. My guiding light in medicine is "do no harm" - as I noted earlier, I am not looking for conspiracy theories but genuine alternatives to radiation and chemo (and only between now and when my therapy is scheduled to start). If I do take the conventional route, and it seems likely at this point, it will be because I am fully informed, responsible for the decision and happy with it. I refuse to accept that major decisions like these are at all outside of my control.

Not only will I beat it, but I will do so happily and with the minimum harm to my structure and to my future. :-)

I love my neck and my living jaw, I'll not let go of them easily.

Last edited by Steven Zenith; 04-18-2014 11:42 AM.

Steven Ericsson-Zenith, Los Gatos, California.

Diagnosed six months earlier with TMJ Disorder.
In Late March 2014 Diagnosed with Cancer, a 2" tumour at the base of my tongue. Given a CAT scan, MRI and Chest X-Ray at Stanford Medical Center.
Referred to ENT Oncology at Valley Center, Santa Clara.
Biopsy 4/10/2014. Diagnosed with Squamous cell Carcinoma HPV16+
MRI, 4/12
Dental app. 4/17
First meeting with Radiology. 4/23
Dental treatment. 4/23
PET Scan. 4/29
Steven Zenith #179443 04-18-2014 12:02 PM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
Hi Steve,

You have the makings of a good attitude. "Good" is not enough.

You are attached to a particular outcome, that could prove fatal, or it might just change your experience from "unpleasant" to "horrific," when the only difference is mental attitude.

The attachment to a particular outcome, should the actual outcome be different, will lead to suffering caused by disappointment and fear, as fear of a different outcome than your preference is directly proportional to the emotional investment you make in desiring your preferred outcome.

Your life changed the moment you received a positive diagnosis. By clinging to your preferred outcome, you reject this new reality in favor of a fairy tale. DON'T DO THAT!

Accept that you have stepped out of the reality that you were at home in, and into a new reality. A reality in which you are unfamiliar with, and one no one wants to experience.

Well, amigo, how well and how quickly you adapt to this new reality will, to a large measure, determine how well you fare going through the entrance.

The key to a (relatively easy) trip through those portals is the ability to recognize the change, and the ability to maintain an accepting attitude.

This disease is a killer. You want to defeat it in the first skirmish, and that means you want to use the best weapons available at the time and kill it dead.

Your reality is that Cisplatin (which prevents cellular-mitosis in fast-growing cells - which cancer cells are while sensitizing those cells for radiation) at the same time as you are getting radiation to kill those cells.

There are no alternatives with a competitive record of successes on this front.

Change your attitude from "I don't want to suffer something horrible to just to beat a life-threat" to "hit me with everything that will destroy this threat to my life" and you'll be fine.

The truth is not always pretty, but it is always the truth. Just like reality.

Best of luck to you amigo, and please do not be offended by my frank tone, I want only for you to beat this completely with the minimum amount of suffering possible.

Bart

Last edited by Bart; 04-18-2014 12:05 PM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Steven Zenith #179446 04-18-2014 12:54 PM
Joined: Apr 2014
Posts: 8
Member
OP Offline
Member

Joined: Apr 2014
Posts: 8

Bart.

I assume that your "preferred outcome" is not simply that I live, but that I live without suffering. So this sounds like a "suck it up and accept the suffering" talk.

I will certainly do that if it is necessary, but not with any less an open mind and open heart.


Steven Ericsson-Zenith, Los Gatos, California.

Diagnosed six months earlier with TMJ Disorder.
In Late March 2014 Diagnosed with Cancer, a 2" tumour at the base of my tongue. Given a CAT scan, MRI and Chest X-Ray at Stanford Medical Center.
Referred to ENT Oncology at Valley Center, Santa Clara.
Biopsy 4/10/2014. Diagnosed with Squamous cell Carcinoma HPV16+
MRI, 4/12
Dental app. 4/17
First meeting with Radiology. 4/23
Dental treatment. 4/23
PET Scan. 4/29
Page 2 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5