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Newly diagnosed with tonsil cancer radiation treatments and chemo to start in a few weeks asking for advice

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

My name is Vicki and this is my first post. I'm asking for advice for my husband John, 57, who was diagnosed with Stage IVa tonsil cancer in July. He found a lump on right side of neck in June, was sent to ENT who ordered a CT that confirmed mass in one node. In July had surgery to scope throat area and tonsil was removed. Biopsy showed 0.8 cm squamous cell carcinoma of right tonsil nothing on tongue or in adjacent tissues. End of August had surgery for modified neck dissection and removed 38 nodes; only one showed cancer and was 4 cm. We've talked to 3 radiation oncologists and 1 chemo dr; half are saying we could just monitor due to fact cancer was small and only one node and no tissue invasion. We feel it's too risky to just monitor so have started process for radiation treatments. Got fitted for mask and are waiting for treatments to start. Not sure about chemo; since several are saying we could just monitor we were wondering if radiation treatments would be enough?

We are looking for any advice or tips you could provide as to what we could to prior to the treatments to prepare his body for the effects of radiation and possible chemo (such as taking AHCC or other supplements). Is the Caphosol rinse something that our doctor can prescribe to help with the mouth sores that the radiation causes? It looks like it is still in the clinical trial stage.

Thanks, Vicki

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Let me first say, that I am sorry that John has been diagnosed with SCC right tonsil and you find yourself in need of these message boards. Also know that you have found yourself an amazing resource for information, support and care. I know because Mark, the guy with me in the picture (partner of 6 years) was diagnosed with SCC left tumor HPV+ Stage IV. He had extensive surgery including radical neck dissection, where they took all the nodes on the left side and his neck muscle. (He's still cute). He then had 6 weeks of radiation with chemo (Cisplatin to start...but hearing loss made him switch to Carboplatin and Taxol). He is almost 3 months post treatment and doing great. Awaiting first post treatment PET in November.
But back to you and John: first question I have is whether John is HPV+ or not? This has some significance. Second, is the radition he is about to under go IMRT? It is the best.

In anticipation of starting treatment I suggest he enjoy eating. Taste, saliva, and swallowing will all be compromised during radiation treatment, making something that he enjoys into quite a chore. Also, something that has not been posted very often here, but I felt made a huge difference for Mark in tolerating pain was a drug called Neurontin. Mark started taking it early on, and continued throughout treatment. It does something at the nerve level and helps to keep ahead of the pain.
Below are some tips that I recently posted that can help with some of the side effects of radiation.
Things to know for radiation treatment:
Drink lots of fluids. 60ml is the recommended amount.
Drink calories…not just water: Gatorade, vitamin water, shakes.
L-glutamine- a spoonful full 2-3 times a day mixed with anything.
Salt/baking soda mouth rinse. (Mix 1/2t salt, 1/2t baking soda, with 1 liter of water. Rinse and gargle as often as possible. (soothes sores, and clears mucus)
Pure aloe for the skin. Make sure it is 100% aloe…some has alcohol in it… don’t get that.
Aquafore for the skin: slimey but very soothing.
Pain meds: can vary depending on level of pain. (Neurontin, dilauded…)
Biotene tooth paste…doesn’t burn.
Floride trays for teeth…lack of saliva damages teeth. (See a dentist who knows about radiation treatment to the head and neck.)
Fluconazole for thrush.
Prilosec if there is heart burn.
Stay on top of constipation. Some pain meds cause constipation (Senekot)
Keep swallowing.

My very best to you and John. Stay on the boards...you will literally have international support from wonderful people who are at many different stages of recovery/survivorship.
This is doable.
Kim

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Kimba pretty much covered all your bases! I just wanted to wish you and your husband good luck with everything. I have SCC unknown primary and am in my last week of radiation. I just want to tell you that you will be John's everything through this period. I count on my husband for everything, mostly to keep my spirits up (which he is amazing at!) so just remain by John's side. Towards the end is when it got the hardest for me, so prepare yourself for him to need you in a lot of ways. I pray he goes through this with the maximum ease! I'm sorry you found yourself here, but like Kimba said take advantage of this resource. Pretty much EVERYTHING I know now was b/c of these amazing people and their posts.

Lots of love to both of you,
Kristyn

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

Thanks for the well wishes and I'm so sorry to hear that you have been diagnosed. Thanks for the advice and I'm trying to be as prepared as possible to help John through this. Hope you are doing well now and continue to do so. When John was diagnosed we didn't know anyone who had been through this so these posts are so comforting.

Take care and have a great day,

Vicki

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

Dear Kim,

I agree this is an amazing resource and I have been reading the discussion boards since John was first diagnosed. With so much going on this is the first chance I have had to join and I'm glad I did. We do not know if he is HPV positive or not. One of the radiation oncologist we talked to mentioned we could have him tested but didn't elaborate. I have read it does make a difference in the cancer being more receptive to the treatments. Since we are still waiting to hear back from the radiation oncologist on when treatments will start I would guess this is still an option. The radiation he will be having is IMRT; we asked about that. The doctor said she would do all she can to try and reduce the impact on the salivary glands. He is getting a PET Scan, his first, tomorrow morning and his dentist appointment tomorrow afternoon. He is also scheduled for a baseline hearing test on Tuesday since chemo can have an impact as it did with Mark.

Thanks so much for the tips; it will give us great comfort knowing what do as differenct symptons arise. Happy to hear Mark is doing well 3 months post treatment; hope you have good results on his upcoming PET Scan. Have a great day and thanks so much for getting back with us.

Vicki&John

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

If his dentist doesn't prescribe fluoride trays, you should find one who will. I was assigned a dental specialist when I was being treated at Johns Hopkins, and he got me started on the trays as I was beginning radiation. I also had very frequent checkups during treatment.
He told me that I would need to use the fluoride trays for the rest of my life. (After that, I can quit.) I'm two years out, and thus far have had no major dental problems.
I'm sure you'll keep checking back here as he progresses through treatment. I only wish I'd discovered this resource during treatment, not after.
Best of luck to you both.

--Jim in Delaware

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

Dear Jim,

Thanks for the advice on the flouride trays. I will make sure John asks our dentist; we have been going to this particular dentist for 25 years so we have a good relationship with him. Hope all is well with you; thanks for sharing with us.

Vicki & John in Arizona

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Also sorry you have a reason to be here - glad you found the site. The only advice I'd have to add right now is never feel badly about calling your docs. The faster you let them know when something "pops" up, the faster your medical team can help to resolve or relieve it. Do well - keep us updated.

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

Pam,

Thanks for the advice about calling the doctors. I just called and made another appointment for tomorrow with the radiation oncologist to ask some more questions prior to starting the treatments. We haven't heard when they will start but I would guess it will be soon.

debbij
Posts: 22
Joined: Oct 2009

you are right on...i feel for both of you..having been 8 months out..its a long road and kim DO NOT be afraid or embarassed to ask for help from friends and family...you cannot take this on yourself..believe me, i know...i am in the medical profession and i couldnt take the pressure and still cant..hang in there...i'm here for you if you need to bounce off any feelings or to just vent...you can contact me directly at kahluakween@optonline.net or debra.vazzana@mountsinai.org

MarineE5
Posts: 760
Joined: Dec 2005

Hello Vicki and John,

Well, there isn't too much more that I can add to what Kim, Jim and Ruth have mentioned. Kim mentioned the Baking Soda and Salt solution and I swear by this as I used it the whole time I was doing my radiation. I did use a bit more of each in 1 quart of water. I used 1 teaspoon of each at first and then increased it even more to 1 tablespoon of each as treatments went on. Rinsed and gargled as often as every 30 minutes if I felt I needed to.

I also was given Neurotin like Mark, for my pain during Radiation. The Baking Soda and Salt solution took the edge off of the discomfort for me during the first 4 weeks of radiation and then I started the Neurotin. As Kim also mentioned, constipation, I was told to use the liquid form of " Colace " which is a stool softner. I used it once every other day and it worked well. As Kim also mentioned, fluids, at least a total of 64 ozs a day and that will also help with the constipation.

You mentioned about Radiation only verses Radiation and Chemo combined. I had Base of Tongue cancer in Oct of 04. Had part of my tongue removed, Radical neck disection, Peg Tube, and a Trach. After the surgery, I was given 7 weeks of radiation. The Radiation Oncologist and the Surgeon said that they wanted to keep Chemo as a back-up for me in the case of re-occurance. That was 6 years ago. I didn't have the Chemo and I was just at the Radiation Oncologist and he just gave me the option to stop visiting him or came back in one year.

My Best to Both of You and Everyone Here

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

Thanks for your advice on the baking soda and salt, Neurotin and what to do for constipation. It was encouraging to hear that you had radiation but not chemo and it has worked for you. John just had his first PET Scan on Monday and it was negative; the radiologist that read the scan said it was all clean. In spite of that radiation is still being suggested but we are thinking about not doing the chemo at this time and keep it as an option for the future. We meet with the radiation oncologist tomorrow and will see what she thinks.

My best to you as well,

Vicki

Hondo's picture
Hondo
Posts: 5892
Joined: Apr 2009

Welcome here to out little family on CSN, I am sorry to hear that you have this C but glad you found the place where you can get some very good advice and help.

jds57's picture
jds57
Posts: 7
Joined: Oct 2010

Thanks for the welcome and I am so glad I joined. Hope all is well with you.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Hi Vicki,

John sounds like he is going through similar to me and other here.

I'm 56 and diagnosed with throat cancer (right) with a lymph node also that flared up. That was January 2, 2009. On the 5th, they removed the tonsils and indeed confirmed it was SCC, STG III, later confirming HPV+. I'm a non-smoker and casual drinker.

They installed a port of the chemo that would follow. My ENT is the lead of a team for me, chemo, radiation and surgical.

The plan of attack for me was nine weeks (three week cycles) of chemo (cisplatin, taxotere amd 5FU which was through a pump 24/7 for four days.

That would be followed with seven weeks of chemo (carboplatin weekly) and 35 days of radiation with amifostine injections. The amifostine was recommended by my chemo MD to help prevent thick mucus and also help retain salivary function. To me it worked as I never had the thick choking mucous of some and now at 16+ months post treatment I have regained about 80% of salivary function...long slow process though. Seems most rads MD, don't suggest the amifostine, but everyone on here that I can think of which had it, would recommend them.

They opted not to have a PEG for me as I was heavy and not of danger of wasting away. The option was always there and I would have taken it when recommended to do so.

They also opted not to do a dissection at that time waiting to see results from chemo and radiation. The tumor dissolved after the 3nd round of chemo, and didn't return..

It's a long slow process, but doable....

Most everything that you need to get started with has been covered. Everyone here is very helpful and each have a lot of experience of their own to contribute to most anything that you may encounter.

Best,
John

wifeforlife
Posts: 189
Joined: Feb 2010

Vicki,
There are so many caring people here. As you can see there is a lot of imformation, don't feel like you have to remember it all at once. Take it a step at a time, take quiet time for yourself, and when in doubt...get on here and ask!!!
My husband was diagnosed 11 and 1/2 months ago. He is doing well, back to work and eating most things...still drinks a lot of water but LIFE IS GOOD!
One step at a time!
Take care,
Wifeforlife

wifeforlife
Posts: 189
Joined: Feb 2010

Vicki,
There are so many caring people here. As you can see there is a lot of imformation, don't feel like you have to remember it all at once. Take it a step at a time, take quiet time for yourself, and when in doubt...get on here and ask!!!
My husband was diagnosed 11 and 1/2 months ago. He is doing well, back to work and eating most things...still drinks a lot of water but LIFE IS GOOD!
One step at a time!
Take care,
Wifeforlife

hawk711's picture
hawk711
Posts: 527
Joined: Jan 2010

John & Vicki
We all hate to hear when anyone gets to come on our website to discuss a new diagnosis. We wish that this site didn't exist, but it does and it is a great resource. First of all, we are all different in how it effects us, but much is the same, it is mostly the degree of all the side effects that differs. I had a PEG put in and was glad I did. I couldn't swallow for 8 weeks after radiation, 37 rads, 6 of Chemo (Cisplatin) and the Tube helped me keep most of my weight up and my energy level high. I recommend talking to your Dr about it, they don't push it, but it is a great precaution to take. I'd hate for John to have to have it put it when he is feeling like crap during Rads...
If John get's the heavy mucous that most of us got, I recommend a suction machine to keep his mouth clear. I got one late in treatment and it was wonderful, better than spitting all the time.
You will need to write down everything John takes for meds as you'll forget during the day, trust me. My wife kept a journal of all meds taken and any side effects to discuss with our Dr. She was a god send for me as you will be for John, Vicki. This is a team effort, with John feeling the largest participation, but it will be tough on you too Vicki. It is tough to watch your loved one in discomfort and maybe pain, so get ready to get the cheerleader suit on with positive love....
I am 7 months post treatment and still have my PEG in and cannot eat much yet, but it gets better every week and month. Tell John not to measure the improvement daily, as it is discouraging, rather measure it Monthly and you'll see big changes then....

All the best to you both, Keep us posted and we'll help cheerlead too...
Steve

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Hi, and welcome to our site. I too had Tonsil Cancer, but mine also spread to near the base of Tongue and also to some of the soft palate. Mets to my neck was pretty severe. 21 nodes removed with 19 testing positive for Cancer. I found my mass on June 12th, was offcially diagnosed July 2nd. My Partial Neck Dissection was to be a one day event, but when the surgeon started the tonsillectomy, the cancer spread like an "oil slick" on my skin. Needless to say, just the mouth part was 8-9 hours of surgery. I was placed on a vent and was in a drug induced coma for 2 days so I could rest. The neck was done 4 days later and that too was a 9 hour day.The cancer in my neck was very agressive, and I was fortunate that the surgeon was able to peel away the cancer and did not need to touch my muscle or my Vein. The next day my surgeon restaged me as stage 4 but middle of the road, vs the best stage 4. He found so much more cancer than what my neck scan and PET Scan showed.

Based on my story, my team decided to do 30 Rads to both sides of my neck, which I finish in 2 days, and 3 rounds of Cisplatin, which i finished yesterday. I will be honest, the side effects i am going through are awfull. I cannot immagine being so sick for so many days in a row. I just have to believe that i am paying a hard price to hopefully be cancer free.

Hope this helps.

BEST!!!!

Mike

midnite
Posts: 1
Joined: Oct 2010

you can us thecapasol we did and it helped my husband.

Johnny 5
Posts: 1
Joined: Mar 2013

 

I'm another John in Connecticut that found this string of information VERY helpful as I begin whatever journey lies before me. First and foremost, if you are still on this network, I'm wondering how your John is doing these days?

 

 

I am 51, overweight but in otherwise great health. Recently diagnosed w an encapsulated SSC in my tonsil after about 6 - 8 weeks of increased swelling on one side after strep throat inflated both tonsils.

Surgeon staged it at - "stage 2+" (he said the oval-shaped mass measured stage 2 at thickest point of tumor but crossed the stage 3 threshold at its "longest" point, so the oncologist will stage it at 3).

 

 

I had a head and neck CAT scan shortly after both tonsils were removed, which showed me clear except for the lymph nodes which were 'lit up' from post surgical recovery according to both my radiation oncologist and my ENT/surgeon who biopsied the tumor. That rendered the neck part of the scan unusable.

 

My PET scan, which was done almost 5 weeks after the surgery showed almost all zeros across the board - just a couple of results well within what my surgeon described as normal - or readings he said folks without cancer might exhibit.

 

 

The sugeon/ENT, who did a stint at Sloane-Kettering, said where most radiation oncologists might still want to radiate the immediate area of the surgery, just to make sure I am clean of cellular level activity. But he "could not make a case for chemo based on the PET scan and post-op blood test results."

 

He told me if my medical oncologist was insisting on chemo AND rad, I might consider getting a second/independent opinion.

 

 

 

 

My consult with the radiation oncologist was shortly after the CAT scan, but before the PET scan. And he had already was prepping me for radiation with intermittent chemo to help enhance the radiation's effectiveness - or if the PET scan was negative, at least some course of radiation. That resulted in several dental procedures to pull impacted roots and remove or fill several areas of low-level decay - as well as getting fitted for dental plates, which I now have (not covered by insurance).

 

 

Then, when I met with the med oncologist yesterday, he had the direct opposite reaction. The med/onc said I needed several powerful chemo treatments at the beginning, middle and end of what he said would be 'very painful' rad treatments. He and his nurse discussed me getting Emend - a VERY expensive anti-nausea med. Also advised me to begin a combination of activities and Senocot-S for what would likely be very bad constipation, hearing tests to get a baseline because the chemo could cause hearing loss and kidney failure, that I should be prepared to lose my hair (face and head) and probably a significant amount of weight.

The med-rad advising against a feeding tube - unless it looks like I will need it once I begin the treatments, and is also holding off on IV for hydration except before, during and immediately after the 6 - 8 hour applications of chemo. 

My greatest concern, however, is the impact on down time and my voice, since I work in the media and am subject to replacement if I can't produce my material as needed and on deadline. My work in broadcasting, as well as my part-time work as an MC and singer could also be permanently affected by the treatments. Virtually 90 percent of my income as a sole earner in my household is dependent on me using my voice - so this whole situation has me quite on edge.

Any input out there when your doctors have such divergent opinions of post-op cancer treatment? I am already absolutely getting a second opinion, either at Sloane or Yale/Smilow, but I'm wondering if anyone out there went with NO radiation, and just monitored post-op recovery with scans and blood tests??

Long story up to now - I just don't want to put myself in a situation where the "cure" being recommended by the oncologists would push me into possible career-ending and job threatening circumstances. No disrespect to the cancer docs, but they stay in business by recommending and carrying out the most billable treatments possible, based on their concept of ensuring the greatest likelihood of survivability from any cellular-level cancer that MIGHT remain in me.

So what do Vicki and John and anyone else think??

 

 

 

 

 

 

 

 

 

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

For Johnny 5

Really, it's not about the money. It's about hitting the cancer as hard as they can, because right now, what you have CAN be completely cured... and if it returns, it will be incurable, and will most likely take your life within a couple of short (painful) years.   What you have is very like what I have, and what everybody else here has or had.

The treatments being proposed are the same as all of us have gone through.  We are on the same first name basis with Emend, Zofran, Ativan, Compazine... three rounds of Cisplatin (aka 'the raging bull') and nasty radiation burns to the tongue, throat, neck et al.  Many of us also had the feeding tube.

We all have various long term effects.  Will this change your voice; yes, very likely.  Will this screw with your thyroid, salivary glands, ability to swallow... yes. 

You have a very important decision ahead of you. Some of us here, for various reasons, chose to decline various treatments.  Only you can choose for yourself.  Personally, I chose the path that would most likely result in a complete and permanent cure.

Deb

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

You DO have cancer cells wandering around inside you.  Keep reading.  There are more than a few individuals here who were treated for various Stage 1 malignancies with surgery only.  Some of them have already returned with advanced and/or metastatic disease.

Deb

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

Start a new thread of your very own...introducing yourself and throwing your questions out there....this is a very knowledgable and supportive group....and will be more than willing to help you out.   You'll get a lot more responses that way.

I had 35 rads and 6 chemos....starting in April of 2012 lasting till August 2012, was back to work in October.  Funny how most of us think about our jobs first...and amazing how many employers get behind the cancer patient.  Like Deb said, you need to make some decisions here.....in my opinion, death would be the real career ender....

p

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi John,

Welcome to the boards. Sorry we have to meet under these circumstances. 

Our stories are quite similar. This will probably be a long post because I want to share my expeience as I feel it will help. Our Dx are a little different I'm Tx N2b MO Stage IV. They were unable to locate the primary site and I had surgery twice to remove tonsils (palatine and lingual) as well as a selective neck dissection to remove the tumors (2@4+cm along with 24 lymph nodes).

We're almost at the same point in our journey as I have my first treatment March 13th (simulation rad run with the 1st run the 14th). I'll be getting 35 radiation treatments and 7 chemo infusins (Cisplatin). I had to be cleared by my dentist as well. Fortunately I only had to have 1 extraction. I am aware and prepared to have dental issues afterward but I'm hoping that a very attentive dental hygiene regiment wil minimize this. 

I had my appointment with "current" Radiation Oncologist a couple of weeks ago prior to getting the mask made. While we'll be irradiating a broader area in various strengths due to my unknown primary situation, they wouldn't be irradiating my larynx (two seperate laryngoscopies showed everything normal). He was up front concerning throat pain but assured me that my voice would be spared. I will be hoarse and swollen and there will be some swallowing issues to deal with, but he fully expects my voice will return. I would definitely discuss this aspect. Because of the pain I've had with my throat after surgery (pretty bad even now and still on a soft food diet), he's recommending a feeding tube as insurance. 

I have my appointment with my Medical Oncologist a few days into rad treatments. It will take 4-6 hours for chemo infusions. Side effects from chemo drugs can affect hearing, site and other functions so it doesn't surprise me about the tests. Laxitives are a necessity as pain meds constipate you. Anti-nausea drugs are necessary as the chemo will make you sick. Concerning the cost? There are many that are generic and just as effective. There are also programs that help patients get expensive drugs at a discount or free. Ask the cancer social worker about those programs. They say (and its true) that it's easier to stay ahead of the pain and nausea than to play catch up. I take that advice to heart.


What you and I share the most in common is our voices. 
I work in the sales and marketing field in the music industry and I, like you, speak to make a living. I'm am literally the voice of the company, speaking on the phone every day and doing seminars and conferences. I'm also a musician. I played and toured professionally most of my career. I recently came out of retirement and started playing again solo locally. I've been quite successful and I gain much joy from performing, more so than I did when I played full time. So as a part time career, it's been a huge positive in my life as well as lucrative. Like you, I fear the ramifications of radiation. What would I do if I lose my voice? The fear is legitimate and quite real. 

I will say three words concerning a 2nd opinion... YES...YES...YES!!!  The very fact that you're asking that question warrants a 2nd opinion and I'm glad to see you're doing it

When I started my journey, I was seeking treatment locally here in Virginia (Winchester). I had an ENT (who did the first tonsillectomy and biopsy), a Radiation Onclogist and a Medical Oncologist. They did not operate as a team. It all seemed disjointed and there was a lack of communication. Everything that happened just didn't "feel" right. Because of that I sought a 2nd opinion at Johns Hopkins which is two hours from me. They are one of the best comprehensive cancer centers in the US (the other hospital by comparison was not an accredited cancer center scoring only 24.7/100 nationally).

I made my appointment and they gathered all the test results from the labs and hospitals prior to my arrival. I had several people from the hospital contact me prior to my arrival making sure everything was in order and asking questions as well as answering mine and addressing my concerns. When I arrived I was taken to an exam room and within minutes an entire "Team" of doctors and specialists came into the room. A Radiation Oncologist, a Medical Oncologist, a Surgical/ENT Oncologist, a Language/Speech Pathologist, an Oncology Nurse Practitioner/Manager and the Coordinator of the center. They all were in sync with my history and records and all knew the results of my tests. I was poked, prodded and examined more in 25 minutes than I was the entire time I was at Winchester. 

Upon review of the radiation treatment, they were opposed because it would have serious ramifications to my voice with potentially irreversable damage to my vocal chords. Based on the size of my tumors, they were surprised that surgery wasn't the first step. I asked these questions when I met with the local doctors and did not get straight answers. I was not told the entire story. At Johns Hopkins, it was an entirely different approach and you could feel the air of confidence in that room. 

I had another incident that took place locally but I've written quite enough ~lol~ Needless to say the decision was a no brainer. Confidence in your "Team" is essential to your confidence and positive mental attitude. Seeking that 2nd opinion will give you peace of mind and voice.

Positives and prayer concerning your journey. This is a great forum and the folks here are amazing. Keep us up to date on what's happening. Best wishes.

"T" 

PS... this would be good to put as a new thread... I think John (Skiffin)is able to do that.

Duggie88's picture
Duggie88
Posts: 557
Joined: Feb 2010

I want to refer you to what they say in the great state of Oreagn. You know what that is? Me either point being, with the fear of the unknown definately get the second opinion. Better to do it, than to second guess it later. Certainly you want to prepare yourself for every symptom related to the tough task of ridding yourself of cancer. We all react differently to treatments and although I never had to do chemo I did have an extended stay in the operating room and made many friends traveling over 140 daily for radiation and I can tell you it was all worth it. My doctors (the ones I chose to treat me) always quoted me statistics along with their recommendations so I put my life in their hands which resulted in me being able to address you today. I did and still today have excellent health care coverage but never hesitated in doing something that involved an out of pocket expense. All along I knew my trademark voice was going to be jeopardized as it most definitely was but after 3 years it is still making a comeback. My job requires speaking publically and I was scared to death of how people would react both the ones who knew me before my cancer ordeal along with the new ones I met afterwards. I even volunteered for speaking engagements related to my work to build up my confidence allowing me to feel comfortable with whom I am today.  My point is, get rid of the cancer at any cost it makes life worth it. I wish I knew about this website while I was going through treatment, there are some wonderful people  here that can get you through it all.

Enjoy the day…………….I do……………..every one of them

      Jeff

 

Hard12Find
Posts: 208
Joined: Sep 2012

If I were to add anything to this thread it would be to "Pack on the pounds" while appetite and ability is there. I went from 225 lbs to current weight of 141 through the duration of treatment and recovery. Best wishes to you and John as he makes the journey.

Jim

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Johnny5, I would like to echo Phrannie's request that you start your own thread so that we can give you and John & Vicki each the personalized attention you deserve.

 

I too had SCC, though base of tongue (BOT) with lymph nodes effected on both sides.  My treatment was the same as John (Skiffin) in that I had Induction Chemo (three rounds of very strong chemo) and radiation.  In fact, I just past 4 weeks of being done treatment.  The purpose of the induction chemo is to eliminate the danger that cell(s) might have escaped from the area where the infection is to another part of the body.  Just the thought of going through all that we all have gone through and ending up having it pop up somewhere else made the decision to go with the direction of my team an easy one.  As for the treatment itself, both Chemo and Radiation are quite challenging.  Not impossible, just difficult.  Once you have a firm treatment plan in place you'll find the suggestions you get from this group is truly remarkable in their ability to make the road as smooth as possible.  They've all been though it and know what works and what doesn't.  If there was ONE thing that I learned going through treatment, and you'll see almost everyone here echo it to you as often as possible is be sure to hydrate.  In the beginning of my chemo I did not pay enough attention to that advice and it caused an enormous amount of unnecessary pain and suffering.

So, I'm really sorry you guys had to wind up here, but your could not have found a better place to be.  Come back often, ask anything and you'll be amazed by the amount of caring, knowledgeable folks that populate this board.

Joe Cortney

Dallas, TX

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