Looking For Advice

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RE: Looking For Advice

by Oscar1 on Sat Dec 27, 2014 04:08 PM

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Steve thanks for getting back. Went through the weakness and yes am coming back . My problem is pain on right side when swallowing from my jaw right through my ear canal feels like an ulcer. How long did you have pain after radiation. Pain is there when swallow and am swollen sometimes on that side in mouth. That is why I am asking if anyone else had any of these symptoms after treatment. Ifs this normal recovery. You may have had a tube but did you have pain when you just swallowed and had to take meds? You said you used a feeding tube more than swallowing why, and this is important were you in pain to swallow or just could not get use to it. Please reply as I am going back to cancer institute to try and get answers am worried. Thanks oscar.

RE: Looking For Advice

by Oscar1 on Sat Dec 27, 2014 05:01 PM

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Hi Susan not going to hospital. Am going to moffit cancer institute to get evaluated. This pain is not right. I wrote tom and it explains what I am going through. If you would read it and reply also. Give an opinion it helps very much. When you read it you will understand why I am worried this recovery does not seem to be going right. Everything else is normal recovery except this pain in my throat. Please read what I replied to Tom. Have appointment on the 30th. For this new evaluation from supposedly one of the #1 cancer institutes. Am just very depleted as you probably can see by my writings. Do not know which way to turn. Please reply as all is very helpful. Did you ever have pain as I described to Tom. Thanks oscar.

RE: Looking For Advice

by steve77 on Sat Dec 27, 2014 05:13 PM

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Oscar,

Clearly, you need a medical opinion on this, so what I offer is just my experience... The primary pain I had was soreness in my throat; swallowing was very painful, and that is why I used the feeding tube, even for meds. Even sipping water was painful when I swallowed, besides the unpleasantness of the texture of food.  I did have some pain on the right side of my neck, and this was a lingering mild pain. I was told this was likely due to scar tissue from the radiation- I can still feel it, but it is very mild - probabaly chronic.  Also- my hearing was very sensitive in my right ear - sitting in the kitchen with clanging pots and pans or being in a noisy place was quite painful. That slowly got better. I never had that before the radiation. It is really important that your docs know about any hearing related issues. That very slowly improved, but now, I have mild tinnitus in my right ear - it is always ringing - that may have nothing to do with the radiation, as it didn't emerge for several years after treatment finished. The throat pain when swallowing seemed to continue for at least a month or two - and I tried to avoid swallowing as much as I could - that is why I used the feeding tube so much.  I also had soreness on my tongue, and sensitivity to acidic foods - I think I might have had a radiation burn on my tongue which was slow to heal. I do not recall having any swelling in my mouth or neck, so I do not know if that is normal or not. I hope you get nothing but good clarification and good news at your appointment at the cancer institute.  The "not knowing" is the hardest thing of all to deal with. All the best - God bless- Steve

RE: Looking For Advice

by Enrique.V on Sat Dec 27, 2014 06:50 PM

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On Dec 17, 2014 4:13 AM HopeandGene wrote:

My husband was diagnosed in October of this year with Tonsil cancer that has spread to the lymphnodes in both the left side of the neck lymphnodes and the right. As we were waiting for answers, getting biopsies and preparing his mouth such as 4 teeth extractions and 3 root canals, we can tell the Cancer is getting worse, pain, swelling on left side of face shooting pain in ear, he has stage 4b, he will be starting radiation and Chemo on December 22 with all the bad side effects that have been explained to us and what he is going to go through, I am wondering if it's worth him going through it, we can't seem to get straight answers about percentage rates of cure, quality of life after treatment, etc. can anyone please give us some advice thank you so much. Scared:(

Hi,

I am a stage IV colon cancer patient.  I've done chemo for over a year and natural alternative treatments as well.

Nobody can tell you if chemotherapy is the right thing for you.  You will know one way or another at some point during your journey. I'm not a doctor and I can only give you  advice based on my own experience.  See a specialist and do your research before accepting the following: 

1) Diet: eliminate red meats (anything coming from a four-legged animal) and stick with fish, eggs and chicken; eliminate refined sugar and sweeteners from his diet. No sodas or fruit juices; add water and lemon or just pure water as his main drink.  Increase the intake of water to at least a gallon a day. Replace coffee with green tea or matcha. Replace milk with almond milk,  eliminate dairy products (cheese, butter, milk, yogurt, ice cream), and replace with good vegetable fats, when possible switch to organic food, especially with greens, berries, and fruit in general, except for mango, pineapple. kiwi. If he wants to have some fruit juice, make it from scratch and add veggies to it (80% veggies, 20% fruit).  Keep it low-sodium, if he needs salt, use sea salt.  Eliminate all processed foods, cold cuts, frozen meals.

2) Rest a lot; together with drinking, this is essential for cancer patients.  Even resting through the day, short naps, all helps.  A body with cancer needs rest.  My doctor told me that no amount of drugs, good diet and supplements will do their job unless the patient rests.  This means at least 8 hours of sleep and a nap here and there.  There's no way out of this one if you want to be healed.

3) Exercise: Walking, exercising not to become fatigued, but to oxygenate his body.  Once or twice a day, 20 minutes each time is enough.  Cancer cells are anaerobic, they thrive without oxygen, while oxygen deprives tumor cells from what they need.  Let's give them oxygen.

4) The food in #1 above should start making his body more alkaline (as opposed to acidic).  Give him half a teaspoon of baking soda dissolved in 4-8 oz. of water once a day.  This and the lemon water help keep the body less acidic.  Get a urine pH strip to measure his urine pH every morning. Bring it as close to 7 as possible.

5) Destress and be happy: Stress is a major contributor to cancer.  Eliminate all possible sources of stress, unnecessary commitments, etc. Meditation and prayer are essential to eliminate stress. Be happy!  Enjoy time with each other. This is a journey and there is a way out of it.  We learn through disease. Take on Reiki or other energy work techniques to help your body and mind relax and reach balance (homeostasis).  Stop watching news, crime shows, etc., and instead indulge in comedies, funny, and feel-good movies.  Help other people with cancer by telling them about your process. By eliminating stress and being happier, we are fighting cancer from its root.  And uproot it we will:-)!

6) Develop your spirituality.  If you're not religious, you're going to need supernatural help, this is not just a human battle, it is a spiritual battle.  If you believe, pray.  If you don't, have others pray for you. If you used to believe and became disenchanted, give it a different loook.  Agaian, this is a spiritual endeavor, and no matter all we can do as human beings, there is a spiritual component that must be addressed so the cancer, once it is gone, it is gone for good.

7) Persevere, be consistent, stick to the plan.  Whatever you decide to do, do it and go all the way.  Do not get discouraged if you don't get results immediately.  Stay focused on the prize, regardless of how you feel at any given time.  Keep it going and do not stop what you have commited to do unless you realize some decision you have made has done you harm.  Then shake it off, stand up, and get back with your life.

8) See the light at the end of the tunnel.  Visualize yourself being cured, helping others, spending more time with your loved ones once you are cured.  Be grateful for this opportunity to grow. Stay positive. Search for cancer survivor stories, eat them up, make them your own.

9)  Make goals for the short, medium, and long term.  This doesn't mean you ignore death and its consequences.  No, by all means consider what will happen if you or your loved one dies.  Deal with life insurance details, update your will and testament, etc., so everyone feels safer, knows what to expect, and understand that you accept death as a fact of life and as a possibility.  However, focus 100% of your efforts in relaxing and visualizing a better future that cancer has prepared you for.

10)  Cancer is here to rock your world, to let you know that something needs to change.  It may be the diet, the stress level, or a combination of factors.  Only the cancer patient knows what he needs to change.  But sometimes he doesn't because he's too scared to think.  This is why practicing meditation and having an encouraging environment at home are essential to being cured of cancer. Anger and fights make a fertile ground for cancer.  A good sense of humor is cancer's #1 enemy. Laugh until cancer leaves you.

May God bless you.  Happy healing!

RE: Looking For Advice

by Sdurnell on Mon Dec 29, 2014 05:09 AM

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Enrique,

I'm wondering why you are replying to a post about head and neck cancers.  It's nice of you to offer your dietary regimen and other advice for consideration, but you do so with no documentation whatsoever.  And it's obvious that you have no idea about the brutal treatment for head and neck cancers, which centers on radiation, not chemo.

Many of us can't simply modify our diets, as we can't eat at all.  And those who can are often very limited in what they can keep down.  The most important things for us is to get in enough calories and protein.  And we still lose huge amounts of weight.

And some of your advice makes no sense.  Lemon to make the body less acidic?  How absurd (violates elementary chemistry fundamentals)!  Let alone the idea of lemon on a mouth, tongue, ane throat made raw--or worse--by radiation!  But really, neither lemon water nor a bit of baking soda is a match for stomach acid.

And this is a very, very human battle.  Athiests have been known to "win" it as well as believers of all stripes.  We humans need one another to get through, hence this site.  Prayer is not a bad thing, but this is not a popularity contest for God.  You will not do better or worse by praying or not praying.  This cancer does not respect race, sex (although it's much more prevalent in men), religion, or even age these days of HPV + cancers.

Many of your ideas are basic for living a healthy, stress-free life.  And many of them may apply to head and neck cancer patients in the future.  But for now we need to keep our expectations reasonable and conserve our strength for the massive battle that is radiation treatment.

All the best to you in your treatment, which I'm sorry to know has a poorer prognosis than ours, but is nonetheless survivable as well.

Susan

RE: Looking For Advice

by violet1982 on Thu Jan 08, 2015 04:15 AM

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On Dec 27, 2014 5:01 PM Oscar1 wrote:

Hi Susan not going to hospital. Am going to moffit cancer institute to get evaluated. This pain is not right. I wrote tom and it explains what I am going through. If you would read it and reply also. Give an opinion it helps very much. When you read it you will understand why I am worried this recovery does not seem to be going right. Everything else is normal recovery except this pain in my throat. Please read what I replied to Tom. Have appointment on the 30th. For this new evaluation from supposedly one of the #1 cancer institutes. Am just very depleted as you probably can see by my writings. Do not know which way to turn. Please reply as all is very helpful. Did you ever have pain as I described to Tom. Thanks oscar.
Oscar, My mom is almost 5 months out and is having severe pain in her tongue, jaw,ear. She went to her oncologist he said its nerve damage from radiation put her on vicodin and said will probably have to put her on neuropentin/gabapentin for it in the long run. Has alote of pain eating and swallowing to where she dreads eating. Talk to your onto doc to see what he thinks. Best of luck. Violet1982

RE: Looking For Advice

by Wein55 on Tue Jan 13, 2015 11:50 PM

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Hi HopeandGene. This is a very scary road we have been put on. But keep reading and you will see that YES it is worth trying There are no guarantees in life, but, giving up should not be an option. Again, read more on this site. There are so many wonderful, helpful people to help (us). Through this. It will amaze you to see how many are out there going through the same scary experience. And how many are doing well. Hang in and best wishes. Wein

RE: Looking For Advice

by bluesunshine on Wed Jan 14, 2015 01:38 AM

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Susan, thank you for all of your thoughtful and informative posts, your advice always seems very accurate. I am 3|4 of the way thru treatment for tonsil cancer. I am receiving chemo and radiation and I am now starting to look ahead to the recovery phase. I am very eager to get to this phase and the advice and info on these boards has been very encouraging, especially yours. I have stage 4 but am thankful that it is HPV. I am 55 years old, live in Massachusetts. I am thankful that the facility I go to offers complimentary acupuncture, reiki, yoga etc and I plan to take advantage of the acupuncture to help heal my taste buds- it has already helped with mouth sores. Thank you to everyone for posting your stories of encouragment!!  Karen

RE: Looking For Advice

by gr0619064 on Wed Jan 14, 2015 03:58 PM

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On Dec 17, 2014 7:23 AM Sdurnell wrote:

Hope,

I know that this is a scary time for both of you.  You have to make his doctors level with you about his chances in order to decide whether the treatment will be what he chooses.  

Tonsil cancer is curable in most cases, even at stage III and IV.  The treatment is brutal, though, and can have permanent side effects.  I was diagnosed with stage III four years before your husband, and have been clear ever since I ended radiation in Feb. of the next year.

Your husband's cancer is advanced, and the radiation with chemo is his best option for survival.  It may also depend somewhat on his age and other health concerns.  If he is HPV positive, his disease will be more amenable to treatment than if it has other causes.

Radiation can damage teeth, so it will require him to have immaculate dental hygiene along with daily "soaks" in fluoride trays--I had all my teeth pulled.  It can destroy the thyroid--I'm now on meds.  It can damage the carotid arteries--I take a daily low-dose aspirin.  It can affect swallowing, requiring speech therapy sometimes and occasionally even throat dilations--I get them three times a year, and was on a feeding tube for over a year.  It can cause weeks or months of pain, nausea, a year or more of fatigue, and large weight losses.  It can take away some or most saliva production and will mess with your sense of taste, but that usually comes back more or less the same.  He may have mental health issues as well--I did.  And chemo, which I didn't have, has its own set of side effects.

So would I do it again?  In a heartbeat!  Now four years out, I am able to do pretty much everything I could before.  I am restricted in eating, because of saliva loss and my dentures, but I always have liked soup!

Your husband is fortunate in having you as an advocate.  This will be rough on both of you, but there are many survivors here who can help you through it.

Susan

Hi Susan

Great advice as usual and very well put. I could not add anything to it

gary

RE: Looking For Advice

by Oscar1 on Tue Jan 20, 2015 06:27 PM

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Hi guys lord willing we are doing well. Am having trouble with food menu. Am restricted in swallowing saliva problem. Trying to eat a nutritional diet with this food consumption problem. Am lucky that can take in some foods with bottles of water handy but the easiest foods to consume have too many sugars and carbs. All suggestions please and thanks always for your help. Oscar
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