Hello from Tom in northern CA. As you can surmise from my signature, I had SCC (HPV 16+) in my right tonsil and spread to a single lymph node. I am being treated by a major CA HMO where my Medicare is used as well. I have felt from the start that I was getting superior care through this HMO. They have been right on it and no time was wasted.

I have been lucky from the start as first symptoms was a sore and persistent throat in early Dec. 13, which went away; however, soon after I mentioned it to my dental hygienist who immediately alerted my dentist. When she noticed the unilateral nature of the swelling, my dentist became quite alarmed and insisted I get immediate screening. The head and neck guy thought cancer for sure and the biopsy of the tonsil proved out. 1/09/2014

When I read some of the cases on this site, I do feel lucky as the HPV involvement augurs for a good outcome and my case was not too far spread. I will stay positive that the cancer is now gone for good.

A week later (scans and MRI performed in the interim) I had to travel to a center for a cancer panel where I met with a team and was told that the percentages were good for my situation as of the HPV involvement. I was very impressed with the surgeon and qualified for surgery, so decided to have the surgeries done (TORS, Neck Dissection). Yowsah! Ordeals for sure, but thanks to my love, I survived them in good spirit. Learned I can tolerate the opiates, but they really throw me off and constipate me totally.

After a suitable healing period I was on to the next and more difficult stage of RAD and Chemo: RAD x 30, Cisplatin twice, on first day and half way through RAD. Again I had good fortune with the RAD as the surgeries allowed for a reduced regimen both in duration and RAD levels.

Again I was lucky, as a study that was presented at the 2014 Multidisciplinary Head and Neck Cancer Symposium was released around this time and I was so fortunate to find it. It concluded that �Unilateral Radiation Therapy for Advanced Stage Tonsil Cancer Results in Favorable Outcomes�. I sent the study to all my doctors and really lobbied my RO for unilateral treatment. He agreed and in our next meeting urged me not to get the feeding tube which prior he was an advocate for. Unilateral radiation reduced the impacts enough for me to keep eating throughout. I did lose some weight, mostly from the surgeries, but now feel I am at an ideal weight.

Pain. I did not use any pain meds after the surgeries with the exception of Cannabis. I ate half a cookie every morning and still continue to do so. Several of my docs hinted or came right out and recommended Cannabis and my surgeon wrote the CA RX. For me, it is the best for keeping pain in the distance and stellar for managing the frequent nausea and butterfly stomach.

Current hurdles: rehab ROM in right shoulder; eating/taste; dry mouth; neck stiffness and pain from the dissection; fatigue; remaining positive, one day at a time.

I will probably address these in other topic forums and ask for advice.

One comment I would make here. I find the necessary evil of RAD and Chemo to be very destructive and a horrible torture for anyone to endure. My plan is to go through this protocol anyway as a prophylactic when I am sufficiently healed from this current regimen.

Almost 5 weeks since last RAD. Feeling a bit better now and then and now and then a bit worse. Generally trending to better. Starting to get some yard work in, hooray!

Thank you to all the caring and compassionate people who read and comment on these forums.

Welcome to OCF! This site is a great resource that you can learn tons of info about your illness. We are here to help with info and support.

As you are 5 weeks post rads, you probably have seen the worst of things. Recovery can be a long, frustrating road but in time you will get much better than your current status. It can be a full 2 years to reach a complete recovery with taste and rebuilding your body. Your intake is the key to getting better. Every day push to take in 2500+ calories and 48-64 oz of water. After what you have been thru it takes alot to rebuild your cancer's damage. Your sense of taste will slowly return, this seems to be everyones biggest hurdle to get past. In time it will improve.

Best wishes with your continued recovery!

First off a HUGE CONGRATS for completing that Tx, as if you had a choice ....

You will continue to have bad days mixed in with good days but slowly the good days will win out. My taste and saliva, which I feel go hand n hand, returned in spurts. First noticeable improvement at 4 months PT; some more at 5 months; a huge improvement at 14 months and then a final bit at 24 months.

First year of "recovery" is the obviously worse but soon for you it will be all good, just be patient and do continue to consume at least 3000 cals a day. I did that and I didn't gain a pound my first year so it tells me that there's a lot of cellular recovery going on.

In my original post I had a web link redacted by admin. So ignore this paragraph:

One comment I would make here. I find the necessary evil of RAD and Chemo to be very destructive and a horrible torture for anyone to endure. My plan is to go through this protocol anyway as a prophylactic when I am sufficiently healed from this current regimen.

HI TomCA,

First, congratulations on getting through your treatments. MY observation is that the way that radiation and chemo (namely Cisplatin) affects different people differently. Your reaction sounds like mine, but "horrible torture" is at least a couple numbers up the scale for me. On the other hand, I sure won't quibble about the toll it takes on the body.

I don't mean for any of what I say to be taken as anything but a simple "Here's another perspective;" and certainly not to downgrade, belittle or dismiss anything you've said. Each of us is unique, each of our experiences is unique to us alone.

I'm stage IVc and am like my famous ancestor, Daniel Boone Barton. He was famous because in the late 1700s, he once fought and killed 6 bears with his bare hands.

Alas, he was fighting with 7 bears at the time... But I digress.

Counting the original dx, I've on my 7th occurrence, and the last 6 (recurrences) have all been distant Mets.

We haven't started on #7 yet because of some body parts that aren't cooperating. Saturday before last, I developed a inlingual hernia from extremely violent "dry heaves" that (it turns out) were (are, had one last night) the byproduct of neuropathy my colon, which has quit squeezing the contents on down the line.

I can't get that taken care of until I get the hernia fixed and my first consult with a cutter is tomorrow. No idea when he'll do the simple repair, but soon would be an excellent choice from my perspective.

Once the hernia is repaired, the colon can be addressed, but that will depend on how much the latest (#7)
lymph node has grown in the interim. It's all good, these things all work themselves out in the end.

The current plan is 3 more weeks of "beam" radiation for good ol' #7, the a wait until I'm not too hot for a valid PET, and re-evaluate at that point.

I've had my "pain and suffering" scale re-calibrated a couple of times; recovering from getting gut shot is my current 10) and surviving a Flail Chest, and those were over 40 years ago.

But there was a lengthy period during my initial Cancer treatments where I couldn't keep anything in my stomach and I lost 38 lbs, mostly solid muscle (now I look more like a Bataan death march survivor.) It's questionable whether I would have survived without Cannabis to give me a chance to hold something down long enough to benefit from it.

Honestly, I'd give the initial treatments a solid 7, maybe an 8; packing both lobes of my liver with radioactive microspheres a 6 or a 7, and everything else pretty much a "walk in the park."

In fact, I recently downgraded all of my subsequent radiation when I learned that the constant low-level nausea that I've had for the past year or so is really related to my obstructed colon, and not directly a result of the various rads.

Well, that's enough words to keep the board functioning smoothly, so I'll quit and save some for another time.

Bart

Welcome TomCA to NOPEG, I mean OCF. :-)

You been through the worst and should be feeling at least some good days mixed with not so good days. In short order, you will be feeling better and better.

Hang around, read a lot, and ask if you are not sure.

fyi - I'm in NorCal too. Would this big HMO also have some history with ship building?

Not sure about the ship building, but think German emperor and you will get the drift.

Bart,

My heart goes out to you. I don't know how you do it. I don't know if I could face what you have been/are going through. It is a testament that you can keep a good attitude and stay with the battle. Best to you through all this.

Tom

Thanks Tom, I'm cool with the whole bit.

The thing about suffering is that it takes place in the mind, and if you don't get into the "Woe is me"s, and hold on to it and nurse it (the suffering,) when the cause of the suffering (the damage to the physical source) passes, so does the suffering. Pain always passes and is behind you when it does, IF ONE DOES NOT ATTACH TO IT!

That's what I'm a living testament to; proof that if you don't let it become what it is not, the most severe and horrific pain and trauma are merely rocks in the path. Not a continual suffering, just another set of experiences to talk about over a cold beverage.

Anyone can do this, but it has to be taken seriously and you have to believe in yourself. Beyond that, it's duck soup; you just need to know the technique, and that's why I write about it. Sort of "See, I did it, anybody can."

But thanks for the compassion in your note, I truly appreciate that.

Bart

Hello Tom, and welcome to the family; it's good to have another survivor/fighter in our midst.

Your story is basically a carbon copy of mine albeit a few months later. Only two differences 1) my state doesn't have a medical cannabis law. You are the first on the forum I've read about that had the option available. 2) I had no lymph node involvement so no chemo. Lots here on the forum thought I should have chemo anyway, but my docs said nope.

Back in your first post you mention current problem rehab ROM in right shoulder. I presume that means range of motion, if not please clarify. I didn't have any shoulder problems from disease or treatment, so I'm a little curious about yours.

You mentioned you're about 5 weeks since last rads and the symptoms you are having at this point. I am now 5 months post rads and about the only symptoms left are really thick sinus drainage that sticks in upper throat (above and behind uvula). It feels like dried glue. It happens most notably at night while sleeping. I use a sinus irrigator from NeilMed and that loosens it enough to clear it. I also use a bedside humidifier at night while sleeping.

Most of my taste has returned, even the savory part of the taste spectrum (steak & cheeseburgers) which many told me would be the last to return. Sadly the only thing I've noticed that still tastes bad is Blue Bell ice cream Moolineum Crunch (which before cancer I considered a real treat).

Outside of that, no post treatment symptoms remain. I lost 42 pounds during treatment and have kept 38 of them off.

Keep fighting, it gets better with time.

Tony

Hi Tony,

I had a neck dissection performed to remove lymph nodes. During this process, the nerve that controls the right arm was largely dissected away. As a result, ROM (as you guessed) is shot. I can only lift my right arm to about 90 degrees and there is a lot of pain, especially during the PT exercises.

My weight was pretty good to begin with and only lost 10-15 pounds post surgery. I stayed there (and am still there) during RAD. Pretty ideal weight for someone my age.

Regards,

Tom

Hey this is very normal - not sure of it's the nerve or the muscle they cut but regardless you can get your ROM back, physio will help. Been there done that and I'm at 98% perfect now. It took a few months - my left arm and shoulder are only slightly weaker and it's barely noticeable, hugs

Even if the nerve is cut or other things permanently reduce your ROM, there are many adaptive techniques to do about anything you need to do. For many, radiation cuts of nerve and blood flow to muscles that eventually atrophy. The trapezius is one of the first and that controls the pass off from about 50-90 degrees when lifting the arm. Also, some get scapular rotation muscle atrophy and that's the other group of muscles used to lift the arm above straight out.

I lost the ROM in both arms around year 5 but I still try to do jumping jacks. It makes no sense considering how light the arm really is and how little extra force is required to get it moving. If you lay on your back and can get full ROM, it may be somewhat limited, even after PT. I spent a few minutes almost every day for 18 months to do a jumping Jack and it isn't pretty and it wasn't sustainable for long.

There are actually a series of exercises that really do help. I do believe it depends on your surgeon and what they do, but I too couldn't lift my arm past my waist. Now I really do have full range of motion, and that is after rads too. I was told to do passive exercises first. Using a broom just to get the arm used to that movement again then slowly I gained strength and could do it on my own. I did them twice to three times daily while walking my dog (I used his chuck it instead of a broom if I was at the park with him)

Don't give up. Some people do have a more difficult time of it but you'll never know the most you're capable of if you don't try.

Hugs.

Hi Tom,

About that PT, my observation with respect to the pain , is that PT has always been very painful. But pain is transient and gone when whatever is causing it stops banging on it.

When my chest was crushed, one of the strange side-effects was that my right shoulder went "dark" on the nerve-net. I could not raise it or bend it. And being in an army hospital at the time, I had to shave daily so I ended up holding the razor in my right hand, and moving it around my face with my left.

I started PT for my right arm/shoulder very soon after, and in a few weeks, my arm/shoulder was working again. That PT was excruciatingly painful, but it got better and restored the arm. Please don't get tempted to short the PT just to avoid the transient pain lest you turn a transient disfuncton into a permanent one. I know a LOT of people who do/have done EXACTLY that.

An ironic aside; The PT team consisted of a Nurse and a senior NCO. The NCO had a very pronounced condition called "Drop Foot," in which nerve damage makes the foot go off-net. That prevents the the Achilles tendon from being exercised, and it shortens under the normal tension it operates under.

PT for such a condition, like all PT I've encountered, is quite painful, and this NCO apparently decided to avoid it. Bad strategic move, I'd say.

I walked out of the hospital the next day, 37 days after being admitted DoA. And I was medically cleared to go back to jumping out of airplanes 32 days later.

[Caveat and disclaimer: The following information is from Jan, '67. Medical advances since then MAY have made some of it obsolete.]

Nerves are a bit tricky. Just before I returned to Vietnam I had a very skilled nerve specialist run a series of tests on me to determine the state and prognosis for my nerve-healing. He told me that most cut nerves do regenerate by producing new growth of the nerve cell, from the cut to the connection point with the destination and do so at the approximate rate of 1.2 cm/month.

Measure the distance (in cm) from the cut to the muscle that is off-net, divide by 1.2 and you know APPROXIMATELY how long it will take to complete the healing. Also, if significantly more time goes by and the muscle still has not recovered function, it's likely that the nerve involved is not going to regenerate.

Nerves damaged at the connection with the spinal cord (I have some of those) do not regenerate.