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#53674 07-07-2005 06:51 PM
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As many of you know, I just one week ago had my MRND, along with my RADICAL Tonsillectomy of the Right Tonsill.

Today, I am pain free and able to eat and drink @ 90% normal.

Seth & I walked a few miles along the ocean today with our Black Lab.

Had a great time...so glad to be getting back to "normal".

Still operating at about 90% of my previous energy levels -- which is something considering I lost 18 pounds in the last 8 days...

I have about 80% of the lateral and up/down mobility I had before the surgery, I can turn my head to the right and left nearly all the way.

The only real permanent cosmetic thing I am upset about is the fact that my normally generous smile looks so bad when I try to smile... :-(

My incision points look VERY good. Clean, well healing and no puss, blood or ooozing. They are looking like the scars may not be too bad.

I have a couple issues I wanted to confirm:

1) The right neck is TIGHT and still totally numb, the right cheek was 100% numb, but now 40%, the right shoulder & upper chest was 100% numb, and now is about 80%. My right ear remains 100% totally numb (except inside the ear canal which is normal, along with normal hearing)...

None of the numbness is 'inside'. It is just on the skin itself if that makes sense.

2) My chin and right jaw are slightly painful on pressure, like a bruise would feel

3) My neck at the base of the skull is very tight and painful, like I slept on it REAL wrong for a week or something...

4) I have a tingly feeling on my chin and incision points, like a 9 volt battery feels on your tongue...Plus occassionally, I feel like Seth sprayed me with a water bottle for a microsecond. In fact a couple of nights ago I hit him in my sleep thinking he was spritzing me with water while I was sleeping in the middle of the night.

5) My right neck and chin area is STILL HUGE!!! About 250% of pre-surgery size. Is there's anything I can do for this, please let me know.

6) My teeth and gums hurt a little, and I can only open my mouth about 75% of presurgery size. Is this normal?

That's it, just wanted to run this onto the board and see what everyone thinks.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53675 07-07-2005 07:13 PM
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All are things I had post surgery. Many get better over time, some take quite a bit of time. The swelling should go down, you can help it by lymphedema massage, lightly stroking the surface of your swollen skin towards the chest.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#53676 07-08-2005 04:19 AM
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Michael-
Looks like you are having pretty normal results and like Mark stated some areas will take more time to heal. After 3 years I still have numbness in neck and shoulder and the tingles down the arm. Keep working on opening your mouth. As you get into radiation and drinking your food or using a peg tube it will be even harder to open your mouth. Radiation really does a number to those muscles. Can't tell you how frustrating it is to finally be able to eat again and not be able to get it in there! Good luck on your journey! - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
#53677 07-08-2005 02:12 PM
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The biggest lesson Dad & I learned from surgery (like yours) and IMRT is PATIENCE. It's a hard lesson. Your symptoms are much like his were. He is better every day. He started PT 2 weeks after surgery for neck & shoulder (although ENT didn't think it "necessary", he did right the required order) at my insistence after reading posts here and he is soooo glad he did. He kept it up all through radiation, too, even as sore and tired as he was (and twice your age & suffering another type of cancer, too). Hang in there, kiddo. You can do this!


Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
#53678 07-08-2005 03:16 PM
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Michael, John had and still has [68 days post surgery] many of the symptoms you are experiencing. He was so swollen after sdurgery that some of our friends and employees did not recognize the pictures we sent them. But most of the swelling is gone now.He still had alot of numb areas. I was interested in your mentioning the tingle thing, as he is getting that in arms and also legs, for some reason. Like you heard above, Patience and fortitude. Joh finished his 30th and last rad today and came home and ate some pasta. laugh Spend more time sitting on your deck. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#53679 07-08-2005 04:31 PM
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Michael,

I had my MND two years ago and although it took almost 6 months, my smile did return to mormal, but I still have numbness in my ear lobe, my neck between the incision and my jaw line and my cheek just above my jaw line.

The tingles you feel are your nerves regenerating postoperatively and you will have that go on for a long time, at least I did. I just told myself that it meant something was coming back to life.

Really work on getting your jaw open by opening your mouth as much as you can, then inserting two fingers, one against your upper jaw and one against your lower jaw, and stretching it open. It will feel uncomfortable, but you want to keep stretching it so the inflammation does not settle in your jaw joint (TMJ). If your TMJ becomes stiff, it can be really difficult to get the movement back.

Barb


SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
#53680 07-09-2005 03:46 AM
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Amy,

congrats to you and Jon for finishing the radiation tx!

Did he have any chemo? I ask becuase you mentioned the nuropathy and I've heard that some chemo can sometimes cause this (is is usually temporary)...

Is the numbness/tingling painful..?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53681 07-09-2005 04:04 PM
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Hi Michael. John did not have chemo.I'm a little worried today because he thinks his hands are swollen [his wedding band is tight tonite], but he also slept most of the day today, so his circulation is probably slowed down also. I keep picturing you on your deck- I am an ocean freak- hope you are spending alot of time there. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#53682 07-09-2005 06:01 PM
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Michael, I had all the numbness you mentioned and today although the feelinging in those areas is a tad less intense than on the other side, if something itches, I scratch and I feel it. Took about six months to get that good, if I remember correctly. There is not an inch of that area that is not sensitive to even light touch. Just about the time you begin to get used to it, and you will, you will notice that it is improving. So don't worry. This, like so many other things, will most likely straighten out with time. As Bellarte so wisely says, patience is the name of this game.

Also, listen to Barb about keeping your mouth open. Do this during rad, after rad, and do it a lot. Nobody told me to do that, and it was a lot of work to get my mouth open wide post rad.

Finally, my smile returned to normal and yours will too.

Good questions. While I know you are extraordinary (grin), in this instance you are absolutely normal.

Joanna

#53683 07-15-2005 11:49 AM
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The "pins and needles" are still driving me MAD!!

They wake me up everynight a few times...

Any ideas?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53684 07-15-2005 12:36 PM
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Michael
My Mum suffers from Nuropathy and was prescribed.....Gabapentin (sp).
I don`t know if your Doctors would want you to take any medication at this point but it`s worth a phone call.
Cheers
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#53685 07-16-2005 12:17 PM
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Thanks Marica.

I appreciate the info.

The "pins and needles" are overwhelming today, and seem to be getting worse daily.

In fact, they are starting to inhibit my eating and speech, not only my sleeping.

I don't know what to do.

I'll ask the Dr Monday about the drug you mentioned.

Thanks again!!


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53686 07-16-2005 07:55 PM
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Michael, The pins and needles, my Dr. told me were signs new nerves were jumping in to compensate.S


ACC of soft palate diag. '90; neck resection '93,removal of soft palate, nodes, eustachian tube, rebuilt palate with arm tissue; 9 wks radiation; lung mets and positive nodes '05, no treatment possible.
#53687 07-16-2005 07:56 PM
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So it's a good thing, I was neck swollen for monthsw but you'd never know now. Th tingling and sharp electirc shocks are your nerves waking up. Welcome ghem. It's a good sign. smile
Ali


ACC of soft palate diag. '90; neck resection '93,removal of soft palate, nodes, eustachian tube, rebuilt palate with arm tissue; 9 wks radiation; lung mets and positive nodes '05, no treatment possible.
#53688 07-18-2005 03:55 AM
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The latest update is that the "tingles" have settled down about 30% over the last 48 hours and I seem to be able to manage them with a combination of meditation/visualization and meds.

Stress definiately makes them worse, so of course I am deeply afraid it's the cancer I'm feeling versus nerve regeneration.

Also, along those lines over the last couple of days my jaw and chin are starting to really hurt.

It feels like someone punched me (HARD) in the face.

My jaw line along the right side is tender and my chin (the tip) of all things is super sensitive, even the collar on my shirt is enough to send pain shivers down my neck.

It feels like the pain is inside my right jaw bone, under my teeth, is this the perinural involvement from the path reports?

It's been 18 days since surgery, is it possible to still have this kind of pain from that?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53689 07-18-2005 08:29 AM
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This pain could also be because your nerves (including pain nerves) are coming back to life. I do rememebr having more soreness a few weeks after surgery than what I had right after. Just wait tilo radiation--gets even more wierd then! As for perineural involvement, I think all that means is a nerve was running next to the tumor--as far as I know it doesn't directly relate to pain.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#53690 07-19-2005 03:53 AM
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Thanks Nelie.

I got back LATE last night (1:30 AM) from Stanford. (Had to wait there 3 hours to see the Dr, after driving 5 through horrible traffic) (Whew! Had to vent, sorry! smile

Anyway, the 2nd surgeon there (not mine since he's on a 3 month + sabatical(sp?)...), said that everything looks and sounds "normal", what he would expect after the surgery.

He was very intrigued by the visits to other CCC's I've had and flipped on the issues of surgery as a 1st line.

He basically lied to us saying that during tumor board he told my family and me that he would recommend Rad/chemo first instead of surgery!

Anyway, I know everyone's sick of hearing about this, so I'll drop it. Truth is, the surgery turned out better than I thought anyway, I don't look like the monster from the deep and the side-effects so far are "manageable"...Like everyone say's the surgery is a cake walk next to chemo/radiation :-P

The swelling is down considerably on the Left side, (maybe 20% above the presurgery size), and the incisions look incredible. Very clean, very nicely healing, and I'm overall happy to have "gotten it out".

The nerve "tingles" didn't alarm the Dr. He seemed disinterested in this side effect so I guess I'm on my own to deal with it. At least, like you said, it isn't a bad sign.

We reviewed my path results, and nothing new there either.

I asked him about his take on Erbitux, and he nearly laughed, stating that it is a joke more or less.

I asked him about eating right, exercising, or taking any vitamins, minerals or nutritional suppliments, visualization, meditation or group therapy, and he dismissed it all saying it is just a bunch of hocus pocus (sp?). So, that gives me a baseline into his belief system. He is obviously wrong about the adjunctive therapies, since more than a couple of them have proven to help, if with nothing else, at least side effects of treatment.

He thought that it was crazy for me to travel to MDAnderson or Sloan, stating that "any" of the top 50 in the country will give me the exact levels of treatment, care and outcome. He said that Stanford would be best.

I asked him why different institutions have such wildly different survival ratings, and he said that they aren't different "just one patient can skew the numbers, and it's not significant..." (I said, "Unless you're that 'one patient'...")

All in all, it was worth the 9 hours of travel just to have him say that the tonsil bed looks normal, and he doesn't see anything that would indicate the other surgeon missed anything or that it's already recurred. (I know that was irrational on my part, but hey, I've got cancer, so I'm entitled to be a little irrational :0 )

So, now's it's back to making my decision on treatment.

I'm still scheduled for the dental work at UCSF this week, and then I'll healup and head to Houston or NY.

How are you doing today with the breast cancer, I haven't seen much online about it. Do they think it's somehow related to the SCC? Or maybe the rads you received from the treatment?

How are you feeling just 6 or 7 weeks since chemo?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53691 07-19-2005 06:43 AM
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Hey Michael, I posted on your other topic about the surgery vs. rad first issue. I don't think it's as clear cut as you have the impression it is from your two visits. But as you said, it's neither here nor there since you already had the surgery at this point.

Thank you for asking about the breat cancer, I haven't talked much about it here in part because, thank God, it has an excellent prognosis--it is Stage I and a very nonaggressive tumor as breast cancers go.

In January, two days after I got the biopsy results and learning I had tongue cancer, I was scheduled for a regular mammogram. Imagine my surprise (and deer in the headlights look, I'm sure) when the radiologist told me I needed a biopsy on somehting the mammogram turned up. I managed to squeeze in the biopsy before my tongue and neck surgery (it was stereotactic biopsy which requires lying compltely still face DOWN for about 1/2 an hour--would have been pretty diffcilt after surgery), and got the nwws it was indeed breast cancer right after the surgery. Its completely uinrelayted to the mouth cancer.

So two weeks later I had a lumpectomy and sentinal node removal--and in that same surgery (and I'm pretty sure this could only happen at a small hosptial with a single tumor board for all cancers that meets weekly) my ENT came back in and took a little more of my tongue to be sure the margins were clean from the first surgery because one had been very close(they turned out to be clean --no more cancer found there).

I got a post-surgical infection (very unusual apparently but it had to happen to me) from the lumpectomy and also at the node site that had to be sdrained and then wet-to-dry packed daily for over a month in order to heal. This is one of the reasons my rad and chemo didn't start as soon as I would have liked. They wouldn't do the chemo when they thought the breast/node wound good get infected again.

So as soon as that was healed I started rad and once I heal from this a little more I have to go back in for rad to the breast. Probably late August or early Septemeber that wil start. Fortuntely, a couple of docs who I trust have told me the delay in rad treatment for that cancer should not prove to be a problem at all. It doesn't have the same urgency as oral cancer. And it will seem like a walk in the park after the oral rad! With the lumpectomy, node removal and rad as well as Tamoxifen, I only have a 5% or less chance of recurrence for that cancer. I just wish the stats were so good for the oral cancer!

Finding out I had two cancers at once was pretty overwhelming for a while but the rbeast tumor was small and deep--not one I felt on my self-exams or one that even my surgeon could feel. I keep thinking that if I *hadn't* gone for that mammogram I would have probably gotten healed from the rad. for the mouth and just begun to feel like the ordeal was over before the rbeast tumor got boig enough to feel--and by that time it would no longer have been a stage I cancer most likely but soemthing more scary. So I'm really glad that I went for that mammogram and caught it early.

As for how I'm feeling now, I have a topic in the post-treatment section on mouth gunk where I've been giving some updates.

Good luck with the oral surgery and the decision on treatment. I'm sure you'll keep us updated here.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Michael,

Who are these clowns at Stanford? He operates on you and then goes on a 3 month sabatical? Did he tell you he was going to do that? Then they change their mind on surgery first or not? As far as I know, vitamins are out while you have cancer so not telling you that is another problem. And to make a statement that all CCC centers are the same is absurd. Not all drs in the best center are the same.

When I had my first MRND, I had a lot of tingling up to my ear for the first several months. I also developed a nueroma, a nerve that didn't go back into the casing properly. It didn't bother me unless someone touched it and then you had to scape me off the ceiling. It took five years, but it finally got to the point where it doesn't bother me if it is touched. Second neck dissection I had no tingling, no pain, nothing. Maybe a better surgeon second time. I don't know. Hopefully yours will go away soon.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#53693 07-19-2005 08:40 AM
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Not all vitamins are out with cancer, but you can't take them willy-nilly There is evidence that taking free-radical-scavenging anti-oxidants (Vitamin E, especially) should not be done when undergoing radiation as the production of free radicals and the damage they cause to the cancer cell, (which it cannot easily repair compared to a healthy cell) is part of your treatment and these anti-oxidants can reduce the impact.

However there are other studies which show improved survival in patients who take anti-oxidants during treatment. Hmmmm...

And the free-radical damage to those healthy cells may also lead to other malignancies down the road (e.g. doubling of risk of bladder cancer in parients undergoing brachytherapy for prostate cancer). Gues there's no free lunch!

There are some vitamins that seem to be related to increased cancer risk, such as beta-carotene (this was found in a NCI trial looking at lung cancer). However vitamin D has been related to a lowered risk of cancer.

It is probably a good idea to run all your supplements (vitamins, neutraceuticals, etc.) by your doctor before starting treatment.

Gail Mackiernan


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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I was told pretty clearly by my medical oncologist that anything that was thoguht to have antioxidant properties was not something I should take during rad and chemo. beofre rad and chemo it was fine. The reason he gave was pretty simple. There's not enough good experiemntal research to show one way or the other what effect most of these vitamins/supplements have during treatment but the theory about how anioxidents work in gerneal is that they slow or stop the growth of cancer cells. However, both radaition and chemo are effective at killing more cancer cells than helathy cells precisely *because* cancer cells tend to grow much faster (and therefor are less resistant to damage from rad or chemo) than healthy cells. So what you may do by taking these things udring treatment is making the treatment less effective at killing the caner cells more so than regular cells.

I've dpone a lot of reading on a lot of supplements but that simplpe explanation made a lot of sense to me. Of course now I'm back to putting whatever supplements and vitamins I can get down my tube into my body because now is time for healing and there's researc that at least strngly suggests they help with that.

Oh, except not Vitamin E which has been shown to cause a higher liklihood of recurrence (and that finding scares me because who knows about some of this other stuff).


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#53695 07-19-2005 10:30 AM
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Gale I thought betra-carotene was only found to be related to an increased caner risk for people who smoked? Otherwise it was related to a reduced risk. Am I recalling that research wrong?


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#53696 07-19-2005 12:10 PM
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You guys have hijacked my thread with the VERY controversial and deep black hole of VITAMINS and their effect on Cancer and it's treatments!

:-)

Actually, we could have an entire website dedicated just to this very HOT TOPIC.

The best, most balanced source, I've found for the answer to these questions is the following:

http://www.mskcc.org/mskcc/html/11570.cfm

It seems to have objective, fair and reasoned information for most vitamins, minerals and suppliments.

As far as the tingles, I think I finally found the right combination of things to reduce them by about 90%...Unless of course they are just resolving on their own..? I will take a "pill holiday" soon and see. I do know that just about ANY sugar makes them go crazy!

What I take now is: Loratadine (10 mg) 1x daily
Zinc (30 mg) 2x daily with food, and Artemisinin (100 mg) 2x daily.

Who knows???


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53697 07-19-2005 01:55 PM
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Yes, Nelie is right, beta-carotene (in the NCI trial) caused more cancer in smokers. But there is enough additional evidence of harm that the Dr. Charles Myers, a top medical oncologist dealing with prostate cancer, strongly advises his patients not to take it. I will go through his Forum newsletters (but not tonight) and get the references -- all his recommendations pro and con are based on clinical studies, not anecdote.

The reason cancer cells are more vulnerable to radiation is that they do not function normally or efficiently to heal DNA damage -- the latter enhanced by free radicals, thus the advice to avoid chemicals which (in turn) might scavenge these free radicals and "protect" the cancer cells. However free radicals can also cause normal cells to become abnormal, by damaging their DNA.

In other words, not a real simple picture!

There are studies which have shown significantly decreased mucositis in patients treated with topical Vitamin E (but not ingested) and also, vitamin E is part of a trial which has found a much improved survival and reduced recurrence in HNC patients treated post-radiation with interferon, retinoin (a form of vitamin A ) and plain old alpha-tocopherol (Seixas-Silva et al, 2005, Arch. Otolar. Head Neck Surgery 131 (4). But this is post-treatment.

Gail Mackiernan


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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May I suggest that you continue this discussion in the "Adjunctive Therapy Forum" The subject is a good one but it belongs there.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#53699 07-19-2005 04:41 PM
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[with apologies to Michael's thread]I guess I'll pitch John's Centrum Silver because I understood maybe 1\100 of what was posted above. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
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Good point Mark and sorry to be part of the hijacking!

Gale, you may want to read some of the recent topics in the adjunctive therapy forum discussing Vit. E. A very recent study that is summarized there as well as on the part of this OCF website that summarizes research showed taking E actually increased the likelihood of recurrence with head and neck cancers. I remember this distinctly because I was taking Vit E when I read that and had just ordered two more bottles!

Its also a good example of how complex all this stuff is in terms of what helps and what does not.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#53701 07-19-2005 05:03 PM
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Here's the study I think you (Gail) might have been talking about.

http://www.ncbi.nlm.nih.gov/entrez/...amp;list_uids=15054734&dopt=Citation

The conclusion was that Vitamin E showed a reduction in mucositis in patients with oral cancer in some cases.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53702 07-20-2005 04:36 AM
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Hi Nelie --

I have read the paper that reports the negative impacts of alpha-tocopherol and it is certainly a cause for concern -- although other papers contradict it. (So what else is new? -- I'm a scientist, it happens all the time...)

BUT -- a conservative approach is best when dealing with such a potentially serious issue and you were right to have stopped your Vitamin E intake during treatment.

Interestingly enough, the prostate cancer experts say that it is the gamma isomer, not the alpha, that confers anti-prostate cancer protection. That is, taking alpha-E isn't doing much good in any case (for PC, at least).

The use of alpha-E as a topical application of the mouth during radiotherapy (not swallowed, just as a coating) was shown in one study to significantly reduce severity and duration of mucositis compared to a placebo (Head and Neck ,2004;26:313


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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[quote] Vitamin E May Increase the Risk of New Cancer


Date
April 12, 2005


Details

According to a new study reported in the Journal of the National Cancer Institute, supplementation with Vitamin E increases the risk of developing a new cancer. The study involved 540 patients with head and neck cancers who were given either 400 IU/day of Vitamin E or placebo starting on the first day of radiation therapy for three years. Researchers found that patients who received vitamin E had a higher rate of second primary cancer compared to those on placebo.

[/quote]Where can I get a bottle of this new drug called Placebo..???

:p


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53704 07-20-2005 02:58 PM
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Any candy store.

The odds were better with the placebo with Iressa as well.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#53705 07-20-2005 03:10 PM
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Michael, The Cancer Center my husband is using (ranked #13) opened up a Complementary Medicine department this year. We visited after surgery and before radiation and he hooked up with their acupuncturist. She is an MD trained in acupuncture medicine in China and an asst. prof at our local university. She ran a nerve conduction test of some sort after his MRND and has since treated him for pain, nausea, anxiety, and I'm not sure what else. He seemed to have a relatively easy time through radiation (he didn't do chemo), had the peg but didn't use it, took pain meds (but according to drs, less than others), etc. One week, he didn't go and felt he noticed a big difference. Another week, she changed her treatment to skip the anxiety/nausea part, and within a week he was experiencing upset stomach. The interesting thing was he didn't know she was treating him for the digestive system/nausea thing at the time. He also ordered some auto-hypnosis tapes from tranceformation.com to relieve stress and promote healing. He found this very helpful. He also ordered a Guided Imagery CD set (Healing Cancer From Within and another). Again he found this helped him as well. The thing that has intrigued me about this is that it would be very much like me to try these kinds of things - but very much unlike him. And yet, all of these complementary approaches have seemed to not only help but give him comfort throughout this. I also enlisted a good friend to be his "prayer warrior" and she sent him encouraging e-mails and prayers daily. I think if nothing else, being able to relieve stress and calm one's mind is a huge boon in fighting this disease. As I heard my husband joke to a friend of his a few months ago regarding the fear one feels - "A coward dies many deaths - a brave man but one." So true, fear is powerful and anything one can do to fight it off or stare it down is a good thing.

I wish you the best of luck in finding the right solutions for yourself.


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
#53706 07-20-2005 06:29 PM
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We covered this so called "study" earlier. The group was small and at the end of the 3 year period the overall survival was the same as the control group. In other words the vitamin E did not produce lower long term survival. Damn statistics and news reporters that can't think. You have to read more than several reports and "studies" before you can begin to draw a conclusion.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#53707 07-20-2005 06:57 PM
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cclark:

Great info!! I KNOW there's something to all of the stuff you mentioned, and my attitude lately has been..."If it doesn't hurt me, I'll try it"...So, I won't be trying Vitamin E :-)

Thanks for the great references.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53708 07-21-2005 03:20 AM
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The problem with the vitamin E study (which showed no benefit, and in fact, a detrimental impact, of the vitamin) was that the patients were also given beta-carotene for a while. This was stopped but reviewers noted that the B-carotene (which has been shown to increase lung cancer risk of smokers in a large NCI trial) compromised interpretation of the results. The fact that a lot of recurrences occured in the lungs and trachea seems to indicate that the HNC patients may also have been smokers (which do constitutute the great majority of oral cancer cases).

Ideally this study should be repeated sans the B-carotene but that would be unethical based on the first study's results.

Btw, there are other studies which show a benefit to Vitamin E in chemotherapy and no difference tumor control and survival (e.g. J. Clin. Oncol. 2003, 21 (5)).

This is NOT a recommendation to go out a take Vitamin E, it is just a caution not to base all one's decisions on the results of any single scientific study. A certain amount of informed skepticism is always in order...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#53709 07-21-2005 12:37 PM
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Michael,

Here's another you might enjoy - sound therapy. Check out the CD "Self-Healing with Sound and Music" by Andrew Weil/Kimba Arem. Great music, too (or at least we thought so). We've both used this as a stress and anxiety buster over the past months. In fact I listened to it sitting in the waiting area during my husband's surgery last February. It really helped. He likes to use it when he's particularly stressed over something.


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
#53710 07-21-2005 01:59 PM
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Great Idea!

Plus, the RO's I've talked to said they will play any CD I bring in for me during my rad tx.

I'll get one! Thanks! :-)


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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