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#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"
#53692 07-19-2005 07:12 AM
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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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