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#187841 01-24-2015 11:59 AM
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poiuyt Offline OP
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I've been a long-time poster and mod on forums/message boards for other topics but never joined one for cancer patients/survivors/family, probably because I had been cancer-free for a number of years. Or whatever dumb reason it was. crazy

Now that my doctors have told me my next-to-latest cancer is "incurable", I've been thinking about this experience a lot more and I wanted to hang out with some people who have shared many of the same experiences.

So, "Hi there!" to all and thanks to all for making this site the great site that it is. smile

Last edited by poiuyt; 01-24-2015 12:00 PM.

Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
poiuyt #187843 01-24-2015 12:55 PM
Joined: Mar 2011
Posts: 1,024
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Hello and welcome. I am sorry that you need to join us, however I want to say that this is a fabulous place for support and Information.
As you well know radiation makes for a tough time. Christine will be along shortly to tell you to eat up and give you pointers on nutrition and hydration.
I hope you have Family support to help you through this.
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
poiuyt #187844 01-24-2015 01:54 PM
Joined: Jan 2015
Posts: 37
poiuyt Offline OP
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Thanks very much for the kind words, Tammy. This does indeed look like a fabulous place for support and info. Glad I finally looked for a good place like this and that I found this site. smile

Looking forward to reading Christine's (and anyone else's too) pointers on nutrition. I need to do a better job on that this time.


Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
poiuyt #187845 01-24-2015 03:52 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Welcome to OCF! Im so sorry to read of your diagnosis. You have found a great place to bond with others who truly understand where you are coming from and how hard everything is. We get you in ways others cant. We have been down the same paths and hopefully will be able to advise you to avoid the pitfalls we have been thru.

This may sound silly but I was wondering if you have gone for a second or even third opinion? If not, please consider going to one of the countries top Comprehensive Cancer Centers (CCC's). I believe Vanderbilt is in Nashville. There are many farther away that have housing available for very little or no cost. Cancer patients can eve get complimentary airline transportation. I know traveling to get treated isnt always an option for everyone. But if it is something you could do, at least give it a shot. I almost packed it in and quit in 2009 before the wonderful members of this group convinced me that I couldnt quit before I tried. I guess thats why Im always one to suggest pushing for other opinions from top CCCs. Plus CCCs have been scientifically proven to have better outcomes, especially with complicated cases such as yours.

As far as intake goes, push yourself to take in a minimum of 2500 calories and 48-64 oz of water every single day. Many (including myself) struggle with their intake. The more you can take in the easier treatments are.

Feel free to ask questions. Read and educate yourself. There are 10s of thousands of threads on all kinds of topics here on the forum. Also the main OCF pages have tons of important, helpful info.

Best wishes!





Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
poiuyt #187847 01-24-2015 06:13 PM
Joined: Jan 2015
Posts: 37
poiuyt Offline OP
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Hi Christine, thanks for the welcome and the advice. smile

Hey, I don't feel getting a second/third opinion is silly at all, and I agree with you it's something everyone should do. For the last year, I've been going to two hospitals (Vanderbilt is one of them) and my cases have been presented to tumor boards at both of them. I have a good confidence level in my doctors and feel fortunate to get the quality of care that I have.

I appreciate the reminder to eat and hydrate well, especially before radiation.

Glad to see that you seem to be doing well after all you've been through. Makes my case seem not quite so difficult.



Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
poiuyt #187866 01-25-2015 02:33 PM
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Welcome to OCF. You certainly deserve automatic promotion to old timer and battle field test warrior and survivor. You have experienced cancer diagnosis and treatment and survivorship more than most here. Great to have so much added experience and wisdom added to the forum.

Good luck on the treatments.

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
poiuyt #187876 01-25-2015 08:59 PM
Joined: Oct 2006
Posts: 383
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Posts: 383
Welcome to OCF Andrew! I've already had the pleasure of reading your input on Erbitux, so "Thank You" and I look forward to continuing to grow, learn, and share with you and the rest of the group!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

poiuyt #187939 01-27-2015 08:40 AM
Joined: Dec 2010
Posts: 5,260
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"poiuyt" I get that you have had many encounters with this cancer, but I don't like drs who say it's incurable. In fact the cancer you were deemed incurable with is usually the most treatable type of OC - though it generally requires more rads, which you had once and it seems are going through again. Palate cancer is also usually quite treatable.

Are you being seen at a CCC?
You should touch base with Paul B. His journey sounds similar to yours in that it sounds almost like a chronic situation.

Hugs and welcome and I am sure you have a lot to contribute.



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
poiuyt #187976 01-28-2015 10:22 AM
Joined: Jan 2015
Posts: 37
poiuyt Offline OP
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Cheryl, thanks very much for your post, hugs and welcome. I hear you about the docs saying "incurable". Having said that, the two who did followed up by saying that it was survivable.

Yep, I'm being seen at a CCC (Vanderbilt). Over the last 17 years, I've been getting most of my care at the Veterans Hospital, which is staffed by docs from Vandy. Matter of fact, the VA hospital is right next door to Vandy and even has a bridgeway-type thing that connects the two facilities. Three of my VA docs are also assistant professors at Vandy (ENT attending, CO attending, and my pulmonologist) so I'm getting quality care from the VA.

The VA doesn't do rads so I'm going to Vandy for it while getting the chemo at the VA. The RO I have at Vandy is also an assistant prof there and I also went for a second opinion on surgery to another Vandy prof who specializes in ENT reconstructive surgery. Neither she nor the VA ENT attending want to do surgery.

Back to the "incurable" part, we are going for curative rads instead of palliative, which was the RO's first recommendation. There are well known risks involved, which I've discussed with my docs and family, and it's the course I've been favoring for a while.

One thing I didn't mention previously was that I also have two presumed cancers in my lungs. They won't say either is definitely cancer because they don't have tissue samples that say so, so they can only say "presumed". One is right upper lobe and showed up on PET and CT scans shortly after the BOT/pharynx/oropharynx biopsy and it responded to chemo, so is presumed metastatic. The other is left upper lobe and was there before the BOT ca and did not respond to chemo, so it's presumed to be another primary cancer. Anyway, those two lung nodules have complicated things for everyone involved and they're the main reason none of the docs want to go to full curative mode for the OSCC. They're afraid if they do, they will also be compromising my body to attack from the lung cancers as well as any other metastases that pop up or even to more new primaries, which wouldn't be a surprise given my history and my family's history of cancer.

My cases have been presented to the VA head/neck tumor board, the VA chest/lung/pulmonary tumor board, and the Vandy head/neck tumor board. I have a good comfort level knowing that my cases have been reviewed by three multidisciplinary panels of experts in their fields.

I think you are right about the palate ca, the Vandy ENT said the palate usually responds well to rads, which the RO agreed with, so we'll be targeting the palate along with the other head & neck areas. We won't be doing the lungs at this time though.

Guess I need to update my sig to reflect the lungs, just in case anyone is interested in seeing more of the full picture.

Thanks again for your input, I really appreciate it. smile Hugs and best wishes to you.

Edit: forgot to mention that the latest tumor board was split 50/50 on whether to pursue curative rads or palliative rads. The RO said there was much discussion of the pros and cons of each type of rads (surgery deemed not a good option, chemo already underway and rads would be concurrent with them). I've been seeing him over the course of the last year, about 4 or 5 times so far, and he was initially hesitant to do rads at all, since the tissues there had already been zapped after my first cancer. Then he gradually was moved to the stance of doing palliative and now he is willing to do curative. He said a doc whose opinion he most highly respects and has been a mentor of sorts to him, was one of the tumor board docs in favor of doing curative rads. It's what I have wanted to do as well, so we're going that route. smile

Last edited by poiuyt; 01-28-2015 10:37 AM.

Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
poiuyt #187977 01-28-2015 10:26 AM
Joined: Jul 2009
Posts: 1,406
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Andrew, you're one of the bravest guys it's my privilege to be introduced to here at a forum full of incredibly brave people. Welcome to our family. We're here for you at all times.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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