Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Apr 2013
Posts: 5
Parkie Offline OP
Member
OP Offline
Member

Joined: Apr 2013
Posts: 5
I am a 70-year-old male with Parkinson's Disease who has just been diagnosed with stage IVa oropharyngeal cancer. The OC IVa came as a complete surprise to me. In spite of the Parkinson's, I was bicycling 20 miles every other day, and walking two miles on the days I was not cycling. I felt perfectly fine--no pain anywhere, no difficulty swallowing, no feeling of being tired, and no loss of weight. My cancer was discovered only because my neurologist noticed a lump on the left side of my neck, which turned out to be a squamous cell carcinoma metastasis from an unknown primary. A review of past photographs revealed that I had had the unnoticed lump for at least nine months without feeling the effects of anything other than my Parkinson's. In the meantime, in an effort to locate the elusive primary cancer, I have had both of my tonsils removed and the inside of my mouth biopsied in several places. My Parkinson's made dealing with just this minor surgery very difficult. Finally, I was sent to Stanford Hospital, a teaching hospital, in Palo Alto, California, where they found some noninvasive in situ squamous cell carcinoma at the base or the tongue, but no definite invasive primary. They also determined that I was positive for HPV. I have never smoked, was never much of a drinker, and have not drank alcohol for the several years that I have been diagnosed with Parkinson�s.

The cancer physicians, of course, want to give me the standard course of chemo and radiation therapy, which could leave me with some severe side effects, some of which could affect my swallowing and intake of food. As Parkinson�s Disease progresses, as it inevitably does, the person often develops swallowing problems. I don�t think I want the treatment. My wife (no children) is appalled that I am balking at the treatment, but I have told her that the quality of whatever life I have left is more important than the length. Just the biopsying has already seriously interfered with my enjoyment of life.

I was wondering whether any of you have had Parkinson�s prior to being diagnosed with OC and had the standard radiation-chemo therapy, and whether you were glad you did, or regretted it. Any guidance you could give me from your personal experience would be greatly appreciated.

Last edited by Parkie; 04-23-2013 05:50 PM. Reason: clean up grammer

Michael
Parkie #164271 04-23-2013 03:18 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Parkie, welcome to OCF! I have moved your post over to when it will get some responses. The post you had written on was an old post so you probably have not gotten a reply as that member only had that one post back in 2009. I was one who replied, another inactive member and a dear friend who had replied has since passed away a few years ago. Im glad you have found OCF so you can get some help with info and moral support with your OC battle. Even with your specific question I am certain this site will be helpful to you with many other things to do with oral cancer.

I have seen many patients in their 70s successfully get treatment for oral cancer. Ive even seen members in their 80s do ok. Its not easy but it can be done and a long good quality life can happen when you get your cancer taken care of.

The best thing I can tell you is to go to a major comprehensive cancer center. They have the most experience in treating more oral cancer patients and those with other health conditions.

Best wishes!

Cancer Center List



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
ChristineB #164273 04-23-2013 05:54 PM
Joined: Apr 2013
Posts: 5
Parkie Offline OP
Member
OP Offline
Member

Joined: Apr 2013
Posts: 5
Thanks, Christine, for guiding me through this new experience.


Michael
Parkie #164278 04-23-2013 10:58 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hi Parkie, I'm sorry you have had to join us.
I agree with Christine, get yourself to a CCC . They see and treat the most patients each year and hence are very experienced. They should be able to answer your questions re Parkinson's disease and swallowing difficulties.
I have to say that I am with your Wife on this one. Not being treated is a certain death sentence. Even IF you do end up with swallowing problems, even IF you end up having to take all your nutrition via a PEG tube, life would still be good. Really , in the scheme of things this is a minor problem. Please rethink this issue.
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!
Parkie #164334 04-25-2013 05:07 PM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
Hi there, Parkie!

I'd say that it's nice to have another septuagenarian here, but since I can't spell it (even tho I are one;) I'll just say "Howdy, pull up a stool and make yourself at home!"

I urge you to keep up your workout regimen as much as possible; it will make a huge difference in the way you tolerate chemo; at least in my case, and my MO has come around and agrees. He had never, in over 20 years of practice, encountered a patient who would, in his words, even think of using the words "work out" and "chemo" in the same sentence.

Rather than retype my story, here's my intro which contains most of the advice I'd give anyone undergoing this particular dance. Since we have age in common, you might find it interesting (even though I am not famous for my brevity.)

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=163644#Post163644


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Parkie #164388 04-27-2013 08:02 PM
Joined: Apr 2013
Posts: 5
Parkie Offline OP
Member
OP Offline
Member

Joined: Apr 2013
Posts: 5
Thanks to all who have read and commented. I have decided to proceed with treatment and will have my first chemo on Tuesday.


Michael
Parkie #164389 04-27-2013 11:23 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
So pleased to hear this.
What exactly is your treatment plan? Are you having induction chemo prior to starting the chemo / radiation?
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!
Parkie #164415 04-29-2013 05:42 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Awesome best of luck with treatments.


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
Parkie #164419 04-29-2013 06:38 AM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Michael, Im wishing you all the best with your treatments!!! Please dont be a stranger around here. We will help you get thru this. Its not always easy but you have us in your corner!

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
Parkie #164428 04-29-2013 05:52 PM
Joined: Apr 2013
Posts: 5
Parkie Offline OP
Member
OP Offline
Member

Joined: Apr 2013
Posts: 5
Does anyone know anything about a University of Michigan study investigating potential benefit from Nisin? Here is a link. I was surprised there is nothing about it on this oral cancer support site. I would especially be interested in information regarding follow-up clinical trials.


http://www.ns.umich.edu/new/releases/20945-common-food-preservative-may-slow-even-stop-tumor-growth



Michael
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5