Hi folks! Not sure where to post this so i thought I would start here. I don't post on here really, just sorta of listen in from time to time. What I would really like is a support group where people can meet. there doesn't seem to be one in my area, which is sad really. It would be nice to talk to people who understand and not just when I am having another reoccurrence. I have survived 6 occurrences with this beast and still standing! This month marks 10 years I have been fighting oral cancer. and you know what, I am still strong, but damn tired...
I know how you feel. the first time I ever met any other head and neck cancer patient was three years after my diagnosis, and that was at a SPOHNC meeting, and just had one on Thursday, Have you tried them? They have chapters throughout the country, and meet once a month. There are others, non head and head cancer, like Gilder's Club, which I never attended, but heard they are good. Check your local hospitals, treating hospital, to see if they have any. Maybe you can start your own support group with the help of your hospital or other organization. OCF have walks that maybe you can participate and or help organize or start a new one. See ChristineB for that.
http://www.spohnc.org/local_chapters.phpGood luck.
Hi Paul,
thanks for the reply, I need to look into spohnc. I had actually forgot about them. i do have a number for them and i see they have meetings in baltimore, which is about an hour or so from me. All I seem to do is go to doctor appts, in fact I go to NYC on the 30th to see my surgeon Dr Urken and get another PET.
I have never met anyone else like me.
thanks. Gina
I go to Beth Israel also since 2012, and know of Dr. Urken, who hasn't lol. I see Dr. Jacobson, who works closely with Dr. Urken, and Dr. Harrison RO, Dr. Cunnely MO there also. We just had a SPOHNC meeting on Thursday at Beth Israel, 3-5pm, 5th floor, the 4th Thursday every month. The other two SPOHNC meetings in Manhattan are Mt. Sinai, NYU. I go back to Beth Israel on May 1st for my 3 month post treatment PET/CT scan, and then doctor follow-upset start again.
Good luck with everything.
Hi Gina,
There are not many face-to-face support groups for head & neck or oral cancer. SPOHNC is the only organization that I'm aware of that organizes support groups for H&N cancer, and these support groups tend to be held in larger cities.
There was a H&N patient education day today at Johns Hopkins. From what I recall they have a patient education day once a year in April.
OCF sponsors a number of awareness walks around the country, and there is one in Baltimore next Saturday (5/3). The OCF events are listed on the OCF website and the list can be view via the More Ways to Help OCF link that should appear in the upper right side of this webpage. This is a great way to meet other OC survivors and support OCF.
I've been the co-chair of the awareness walk in the Lehigh Valley (PA) since 2009 and last year we had about 15 OC survivors attend the event. Because of my involvement with OCF and the awareness walk I have meet a number of oral cancer survivors and it is great to be able to talk with other survivors face-to-face.
Also check out the American Cancer Society or the Cancer Support Community. They may not have a support group specifically for oral cancer, but there may be some general support groups you could attend.
Wishing you the best!
Good Morning Paul,
Yep, who doesn't know Dr Urken. He is a life saver, I got referred to him from my surgeon at Johns Hopkins. He said my case was getting to completed and needed the best. I will also see Dr Hu, my radiation doctor while I am there. they are all great at the NYC office, just so damn busy! I have to be in NYC at 9:30 am for my PET. ugh! Here I see Dr James Sciubba, he is a lifesaver as well.
when I had my last round of surgery and rad and chemo in June I stayed at Hope Lodge in NYC for 7 weeks. They are the best over there as well.
I gotta find a way to meet people like me. Have a great sunday!
Good Morning Susan,
thanks so much for the information, I will check out the walk in Baltimore next saturday. I think I wouldn't feel so isolated if I met someone like me.
thanks and have a great sunday!
gina
Hi Gina,
Dr. Hu is great too. I stayed at Hope Lodge on the 8th floor in 2012 Oct/Nov for six weeks, and during the hurricane. Beth Israel closed for 5 days due to no power, and had to go to Roosevelt Hospital for radiation, another one of their hospitals, for several treatments. Hope Lodge it is a great place, met a lot of people, and better than most hotels. The kitchen on the floor was our meeting place. We never lost power, but most all below 34th street did. Are you staying there for your visit? I know some do stay overnight, have tests, go home.
There was an Oral Cancer walk in NYC this past Saturday, but couldn't attend. I hear it has a lot of participants, but I'm not walking 4 miles lol.
Anyway, if you are in town longer, maybe we can meet for some coffee or another time. I'm going back on Friday, probably, to pick up my scan report. I don't wait to see my doctor's, although it's the following Monday and Tuesday.
Hi Paul,
yep 4 miles, I don't know if I would want to walk that far either! LOL..
What I liked about Hope Lodge were the "alternative healing" therapies i was exposed to, they definitely helped get me through treatments while I was there. Dr Hu, is awesome, and i love Cathy in his office!
I am not staying in NYC on the 30th, I am taking the train in and leaving the same day. My pet is at 9:30 am, but the only train still available gets to NYC at 7;30 am! ICK!! I am going to call the pet center and see if they can get me in sooner. then I have to see Dr Urken and Dr Hu, and catch the 3:00 train back. I would love to meet you though!! I think that would be awesome!
Look up SPOHNC on the internet, they have a list of all local chapters. We even have one here in my home town that meets twice a month.
I've been to several meetings, but the support I get here on OCF is way better.
Tony
The OCF walks are a great way to connect with other survivors. Don't worry about actually doing the walk. We've had many survivors and others attend, but physically were not able to walk so they just hung out at the pavilion.
The walks will have speakers, food and entertainment! They also offer free oral cancer screenings, so invite your friends and family to attend also.
Look up SPOHNC on the internet, they have a list of all local chapters. We even have one here in my home town that meets twice a month.
I've been to several meetings, but the support I get here on OCF is way better.
Tony [/quote]
I attached the SPOHNC local chapter link in my first post.
http://www.spohnc.org/local_chapters.php
Thanks everyone! I will check it out.
