#67362 01-12-2008 11:46 AM | Joined: Dec 2007 Posts: 17 Member | OP  Member
Joined: Dec 2007 Posts: 17 | Hello to everyone. My best friend went down to MDA last week for treatment for squamous cell cancer and she calls me every day to update me. Yesterday they removed 15 teeth as she will be getting chemo and radiation beginning in a couple of weeks. I have been reading here extensively for the last month and I have learned so much and without a doubt is the best site I have found, just seems like one big family. I wanted to send it to her but she does not want to read about it, so I respect that decision. I know she has a rough road ahead and I will always be here for her. I am a 4 year bc survivor so can relate to a lot of it. I wish everyone all the best and many thanks for sharing.
Scotslass,friend of June, diagnosed in Oct.2007 and beginning treatment this month chemo and radiation.Cancer in the neck with unknown primary...wrapped around carotid artery.
| | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Welcome scotslass!!
Your friend is lucky to have your love and support. You will be able to help her by seeking information for her without disrespecting her wishes.
If she ever decides to have a look at this site I'm sure she would find it helpful.
If you have any questions that I may be able to help you with just ask or PM me. Feel free to e-mail me as well if you wish.
I'll say some prayers for her.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Hello and welcome to OCF! Sorry to hear about your friend, especially regarding the need to pull her teeth before chemo & radiation.
I, too, am a two-time BC survivor, but this OC is a different demon altogether, I have found.
Please convey best wishes to your friend as she begins this journey, and stay with us if you will. There is much to learn and share!
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Och aye, welcome!
Ask, vent, wonder---and receive all the support and information you will need to support her.
Even if she 'doesn't want to know about this site', you will be able to pass on information to her when she has questions and concerns---which she sure will have!
And others have printed off relevant posts/pieces of information for friends/family and found that they've slowly come round.
You are certainly in the best place.
Can you go to your 'My Stuff' and add something in your signature space to tell us where your friend's cancer is/dates etc.
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Dec 2007 Posts: 17 Member | | OP Member
Joined: Dec 2007 Posts: 17 | Many thanks to all for the welcome, I will keep you updated on her treatment and I am sure I will have many questions.Brenda I will go to "my stuff" and see if I can give more info on her diagnosis, She did ask one of the many doctors that she is seeing what stage was it at and he told that they do not stage for head and neck cancer, but she has a meeting with chemo oncologist wed and she will ask him.
Shirley
Scotslass,friend of June, diagnosed in Oct.2007 and beginning treatment this month chemo and radiation.Cancer in the neck with unknown primary...wrapped around carotid artery.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Scotlass, is she getting rad implnats in her tongue. I have to get all my teeth pulled and then they are going to put the implant seeds in my tongue. I am waitng for ins approval but should get it because this is a medical issue. I feel you will be a good provider for her and wish you well. I have a reoccurance and didn't get rad or chemo in Aug for go around with this OC. Both sides of my tongue this time.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2007 Posts: 17 Member | | OP Member
Joined: Dec 2007 Posts: 17 | Jim, I will ask her tomorrow when she calls about the implant, she has all her front teeth left so I don't know if maybe she is getting a bridge or implants........... right now she just wants it all over with, she has no idea that it is going to be a long road ahead but she has a very positive attitude, how are you doing now, you always seem cheerful and I smile a lot at your posts.
Scotslass,friend of June, diagnosed in Oct.2007 and beginning treatment this month chemo and radiation.Cancer in the neck with unknown primary...wrapped around carotid artery.
| | | | | Joined: Dec 2007 Posts: 17 Member | | OP Member
Joined: Dec 2007 Posts: 17 | Jim, just re-read your post and now I realize the question you asked was concerning RAD implants..... silly me, thought you were talking about teeth implants........... she will be going through 6 weeks of radiation, with perhaps more surgery afterwards.
Scotslass,friend of June, diagnosed in Oct.2007 and beginning treatment this month chemo and radiation.Cancer in the neck with unknown primary...wrapped around carotid artery.
| | | | | Joined: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Welcome!!
I am here for the same reasons with my Dad. He doesn't want to read it for himself, but I read, post questions and cut and paste specifics to send to him via from time to time. I figure he might read it, he might not, but at least it's there when he is ready! This board has been fantastic for me!
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Scotslass,
You said she was going to MDA and that they told her they don't stage for H&N cancers?? I have never heard that one, especially from MDA. I think she needs to ask another doctor.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | He likely avoided the question for reasons that we will not know, but usually this is to prevent late stage cancer patients from developing a negative outlook about their future. A lesion that is wrapped around the carotid artery is a late stage cancer, and is difficult to treat. This is just speculation on my part, but I guarantee you, no one gets treated at MDACC in Houston without their disease being staged. This is an institution that follows strict guidelines for treatments guided by staging.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL Scoylass, you made me laugh when you told me what you thought I said.I still have 23, had more before this OC started,, and they have to pull them because the teeth wil decay and then rot > that will cause infection,, so there fore bye bye teeth.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL i sure make typos.. scotlass.. there i got it
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2007 Posts: 17 Member | | OP Member
Joined: Dec 2007 Posts: 17 | David & Brian, thank you for your comments. I found it strange too that he responded the way he did, Brian you are probably right regarding the negativity part..... I think it was the dentist who did all the extractions she questioned. She has an app. with the chemo oncologist and she may ask him. Today they did the fitting for the mask and as soon as the mouth is healed treatment will begin. It started with a lump on the neck and the surgeon here went in to remove it and sent off the biopsy, after surgery he explained to her husband that he could not get it all because of the carotid artery........ so they decided to get a second opinion at MDA and now she has decided to stay there and let them do the treatment. She is very upbeat and has a very positive attitude so that will help a great deal. Pet scan shows it is confined to the neck. I know from experience she must worry though. All I can do is support her and pray for all who go through the road to recovery, not an easy journey for sure.
Scotslass,friend of June, diagnosed in Oct.2007 and beginning treatment this month chemo and radiation.Cancer in the neck with unknown primary...wrapped around carotid artery.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Meet my chemo oncologist wed. Be a shame if it was a good looking lady LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2007 Posts: 17 Member | | OP Member
Joined: Dec 2007 Posts: 17 | Jim, my friend had 15 extracted last friday and will begin her radiation and chemo as soon as her mouth heals, I think they told her 12 to 14 days. She is coming home for a few days before treatment begins, she has an app on wed with chemo oncologist to discuss treatment, hope your app goes well too, take care.
Scotslass,friend of June, diagnosed in Oct.2007 and beginning treatment this month chemo and radiation.Cancer in the neck with unknown primary...wrapped around carotid artery.
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Oh boy---seems like Wednesday is a big day all round!
Good luck to June and Jim--you're heading for 'cures'!!
Bren
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thank you Scotlass and Brenda. I hope it's on the way to cures, but the way it feels today I have my wonders. Still have a stitch or 2 that didn't dissolve , another white spot on my tongue and a lump on it about 1/2 way back. I been livin on those happy meds today. LOL I hope you all are having great days on this snow covered , snow shoveling fridgid day
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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