| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | David, did you want to say something???
Well, I went to see the gastro Dr today and he said everything looked good. His office knew of a dietician that was contracted through my insurance company. They are going to get me set up with this dietician. He also tighten up my PEG tube, because apparently when the nurse last Wednesday looked at she loosened it up a bit. He said I had been doing a good job keeping it clean without anyone to help me. He also calculated how much jevity I would need a day. Told me to call him back if I ever need anything else. He came tp his office today just to see me. What a great Dr.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | 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 | Oops, I thought I did!!
What I wanted to say was
"look at you, 1 week ago you were a Newbie and your last Post you were giving expert advice. I was just proud, that's all."
Of course I wish you didn't have to be here at all but...
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Angelia, So why all the pain and did he give you something for it or did it go away?
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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I have stuff for the pain. He says it is muscle spasms.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks David. I needed to read that. I am just so ready to get this treatment underway. I had the practice run today, and totally freaked out when I walked in there. I tried really hard to hold it together, but I couldn't. Anyway, I am going to do this, and I will make it. I hope to be able to help other people along the way.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Angelina...I've been gone for one day and I missed all sorts of information. So I'm all caught up now:) I'm so proud of you too. As I said before, you knew weeks ago that something wasn't right and you stood up for yourself and took action. That is hard to do sometimes.
The PEG sounds like a real pain so I hope it gets easier. The Ace bandage sounds like a great idea. Hopefully you learn other tricks along the way that will help. How is it going sleeping on your back? Based on FB not too good.
Sounds like you and your hubby had a nice talk. How are your kids doing? I'm sure your husband is scared and doesn't know what to do. I am very blunt so if I needed something I just told Ray. By my 4th partial glossectomy he knew what I needed before I did!!
You are going to make it and you will be fine. That's nice about the Jevity that you got. And I agree Bloop, Ensure is very expensive.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | 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 | Angelia,
I remember the first time I was BOLTED down. I could hear my heart thumping. I thought it was going to pop right out. You will get accustomed to it but loud music certainly helped me pass the time. Once a week they took measurements AFTER they bolted me down and that added an extra 10 minutes give or take. I didn't like those days but the rest of the time I was only down for about 15 minutes.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Well Angelia,
As forceful and blunt as I have probably sound to you, be sure, that I, as just a caregiver, not a patient, have had my moments losing it too.
Our first walk into the RO's office ...well actually on the way there...I could feel panic rising in my throat. I have never had a panic attack in my life so don't know if this was that but it sure felt like it. I knew we had to be there and I knew that it was the treatment that was going to save Bill's life but I was so overwhelmed and scared and felt like, "What the H*ll are we doing here...this can't be happening." I felt the tears welling and I just wanted to run away. Oddly enough, over the course of a few weeks, the office became like family. I would take Bill and visit with the people who were there at the same times each day learning about their situtions, etc. Some helped me and I helped others. It was a place to share and hold each other up.
You will be fine and once going to treatment, feel a little more in control.
Hugs again,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks guys. I am so ready to get this started, but I am not going to be on here for a few days as I am going to enjoy Thanksgiving with my family and not think about the C word at all. Or at least try to.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | I think that is a great idea
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
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