| Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Yes. Glad to hear treatments are done and now the process of getting better. Tough as you are, it will be like a weekend hike. Best to you, 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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks Don! Day two of freedom lol!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Glad to hear your treatments are done in good order. When my husband was having his IMRT treatment, he and his RO (both physics geeks) would chat about the proton technology. It really is pretty amazing. Best wishes as you recover. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thank you Maria. It is amazing, including the size of the facility. I don't know if it was this for profit center, but the staff had to be at least 4 to 1.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote]I don't know if it was this for profit center, but the staff had to be at least 4 to 1.[/quote]After viewing those videos, there is NO way on earth those facilities run in the black on their own. There must be government and private subsidies to keep them afloat for now.
The 4 to 1 is those you SEE. There must be a number of them like the wizards and other specialist techs who keep all the proton machinery running and monitored.
It really looks like a science lab experiment that somehow got loose and got permits to treat humans. lol
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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I know the Proton Center they are building in Manhattan has an investment opportunity for foreign investors starting at $250,000, who will get Visa's under a government program for them and their family. Forget what else it included. Not sure if it was the case here. 4 to 1 is just a guesstimate since that's the most patients at anyone one time I see, 4 machines, 30-60 minutes per patient. I would probably see about 20 employees, and this is just a radiation center. When I had IMRT at another private radiation center, which was twice as busy, there were 8 employees. In total, with all the Proton Centers in the country (11) only 6,000 patients can be treated each year with Protons. At my location, which opened in 2012, I believe, I'm their 507th patient. All the centers are pushing to treat prostrate cancer noe, someone said as prostrate mills lol, since it's easy money. I read that it cost $49,000 to treat prostrate with protons vs $43,000 with IMRT, which wasn't wha I read before that Protons was twice as expensive as IMRT. I'll see when my bill comes in lol.
One question I have now, and will ask on follow-up, is about re-irradation with Protons, its frequency, like it's done with IMRT. I would assume it may, based on the patients total Gy, organ toxicities, etc? I gave the center about 26 disk copies of all my PET/CT, MRI, and CT scans at my initial consultation to map my treatment plan. I don't know which ones were used, but it took 3 weeks.
All in all, it was an educational, visually appealing, and an amazing experience.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Kramar,
to answer your question, two of the members are lined up for IMRT treatment. One is (user name Fish, feb 6) and myself by end of feb. So you can expect more responses to your questions in coming days regarding IMRT post experiences.
Hope fully, I am starting new topic on that soon. Something like "Post IMRT treatment effects and experience"
Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I think you posted on the wrong thread?
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm two weeks post treatment today, and everything is fine as they can be. I saw my oncologist on Tuesday, had a prior blood test, all which was in the usual range, although some are out of range as expected, like my hemoglobin dropped to 9.5 from 9.9, but still good enough not to need a blood transfusion or shot, whole CBC is low, although platelets are fine, creatinine 2.1, which has been my new base line for several years, and CEA 2.6 slightly high above the normal range. My doctor takes a CEA tumor marker test, which can be used to monitor head and neck cancer recurrence, but is not a sole indicator.
As far as energy, I have none. I have breathing distress standing for an extended period, my head gets heavy for my neck, which is in the minutes range, and could be partially from the low hemoglobin, treatment, surgeries, high, low blood sugar, but not really new after all the treatments, surgeries, which send you back to where you started. I may, when things settle down, see about PT or just go back to the gym, although I'll ask my doctors fir any restrictions, especially with the carotid artery removal, which reminds me I have to see the cardiologist to do the stress test I canceled.
Taste is still minimal, but for a while during treatment, I could eat spicy foods that was not possible for a few years. Not anymore, so that may be a sign my taste buds are going back to the old new normal lol. Teeth are getting worse, so there at foods I stay away from that are difficult to chew.
My neck is fine, the redness from treatment turned brown, with some skin peeling, nothing raw, probably from wearing a collared shirt rubbing against it, and still using Cetaphil, which I find less greasy, actually none, compared to Aquaphor, I can see a difference in this treatment vs. last year with the same 50Gy, which last year had minimal redness, no browning, skin peel, but is difficult to measure since I had more rads since, but they do say the entry wound with Protons is higher than IMRT. I have an appointment with the Radiation Oncologist in early March.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | SO glad you are getting on... The hemoglobin is likely the cause of your lack of energy and the fact that your body has been through a lot. It also effects your breathing as you know. You've been through a lot. I know you have no energy and it's cold in NYC right now, but bundle up and try a little walk - it may help just a change of scenery and to stimulate your metabolism. Do you have someone you could walk with? Just a block even. It would help with O2 exchange. Though I suspect you may have to wait for your hem to get up a bit more to feel better. It does effect your healing so maybe talk to them about a transfusion? Also your diabetes issues do have bearing but you know all this.
I'n not surprised after having more rads your skin is having a bit more trouble this time around. You've cooked it a few times. Again I am sure none of this is new to you. Do they have you on iron?
Hopefully you heal and then get back to almost normal. Hugs.
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
| | |
Forums23 Topics18,235 Posts197,106 Members13,294 | Most Online1,788 Jan 23rd, 2025 | | | |