| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | What a great idea to ask Santa for : the lifetime virus exemption. David, I'm sure your wife can whip up a healing Cuban version of chicken soup to ameliorate your misery if you ask. Actually, I have not had a cold or any other illness at all since the Cancer was diagnosed - and zero flu shots. Counting my blessings (as well as the views of this thread - I had asked to get over 10,000 by Christmas and we have reached 10,450) and just to stay on point: What I will hate is not being able to shovel the foot of snow predicted here for tomorrow without getting tired plus having to bundle up like crazy instead of just jeans and T-shirt with steam pouring off of me like before Cancer made me just like the old cartoon character: Chilly Willy the penquin - always cold. Charm Charm
Last edited by Charm2017; 12-18-2009 07:35 AM. Reason: typo
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I hate when people try to talk to you like they know what you are going through. Or when they ask stupid questions like why are you in so much pain? Uhh, hello I have radiation being shot in my mouth and it is getting burned to smithereens. I try to be undertstanding, but it is so hard to sometimes.
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 | Angelia,
You're funny when you're being tortured!! With that attitude you will do above average. I was worried about you early on but you have adjusted way better than a lot of us did. Keep it up and before long you will be walking right out of that damn tunnel.
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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | David, I am still worried about me. I do not want to do anything. I have lost 60 pounds and still losing. I can not wait to walk out of the damn tunnel. I do have my moments when I am not funny. I have to cope some how, and I would rather crack jokes and laugh then cry. I have done my share of tears, trust me and I still do. I look at the machine and say "Beam me up scottie" I go some place else for 15 minutes. Wishing I could stay in that someplace else until this was all over.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Angelia... Are you saying you lost 60 pounds since rad/chemo started a few weeks ago???? If so your docs sure are missing this important side effect. It means you arent getting enough nutrition to sustain yourself. Any significant weight loss during radiation treatments would make you feel awful. Im speaking from experience, I lost 12 pounds in a week and everybody flipped on me. Of course, I felt absolutely terrible. Going thru rad/chemo is the worlds worst diet. I hope your weight loss is from your original diagnosis.
Once I realized the consequences of not getting enough calories in daily, I began drinking choc peanut butter milkshakes. Some days I would drink 2 or 3, each once had at least 1500 calories each. If you want the recipie, its listed in the eating section. Hang in there, you are about 1/2 way done. ChristineSCC 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 | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I am so trying to get in enough calories, but my damn throat hurts like crazy. So far today I have lost everything I put in my PEG tube due to this swollen uvula issue and it gagging me. Now my throat hurts even more than it did this morning. I now can not talk and lost my voice to. How can it all go down hill in just one day? I have lost 60 since diagnosis. About 20 has been since rads/chemo has started. The bad thing is, I just don't care right now.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia
Get a grip sister. 60 pounds loss is too much. I went from 177 to 126 but I was super muscled. Demand answers from your doctors. With a PEG, this should never happen. Somebody is doing less than due diligence with your TX. We all worry about you. charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | They seemed to have laughed it off last week when I had lost 8 pounds in a week well so did I. I am not laughing it off now. I will be okay. I am going to get through this.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I dont get it. You lost everything you put in the PEG due to the throat issue???? Please be diligent with this issue.
Charm is right, we all do worry. As a mother, I try to spare people from the horrors I went thru. I lost 65 pounds and that was with the PEG. I lost an additional 10 recently due to my 3rd round of OC. There was also no caregiver for round one to help me other than my 17 year old son who was still just a kid. Losing 8 pounds in one week shows you arent taking in enough calories. Time for you to get some help with taking care of yourself.
I will be blunt with you. If you are not getting enough calories and hydration you will feel awful and worse end up in the hospital. It happened to me several times. All I did was cry the whole time I was in the hospital too. With the holidays near and young children at home, please get help taking care of counting your calories and fluids. In the end you will feel so much better.
How many calories are you taking in with the peg daily? What about fluids, how many oz daily? ChristineSCC 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 | | |
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