#96326 05-29-2009 02:08 PM | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Just a note to all my friends that I've finished 4 weeks of chemo/radiation!! I'm over 1/2 way home; just three more weeks to go.
To newbies Although my experience may be atypical, I just want to offer some positive feedback as my experience has not been as difficult as some have encountered. My pain is in my tongue, but it is tolerable. My saliva is thick; but I don't have a "sahara" mouth. My neck has gotten tan, not burned; but it is a little itchy. My biggest complaint is NO TASTE BUDS. Can't taste a darn thing except chocolate. Sweet, salty, spicy all gone for awhile. Don't know what to expect for the next 3 weeks but so far all side effects have been mild to moderate. I've been told that the side effects are cumulative thoughout the 7 weeks; I'll keep you posted. But for right now, I'm celebrating!!!!!!!!!!!!!!!!!
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Sandy
newbie is a relative term. Many of us here felt just fine like you do at this point. I was particularly proud as I was still eating regular food including pizza, etc, Good thing I had not discovered this board as unlike your matter of fact post, I would have attributed it to my visualization with the toy ray gun, or even manly man status. Then as they used to say in the Luci and Dezi show: "I'd have some 'splaing to do," Just a heads up that not only are the effects cumulative, the absolute worst is the first two weeks after all TX has stopped. You are entitled to celebrate and I hope that you sail through the remaining weeks just as easily. A positive attitude helps immensely and positive expectations are a blessing. Last but not least: I am doing the exact same thing now, with tolerable side effects and will be done TX next Wed. Only in my case, my RO keeps warning me and warning me how bad it is going to get - even worse than the first time around. Let's both prove them all wrong ! 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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Yep Sandy, I never had any probles until later. Got em now a good bit tho. You are a toughy like some of us .
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: 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 | Everybody and their Caregivers that goes thru this cancer gets an I'M A TOUGHIE BUTTON and some of you get a few STARS added for being an OUTSTANDING TOUGHIE.
JMO
Sandy,
I hope you are one of the lucky ones but don't get discouraged if weeks 4 thru 10 aren't as bearable, especially weeks 8, 9 and 10.
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: 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 | Way to go Sandy!!!! Love your positive attitude and wishing you continued ease thru this. Glad you wrote the note to newer people here, its true you are getting by relatively easy so far. Everybody is different. Drinking alot of water seems to make this easier too. Hang in there and keep up the good work  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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Sandy, post again in a few more weeks and let us know how things feel for you. I hope they are good, but I a=had no problems for a long while, then when it rained, it poured. God luck Gal. '
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: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Sandy, Keep up the good fight and positive attittude, like you I had only minor prob;ems with radiation. GOD speed and good luck.. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | I want to thank everyone for their positive thoughts. I truly feel blessed, grateful and lucky (all of the above) about the treatment so far. I pray that it continues.
People come to this site terrified of chemotherapy and radiation. I just wanted to show OC patients that not everyone experiences the worse. I'm a very strong believe that your attitude influences how you experience your treatment.
I'll update you as time go on...Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2009 Posts: 75 | Sandy!
I am so glad you are feeling well. My thoughts are with you.
Chris
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | Joined: Feb 2009 Posts: 7 Member | Member Joined: Feb 2009 Posts: 7 | Glad you are doing well Sandy. Keep up the positive attitude as it definitely helps and beats the alternative. My dad is at the same radiology center as you and is doing Ok too. We have a few more issues with chemotherapy but we are keeping our positive thoughts going too. Take care and good luck.
Only daughter to 65 y.o non smker Dad with 3.2 cm Rt lower alveolar rim SCC with 4 level 1 lymph nodes, T4N2bM0- IVb. Had right mandibulectomy and neck dissection with fibular flap reconstruction 3/2009. Recieving IMRT, planned 34 Tx and Cisplatin 3 cycles since mid May 2009.
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