| | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Hi Ingrid...it's nice to see familiar "faces" here...Yes, I'm in the middle of week three....the "honeymoon" period I believe is about over. I have no choice but be determined...the alternative is well......bleak...LOL.
David....my Oncologist said I'd be getting Cisplatin every three weeks for 3 treatments.....then said, I'd be getting another three treatments of Cisplatin and "another chemo drug"...but did not elaborate on what that other drug may be. I'm guessing (from hearing other people's experiences with adjuvant chemo) that it will be 5FU. I will be talking to the Oncologist at sometime before this comes to pass...I haven't seen hide nor hair of him since our orginal conference, but do have regular appointments with his Nurse Practioner...
Mark....it's WONDERFUL to hear from a NPC survivor...just hearing you on here lightens my load....you have no idea!
p
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | | 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 | P,
Be watchful of what they call "ringing in your ears" which really didn't sound like ringing to me, more like a really faint buzzing. Cis administered in this big bag approach (every 3 weeks) can cause permanent hearing loss. I know for fact. Perhaps discuss Carboplatin with your MO but regardless get him to discuss the warning signs of Cisplatin and what to do if you begin to experience any of them. I didn't notice any problems with Cis until after my second bag which was appx 15 rads into my Tx.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to OCF Neighbor!
I'm not too far away from you at all over in Idaho, in fact there was just a OCF event not too far away from you in Columbia Falls. Glad you found the forums, welcome to our little oasis on the net!
As a second to David, as I sit here typing this the ringing in my ears is loud and clear. I've experienced very real hearing loss from that drug and it can be very frustrating. Just keep an eye out for it. Mine started after my second dose as well I just wasn't informed it was an issue, or was on too many other drugs to notice until it was too late.
Keep the great attitude! All we can control through treatment is our attitude, hydration and nutrition and I believe that attitude is the most important, keep that and the rest comes easy.
Eric
Last edited by EricS; 05-09-2012 08:34 AM.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | I was going to ask if the hearing loss would be sudden or gradual...I've had ringing in my ears since January (a symptom of NPC)...so for me that wouldn't be an indicator that my hearing was taking a beating....I'm used to the buzzing, now.
There was an OCF event in Columbia Falls? That's only 15 miles away, and none of the folks I've met here (so far) with OC mentioned it, so am thinking they didn't know about it either. We are trying hard to get a support group together...so far we've only found 6 people total in our area, who have suffered H & N cancer.
I'm keeping a positive outlook...and I think my "daily attitude" is pretty good, considering I'm doing amifostine and rads everyday....just always glad to get home!!
p
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | | 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 | Anyone's hearing affected by cisplatin should begin to notice a difference within a week of being given the first dose. Im one of the lucky ones who did not get affected by the cisplatin, but I only had 2 doses too. Are you talking about Lisa's Voice? This was put on in honor of Lisa Petersen who sadly passed away last October. She was a member of OCF and also good friend of mine. I greatly miss my friend Lisa! Lisa talked with me many times and had always wanted to help spread awareness and attend a walk or event with other OC survivors. Her friend Jan hosted the event and set up OC screenings. There will be at least one (possibly 2) events for Lisa's Voice next year as well. I hope to be able to attend one of them. Here is the link for the Lisa's Voice event. Lisa's Voice 2012 event
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 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Yes, Christine, that must have been the event....Was Lisa from my area? I'm so sorry you lost your friend....the friendships we make during this particular crisis in our lives run deep...A girl I met on CSN, who only lives a few miles away from me...picked me up, dusted me off after diagnosis....and has been invaluable as a source of information and support...I don't know what I'd have done without her.
Hugs to you...
p
Last edited by phrannie; 05-09-2012 10:35 PM.
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | | 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 | Lisa was from Kalispell. Is CSN how you found OCF? I know there is a chat I recently got added to over on facebook. Maybe we already know each other. Im Christine Brader.
**** For privacy reasons, this forum is anonymous. You do NOT have to say who you are.
Last edited by ChristineB; 05-10-2012 04:13 AM. Reason: added privacy statement
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 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Actually, I found out about OCF via the Facebook group...I've been at CSN since I first was Dx'd....the girl who started the Facebook group is from Whitefish, and the person who picked me up and dusted me off when I first found out I had cancer.
Do I know you from CSN, Christine? Are you in our area, too?
p
Last edited by phrannie; 05-10-2012 08:21 PM.
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
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