| Joined: May 2009 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2009 Posts: 35 | Thanks, David, for your feedback on the hearing side effect. Incidentally, I will be at the hospital today (for a different check up) and will try to schedule a session with my chemo oncologist.
Sorry if I seem to have started a different topic on this thread, but I thought I was replying on the same topic regarding cisplatin side effects, per Angelia's initial post on Nov 01 ("I was just wondering if you could tell me some of the side effects of IMRT and cisplatin."). Perhaps I misunderstood.
Jojo
Diagnosed: 16Feb'09 Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0) Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG Decanullation: 24Mar'09 IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09 PEG out: 23Oct'09
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | I mirror David's comments. My Oncologist also warned me about the side effects going into the treatment, telling me that by the time it's caught (I notice it) it could be too late. Sure enough, it happened. Hearing aids help some but most of it is high pitch loss and ringing. Being fatigued or stressed seems to add to the ringing. The plus side, the treatment(s) did the job! It may not be for everyone but as mentioned earlier there must be a reason it's still widely used, success rate at what it does. Best wishes, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | jojo, no need to apologize.
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 | Jojo,
Sometimes posts start in one direction and turn another way. I was just letting you know that sometimes it's better to start your own fresh post where you stand a better chance of getting fresher comments.
BTW unless you hate on somebody or try to use this site for personal gain, there's no need to apologize.
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: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 71 | For those of you who have tinnitus from treatment I can tell you that it will bug the hell out of you for awhile but you will get used to it and only notice it when someone says something about it or you read about like I just did. I�ve had it for almost ten years. It wasn�t from the cisplatin, but from loud music, chain saws and other things like that. You will have a tendency to want the sound on the TV or radio up a little louder than your spouse, but I think that�s always been true with me.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09. 3/5/09-CT 6/12/09-PET, PEG out 12/1/09-CT 12/6/10-PET 12-8/11-CT 1-4/13-CT (all clean) | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I am having a Pre-TX hearing exam on Tuesday. I asked my ENT about it, and he said it generally doesn't happen, but that it would be a good idea to get a base line. He also said that i would not lose my hair. Is that true? Is hair loss a side effect of cisplatin? I still do not know exactly whet regimen I wil be on as I have yet to meet the MO. I go to him on Tuesday as well.
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: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2009 Posts: 35 | Thanks, Ray. In my case, since I've had my operation in March, I hadn't been exposed to any loud noise (from music, bars, pool halls, urban traffic, etc), in fact, it has been literally a quiet life for me since then. I did notice the ringing in my ear just recently and was completely unaware that a possible side effect of cisplatin is hearing loss. I've never heard nor read about this before, until I saw some of the blogs here. At this point, I'm not worried or stressed about it, i't simply news to me. I have already scheduled a hearing test together with my next ct scan, as prescribed by my doctor during my recent check up.
Angelia, Prior to my treatment, a lot of people, including my oncologist, did warn me of possible hair loss as one of the side effects from chemo (cisplatin x 3, in my case). However, I was fortunate enough not to experience this...or any of the 'usual' side effects like nausea or vomitting. I just felt extremely tired after each session, my body was telling me to rest, and it wasn't unusual for me to get minimum 12 hours of sleep. My RT did more damage to me than my chemo.
Jojo
Diagnosed: 16Feb'09 Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0) Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG Decanullation: 24Mar'09 IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09 PEG out: 23Oct'09
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I was advised before chemotherapy that "there was a good chance that my hair would probably thin out quite a bit due to cisplatin", and it did thin out.
There were not chunks of hair coming out or anything like that, otherwise I would have probably been really upset - it was only noticeable to me when I was washing it or brushing it - unless I mentioned it, no one else except my hairdresser and I noticed it.
Like Jojo, I was fortunate enough to escape the other possible side effects from the chemo. Radiotherapy caused more damage to me than the chemo.
Karen
Last edited by Karen Rose; 11-07-2009 06:16 PM.
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Angelia. John had EXCELLENT hearing before the Cisplatin. He does have hearing loss from the Cisplatin (upper ranges). His hair did thin out a lot from the chemo but is filling back in. John also lost hair along the base of his neck from the radiation. John's major side affect from the radiation and the Cisplatin was the constant, excessive mucus and nausea. John was on both Zofran and Compazine all through treatment and up to a month past treatment. You can do this! John is almost 7 months out of treatment and doing GREAT! The feeding tube was only in for 5 months. He has gained 5 lbs. back from the 30 he lost. Food taste and feel still isn't back to normal but is getting better. Hang in there! Hugs, Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | 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 was never warned about hair loss from Cis and I never even had thinning much less loss EXCEPT for the hair on the back of my neck where the radiation exited was lost temporarily and my facial hair fell out and only came back above my chin line. That was also due to the rad.
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.
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