#11483 07-30-2007 12:07 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Trev --
Make sure your MO has discussed with you candidly about the possible long-term side-effects of cisplatin -- and I am not talking about nausea -- rather that the drug is both ototoxic and nephrotoxic. Thje majority of people taking cisplatin experience some sort of hearing issue, and for a significant number, this can be permanent -- high end hearing loss or tinnitis (ringing in the ears) or both. My husband's Hopkins MO would not give him cisplatin because he already has high-end hearing loss from infections as a kid. She gave him a newer, very similar drug, carboplatin, which does not cause hearing problems. (They tested his hearing pre- and post-treatment and there were no changes)
The kidney toxicity is generally prevented by use of IV hydration infusion during the cisplatin infusion, but they will continue to check kidney function and change chemo drugs if you start having problems.
The nausea issue will be helped but not eliminated by the weekly doses. Make sure you are getting a *serious* anti-emetic beforehand and that you have a script for the similar sort of drug (ones in USA include Anzemet, Kytril, Zofran) to take afterwards. A late-onset nausea 2-3 days after infusion was a complaint I heard a lot from folks getting cis- at Hopkins. Some were getting 7 low doses are you will be.
Since you are in Aus, you can use Difflam mouth rinse during treatment - swish several times a day - as the benzydamine HCl in that rinse has been shown in clinical trials to significantly reduce the extent and severity of mucositis (mouth sores) which will interfer with your swallowing and eating as you progress through RT. It can be bought at any chemist's. Also comes as lozenges. (Not available in USA, yet.)
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#11484 07-30-2007 09:00 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I am not sure that it serves people well here to dispense information that is not backed by the data or proof. I have not seen any data that would suggest that a "majority of people experience some sort of hearing issue".
"Ototoxicity" is also considered a rare side effect. In some cases even the tinnitus has reversed (in my case, my hearing actually improved in subsequent audiology tests post Tx). It is, however, contraindicated for people with hearing problems to begin with.
In regards to the kidneys: "Nephrotoxity" is a rare and often reversible side effect. There is a precaution that if kidney function is inadequate to begin with then Cisplatin is contraindicated. The creatinene cleareance test is to insure normal kidney function prior to starting ct.
It is also vital to remain hydrated (although I did not, had cisplatin and still had no kidney damage).
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#11485 07-30-2007 02:48 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | The MO who took me off Cisplatin when my hearing got weird told me that otoxicity was found in fewer than 1% of patients. I told him that made me special. He did not laugh. | | |
#11486 07-30-2007 03:00 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I had cisplatin (though only two because my blood counts got so low), and had tinnitus short term; during treatment and now and then for the first year following treatments but have had no problems for a year or so. I don't think my heairng has been damaged in any way either (certainly not noticably). I was also told hearing loss was an uncommon side effect.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#11487 07-31-2007 02:09 AM | Joined: Jul 2007 Posts: 5 Member | OP Member Joined: Jul 2007 Posts: 5 | Hi All, Thanks, I had my first treatment today and I started with a visiy to the Specialist who read my results of the Blood Test and then sent m e off to the Chemo Suite for me Councillor to explain the treatment, Started at 3.00pm and had a break at 4.oopm so I could have my RT, then back to the Suite for the Main bits Manitol(30 minutes) then a Saline Drip(5 minutes)then Cisplatin(60 minutes) then for desert Potassium/mangonese(80 minutes)then a final flush and left the suite at 9.00pm, Boy what a day? now I have to have RT for the next 33 days with Chemo every Tuesday. Will keep you up todate on the side effects Thanks again TREV | | |
#11488 07-31-2007 08:27 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Good luck, Trev. I hope you are doing well! Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#11489 08-01-2007 03:35 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Hearing loss and other hearing issues is NOT a "rare" event with cisplatin, in fact, it is considered one of the two most common side-effects and any doctor saying otherwise is not being forthcoming. I am not in the habit of posting material that cannot be backed up with data -- so here it is: The RX drug page www.rxlist.com/cgi/generic/cisplatin_ad.htm writes: "Ototoxicity - Ototoxicity has been observed in up to 31% of patients treated with a single dose of cisplatin 50 mg/m2, and is manifested by tinnitus and/or hearing loss in the high frequency range (4,000 to 8,000 Hz). Decreased ability to hear normal conversational tones may occur occasionally. Deafness after the initial dose of cisplatin has been reported rarely. Ototoxic effects may be more severe in children receiving cisplatin. Hearing loss can be unilateral or bilateral and tends to become more frequent and severe with repeated doses. Ototoxicity may be enhanced with prior or simultaneous cranial irradiation [note this]. It is unclear whether cisplatin induced ototoxicity is reversible. Ototoxic effects may be related to the peak plasma concentration of cisplatin. Careful monitoring of audiometry should be performed prior to initiation of therapy and prior to subsequent doses of cisplatin." (In the latter case, how often does this occur?) A recent paper by Rademaker-Lahkari et al, 2006, J. of Clinical Oncology 24 (6) is "Relationship between cisplatin administration and development of ototoxicity" They write "Cisplatin is the most ototoxic drug known..." and note that a mean incidence of hearing damage is about 33%. However, since cited rates varied so much, they looked at whether dose and even, timing of doses, had a role as well as other factors. Their conclusion was that weekly doses were les apt to cause hearing problems compared to every two-week doses. Anyone starting cisplatin therapy should take a look at their conclusions, as they give other risk factors which might make cisplatin not the best drug for some. (The other major side effect is nephrotoxicity, with a rate of 28-36% with single dose of 50 mg/m2 and "renal toxicity becomes more prolonged and severe with repeated courses of the drug. Renal function must return to normal before another dose of cisplatin can be given." per RX web site above) Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#11490 08-01-2007 05:23 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Your math is faulty - 31% does not constitute a "majority". Practically all drugs have the potential for some form of adverse effect, especially ct drugs. It doesn't negate being vigilant and proactive with your treatment and carefully watching for side effects and notifying your oncologist immediately of any changes.
I still maintain that spreading fear is not the purpose of the forum. Many here have had Cisplatin without any serious side effects other than nausea.
PS I did the same Google search you did.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#11491 08-02-2007 01:22 AM | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Let me jump into the fray here. We are in the midst of establishing a treatment plan and this hearing issue hits very close to home. Bill has a significant hearing loss in his right ear since some unknown factor (possibly a vascular incident)in late 1999 left him with short term incapactating vertigo (that resolved within a week) and longterm hearing loss. After consults with all our docs (primary, ENT, RO, DO) we have decided to go ahead with weekly Cisplatin treatments as we feel the need to hit this thing with all we can and worry about the hearing later. Bill has decided that dealing with a hearing loss (by the way, he has no sight in his left eye from an industrial accident 30 years ago...he passed FAA flight exam for pilots license with all of this!) is by far better than the specter of this cancer returning.
We are, of course, worried but have decided that when we come to the end of this process (no matter the outcome) that we did everything we could to have a good outcome. No regrets hopefully.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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#11492 08-02-2007 01:44 AM | Joined: Jul 2007 Posts: 45 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2007 Posts: 45 | Hey Trev! As everyone's mentioned, people suffer the side effects differently. For me - i had my Cisplatin/5fu combi every 21 days. I suffered with tinitus (still do, but no hearing loss), extreme nausea & vommiting & antiemetics didn't work for me (except for Lorazapam but that sent me away with the fairies!) Mouth sores, nose sores, nerve damage in my hands and feet, and a fair bit of hair loss. But i DID have a high dose due to suspicious nodes on my lungs, and as i'm young and can apparently tolerate it?! Basicaly i got everything going and invented some of my own for the sheer hell of it! But as you know, i came through it & i bared up cuz i had to! & i reackon you're tough enough to take it on the chin! & now i feel fantastic! All the best, Michelle
Undifferentiated Nasopharyngeal Ca. T3N1M0 stage: IIb. diagnosed: June 2006. 6cycles of high dose chemo (Cisplatin & 5FU). 6 & half weeks (33sessions) radical R/T
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