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davidcpa #116838 05-17-2010 08:10 AM
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Thanks David. A good suggestion. I will talk to my younger brother who is with him now .Tomorrow they are doing the PEG tube.I will be there from next week for 4 weeks and monitor it myself.


For Dad
Age: 68
Tobaco user and Smoker.
Stage: T2N1M0 , Detected 03/16/2010,Surgery : 04/21/2010
IMRT Radiation (6 weeks plan)+ Carboplatin (Weekly Dose) Started on 05/19/2010
Completed on 07/12/2010.
subujee #116917 05-19-2010 05:09 AM
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David, As per our request the doctor decided to an baseline hearing test and found my dad had already an small hearing loss, which he never reported. So, the doctor has changed the cisplatin regimen altogether. He is now starting with Carboplatin 280 mg from the get go and in few hours. So, is this the right approach and is Carboplatin more effective or similar to Cisplatin? or they should have pursued it as a combination?.

Last edited by subujee; 05-19-2010 05:10 AM.

For Dad
Age: 68
Tobaco user and Smoker.
Stage: T2N1M0 , Detected 03/16/2010,Surgery : 04/21/2010
IMRT Radiation (6 weeks plan)+ Carboplatin (Weekly Dose) Started on 05/19/2010
Completed on 07/12/2010.
subujee #116918 05-19-2010 05:34 AM
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The chemo docs I have talked all have said "Carboplatin is just as effective as Cisplatin but without the nasty side effects." So that obviously led to my next question...then why do you continue to use Cisplatin? The response I get is that Carbo has never been tested to the extent of Cis. Hey remember I'm not a doc so this is a question you need to ask your chemo doc.

Knowing what I have learned from my experience and this site I don't think starting off with Carbo would bother me with an HPV+ connection. My only reservation is that his cancer is most likely linked to tobacco and those prove more aggressive than say the HPV+ type.

With the chemo we basically see 2 different delivery choices, 3 big bags or 6 smaller weekly bags. I don't know the statistics involving HPV+ vs HPV- but mostly all here with the 3 big bag method start with Cis and some are only able to get 2 out of the 3. Some are then switched to Carbo for the 3rd and some don't get a 3rd of anything. For those that have gotten the weekly doses I don't recall any starting off with Carbo and I don't recall any not completing the 6 week treatment nor even switching to Carbo at some point and I also don't recall any complaining of the hearing issue in the weekly program.

So to sum up my wandering thoughts... I would question why with the weekly program he wouldn't start off with Cis and if he experiences any ringing then switch him to Carbo for the remaining. Again I would only push for this because of his likely tobacco connection.

Maybe Brian will add his wisdom.


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.
davidcpa #116923 05-19-2010 07:10 AM
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I spoke to my brother again just now.His case is not HPV case but mostly due to his tobacco habits. Actually, as per Audio tests , his hearing loss on right side was already rated as Moderate Severe.By the time i called , first big bag of Carboplatin is already started. Now, is there any chance they do Carboplatin first and then cisplatin ? or now since Carboplatin is already started they cannot do Cisplatin.
Brian any thoughts.

Last edited by subujee; 05-19-2010 07:12 AM.

For Dad
Age: 68
Tobaco user and Smoker.
Stage: T2N1M0 , Detected 03/16/2010,Surgery : 04/21/2010
IMRT Radiation (6 weeks plan)+ Carboplatin (Weekly Dose) Started on 05/19/2010
Completed on 07/12/2010.
subujee #116932 05-19-2010 02:30 PM
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Never heard of anyone starting with Carbo and switching to Cis. In fact I haven't heard of any that I remember starting with Carbo period but I'm sure there are some. I know my RO is about to start a trial for HPV+ patients where he is reducing the amount of radiation to 65 gys and using Carbo instead of Cis but that's a trial.

Again to confirm he is getting 6 weekly bags of chemo? When you said Big bag I think of that as in the 3 bag treatment not the 6 I think he is getting.


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.
davidcpa #116933 05-19-2010 02:46 PM
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David,
There have been other people on this board that started with Carbo along with people who had no chemo. Do you really think the doctors would be doing this if they thought it wouldn't work as well? While I think she might ask some questions, I don't think we should be second guessing doctors treatment plans. We are not doctors, much less medically trained.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #116941 05-19-2010 04:43 PM
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David,I think you are right , its going to be 6 bags of Carbo. I will reconfirm it. Well, Eileen I agree that we shouldn't be second guessing doctor's treament plan. But, thanks for david suggestion we went for a request of audio test. Since my Dad never reported the issue of hearing loss which he had the doctors would have continued with Cisplatin and never checked for hearing issues. So, I feel being pro-active helps and this forum is tremendously helpful with patients sharing info.
My research today , I found that some studies has indicated the scenario where Carboplatin is replaced with Cisplatin, when there is a clear indication of pre-existing hearing loss. And it seems , its still an ongoing debate between Cisplatin vs Carboplatin. And most studies favoring Cisplatin becuase of more potency. The wikipedia abstract says as below:
"Relative to cisplatin, the potency of carboplatin is less potent: depending on the strain of cancer, carboplatin may only be 1/8 to 1/45 as effective. The clinical standard of dosage of carboplatin is usually a 4:1 ratio compared to cisplatin; that is, for a dose that usually requires a particular dose of cisplatin, four times more carboplatin is needed to achieve the same effectiveness. The stable property of carboplatin is a mixed blessing: once uptake of the drug occurs, its retention half-life is considerably longer than cisplatin, but it is also this inertness that causes carboplatin to go right through the human body, and up to 90% of the carboplatin given can be recovered in urine."





For Dad
Age: 68
Tobaco user and Smoker.
Stage: T2N1M0 , Detected 03/16/2010,Surgery : 04/21/2010
IMRT Radiation (6 weeks plan)+ Carboplatin (Weekly Dose) Started on 05/19/2010
Completed on 07/12/2010.
subujee #116959 05-20-2010 05:15 AM
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Eileen,

Where did that come from? You must not read my posts as I often remind people I'm not a doctor and I always qualify my statements in case I have forgotten previous posters treatments.

And as far as questioning doctors, my God we do that every day on this site and many many times the people on this site have been directly responsible for beneficial "adjustments" to a previously decided treatment plan. Every single time we recommend a second or third opinion aren't we second guessing the first doctor? Every time we recommend a different pain med or a different dosage aren't we question their doctor? Every time we suggest a PEG or not a PEG, we do the same thing. Every time I read that a likely HPV+ patient HAD a RND and only 1 out of 24 nodes came back positive I wish I had been there to recommend a second opinion from a CCC that likely would have avoided unnecessary surgery. I can go on and on about the many ways we question their doctors.

The sad/tragic facts are that there is a great disparity of knowledge within the oral cancer treating community of doctors and If I have goal on this site and that is to compare a posters treatment plan to what I think a CCC might recommend and if I think it might be different at a CCC then I encourage another opinion.

Putting that aside, my main concern still exists and that is this cancer is most likely caused by tobacco and certainly is HPV- which has proven to be more aggressive and Cisplatin is still the chemo of choice and we usually get one shot at killing it so IMO (and by the way that's what all of our posts are) I would opt for Cis especially with the weekly bags which seem to be less toxic at least until I saw it was affecting my hearing as I would rather not hear too well if it meant I would continue to live.


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.
davidcpa #116963 05-20-2010 07:42 AM
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David I think your viewpoint is right about Cis. My brother spoke yesterday with a fellow with one of the hospitals in Florida and he had the exact same words " I would rather not hear too well if it meant I would continue to live".
The doctors team who did surgery and oncologist treating him first had exactly recommended a Cis weekly bag. It all happened when we went to this new set of doctors which are close proximity to where my dad lives.
But, anyhow they have started Carbo with 6 bags. My brother is trying to talk to other doctors and getting some suggestions. And now lets hope for the best.



For Dad
Age: 68
Tobaco user and Smoker.
Stage: T2N1M0 , Detected 03/16/2010,Surgery : 04/21/2010
IMRT Radiation (6 weeks plan)+ Carboplatin (Weekly Dose) Started on 05/19/2010
Completed on 07/12/2010.
subujee #116977 05-20-2010 02:09 PM
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Posts: 2,152
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David,

It was this statement that I was questioning:

'In fact I haven't heard of any that I remember starting with Carbo period but I'm sure there are some.'

While we do recommend second and third opinions all the time, I didn't read your post that way. It sounded more like you were stating that this doctor was all wrong and he had to have Cisplatin because of the tobacco connection.

My cancer was tobacco related and I didn't even have chemo. They didn't feel that the 5% improvement I might get warranted the side effects. I have no clue what cocktail they were using back in 1997. Obviously the improvment is much better these days and they would probably recommend chemo.

I'm sorry if I offended you but it sounded like you were making a statment that were not true.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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