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Joined: Apr 2013
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Hi Hellion,

I was going to put this in a PM, but thought (risky business, I know...) that it might be of general interest as well.

My take on the Cisplatin vs Carboplatin is this: no one knows for sure

It's true that the former has harsher (more severe) side effects and that the later is a reformulation that reduces the severity of the original.

Beyond that, things are murky. The reasons are several, but primarily reduce to "variability." Variability in the way the substances affect the patients, exacerbated by the variability in the patient outcomes; and variability in the experiences of different oncologists to the same (resulting in different conclusions based on the data available to them).

I don't think you will go wrong with either choice; but having made that choice, I wouldn't give the decision you made another thought, your reasons and reasoning are sound, both chemos are known to be effective.

Bottom line, I would have done what you did under the circumstances you experienced.

Best of luck to you, Hellion,

Bart

Last edited by Bart; 04-23-2014 07:58 AM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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I thought there was a post with Carboplatin vs Cisplatin, which I may have shared a link with. I know there are for Erbitux vs Cisplatin, and Cisplatin weekly infusions vs 3 large bag infusions, but can't find the other. Anyway, to add to the chemo wars lol, here is some info on Carboplatin, also one mentioning combination with taxol, brief mentioning with head and neck cancer.

http://packageinserts.bms.com/pi/pi_paraplatin.pdf

https://theoncologist.alphamedpress.org/content/3/1/15.full


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Mar 2014
Posts: 110
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I appreciate that, guys. In some ways, I would have had to fight pretty hard to stay on the Cisplatin, anyway. My chemo oncologist had pretty much decided that I was not responding acceptably and that it was simply more dangerous to continue than she felt comfortable with, hence the switch. Regardless, what is done is done, and I won't look back.

In many ways, the complexity of the argument is steeped in some subtleties I don't really have the energy to research thoroughly. Instead, I will move to this regimen, I will continue to do what I can do and hope for the best and I will continue to do what I can to win this fight.

One thing for sure, though I will do almost anything to win, I am not nearly educated enough in these medicins to demand she stick with Cisplatin when she feels it will do as much harm as good.

I do wish these treatments were more absolute, although if they were, I suppose, we wouldn't all be unique little snowflakes!

Thanks for all of the input!!

The Hellion

Last edited by TheHellion; 04-23-2014 05:24 PM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Mar 2014
Posts: 286
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Some of this science is not exact and it is yet to play out. So many variables, its just a moving target. The docs make educated judgements based on a lot of factors, I tend to just put myself in their hands and get their help to manage the side effects. Between that and calling on the big guy upstairs all we can do is stay strong and wait for the hand we've been dealt to play out.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Mar 2014
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Rocked the second TaxolCarbo chemo today -- going to use the new cocktail of anti nausea to offset it. Thank you to those that advised Mucinex. I added that to the regimen and am hoping that will help with the mucus based vomiting I had this weekend. Last 10 rads to go. Hoping it all looks good, no surgery is required and that we get it all with these treatments. If not, we'll take those step and make those decisions then. Right now I'm terribly internally focused on getting through my treatments - selfish, I admit, but it's what I have the energy to focus on.

Thank you all for your kind words of support, especially as the road steepens for both myself and my wife. I know she must be tiring of the entire stupid thing, but she keeps plugging away, dedicating so very much of her own strength to supporting me. I'm really quite lucky to have her -- have I told you all that? A lesser person would have bailed out with one of a million good excuses by now!

Hope the others on their journeys are traveling well. We can do this, and I know many of you, and Ozmojo in particular, are kicking ass, taking names and putting me to shame with their courage and strength. Still, I take pride in doing what I do and have done! Let's all get through this!!


Reminds me of a lyric that keeps running through my head -- I use it to invoke smiles whenever my torture team does their thing (and yes, I know they are there to help save me, but they ARE STILL a torture team smile ). For some reason, it plays in the back of my brain, reminding me that I get stronger, not weaker, with every treatment.

"When cometh the day we lowly ones
Through quiet reflection and great dedication
Master the art of karate
Lol we shall rise up
And then we'll make the bugger's eyes water"

These treatments are my OCF head and neck cancer karate!! Watch out enemies ours -- when we get through this, we'll be damned scary!!

OK, enough random and probably completely unintelligible thought,

Safe journeys, all

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jan 2014
Posts: 31
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My mom has been rocking the taxoter and Carboplatin combo (previous kidney issues precluded Cisplatin). No hair. But no nausea. She says she'll take it.

Love your attitude! Keep getting stronger!


Caregiver to mom Chris, symptoms started 12/18/13. Biopsy 1/18/14, Diagnosed t2n2 2/3 2014. 3x Carboplatin and Taxotere finished 4/21/14. Chemo/Rads 8 erbitux 36 rads began 5/12/2014. End 6/20/2014. Pnuemonia 6/23/2014. 1 month in hospital 3 in rehab. PEt NED 11/8/2014, T3 recurrence DX 3/4/2015. Hemiglossectomy/mandiblectomy 4/27/2015. 30 rads end 07/24/2015. 4 years NED.
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Indeed the road steepens. We only have two weeks to go but it feels like the summit of this mountain is still a long way off! Especially as the side effects worsen (and will continue to worsen after the rads finish).

A better analogy is how do you eat an elephant? One bite at a time. We have ten more rads to go and one chemo. After that its not treatment anymore, its recovery. We recover and start taking our lives back. One bite at a time.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Mar 2014
Posts: 110
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Bit by bit, my friend. We're getting close, my brother! Sounds like you're holding up fairly well as well. It's tough but we're closing in on the end of our radiation and ai know we're going to make it -- maybe with tattered colors, but we will make it!



SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Mar 2014
Posts: 110
Senior Member (100+ posts)
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Joined: Mar 2014
Posts: 110
So,

Haven't been updating as much as I should. Turns out the mucus nausea is my new obstacle. The toxic phlegm is making me ill, literally. If I don't actively cough it out, it gets swallowed and drips down, etc. and makes me vomit. If I cough it out too much, I trigger my gag reflex and vomit. I swear I am the most delicate flower in the known universe!

So, been spending a lot of time mitigating those symptoms -- finally hit on some combinations of Mucinex, anti-nausea meds and a very regimented cycle of hourly hacking that means I am not vomiting (as often).

This cancer really does keep you on your toes, doesn't it? You get one thing sorted out and another thing rises up to take its place. Ah well, nearly done now. Finished my last chemo and Monday is my last radiation treatment. That's right boys and girls, as of COB today, I have 1 rad left!!!!

Let the healing begin.

Or so I hope smile.

Now maybe I'll be able to document and record the journey with a little more fluidity and consistency. Between staying busy, my self-care regimens, my general fatigue, and just being the lazy bastard I am, I really never did record things as I went -- I'd like to record them after, though. It's been (and continues to be) a highly complex journey -- in some ways every bit as tough as I read it would be. In others (thankfully) it has not been nearly as bad as I heard. In a few it has been a walk in the park. It's a highly individualized process, I now see, and what sucks for some does not equally suck for others.

So, that's where The Hellion stands today - i.e. still standing. Sometimes barely, and the last 2 rads may yet finish me, but I don't think so. I'm confident -- I'm going to pull through smile. I'll let you know the final verdict next week.

To those that continue to provide outstanding support and advice -- keep it up -- I thank you and I'm sure everyone else agrees. To those that are undergoing treatment -- let's all stay strong -- we will all get there if we believe we will. It's tough, but let none of us succumb! To those reading this and worrying about your treatment to come, I can only say that for as tough as treatment sometimes is on me, it was waiting to the start the journey that proved most difficult. It is easy to fear the unknown, and hearing the stories can be frightening - believe me, I get that - but the doing is what matters and you can and will do it. I know it's easy for me to say, but really, don't worry about the treatment to come. Follow the advice of the OCF sages and start strong and confident.

Now, let's hope my last two rads don't finish me off or turn me into a raving cry-baby or this post is going to make me look pretty foolish.

I'll leave you with a song -

One of these days I'm gonna change my evil ways
(One of these days)
Until then, I'll just keep riding on and on and on and on and on

Cheers,

The Hellion



SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Dec 2003
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Hard to believe it's almost over, eh? Keep that nasty stuff coming out and even consider a temporary suction machine so you don't damage any coughing muscles. That would really complicate releasing the toxic scum. It will start getting more clear as you start feeling better.

Keep on riding...on...and...on...and...on...


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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