| | Joined: Sep 2014 Posts: 27 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Sep 2014 Posts: 27 | Thanks for the feedback gang. It is just crazy how great his voice is now, and swallowing is easy. We just started week 3. We are almost 1/2 way there. I knew the answer in my heart, but I just wanted to throw it out there. Just in case there was somehting to it. I know the road is going to be tough soon, but at least I have all of you to talk to and know you are supporting us.
Thank you all from the bottom of my heart!
Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Oh Sandy, your initial post made me want to shout out No. As has already been explained that would have been a sure fire guarantee for a recurrence going forward. I'm so pleased that you did not really consider this as an option. Kris had a clear PET 3 months post rads and Cisplation. But, there it was again just a few months later. He was HPV positive. Treatment must always be completed to maximise benefit. I hope the next few weeks go well. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Sep 2014 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2014 Posts: 27 | Thanks Tammy,
I knew we had to finish to treatment, but he feels so good, he wanted me to investigate it. Our team of course said we had to continue until finished.
Have a nice day. I am so happy that Kris is clear now.
Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14
| | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | We just left our appr with the chemo doctor and he said "you got through the 2 big bags of cisplatin. Your kidneys look good.. Your white blood cells are down. With all of your side affects we don't recommend the third bag. We do recommend you do carboplatin on Friday if your blood tests from today come out good." Has anyone had 2 big bags of cisplatin and 1 carboplatin?
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 |
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | 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 | Sorry, but I do not remember anyone here being switched to the carboplatin due to their white counts being low. Ive seen the chemo changed because of hearing problems being reported.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | I had induction chemo which was three cycles of cisplatin, taxotere, and 5FU. During radiation I received weekly carboplatin which I did not feel at all.
The MO stated it was far less toxic in reduced amounts on a more frequent basis and being a platin it still served the purpose as a radiosensitizer to the radiation.
In general, I believe both are effective while some give the edge to cisplatin but carbo does the job just fine. There are studies with varying results so believe what you may.
Good luck
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | He has had many problems like too much acid.. The other day we rushed him to ER because he was throwing up buckets full. I think he should do the carboplatin just because it would be more reassurance. But sometimes I worry. The doctor never mentioned carboplatin until now. I trust the whole staff but sometimes I'll have thoughts in my head like "they said if he did 2 cisplatins he will be good. Why do they want to do carboplatin now too? Is it for the money?" Then I tell myself to stop thinking like that because he did have extra nodal extension and the more he treates the better.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Kris only had 2 doses of the Cisplatin . His White cell count was too low for the 3rd dose. There was never any talk of switching him to Carboplatin. I would think the low white count would preclude it too.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Maybe it's not low enough but combined with the other issues he's having maybe they're pushing for carbo as its less toxic. Ultimately - many people get through this fine with just 2 - if you are concerned and want a 3rd bag of chemo - then I would go with the Drs. suggestion and do the carbo..l hugs and best of luck... Almost there...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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