Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Geline #175031 12-08-2013 04:52 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
TPF Induction chemo is controversial, and many do not go on to complete the full induction chemo cycles, and or Chemoradiation or is delayed due to its high toxicities, including mortalities, but is very effective in killing cancer. One study said as high as 50% did not complete it. I had TPF,and ony did 5 days of TPF IC, which put me in a hospital, and acute critcal care nursing home for 187 days, paralyzed me from the waist down, lost over 110lbs in a few weeks, blinded me, and had 3rd degree burns to the hands, face, inside mouth, esophagus, feet, from Steven Johnson Syndrome, and much more. My local doctors said I was given too much chemo. and many doctors who came to see me for my care, including the burn unit who had to debrige the wounds, and couldn't believe chemo did that. As a result, I was unable to continue further treatment for over a year, and as a result of that, I have had numerous recurrences (8), and still have side effects, 4 years later, which were much worse than radiation. If TPF does kill all the cancer, which it can, it is short term only, and is likely to return within a year, if no further curative treatment is not done, and that is surgery, radiation, Chemoradiation. Carboplatin is an alternate to Cisplatin, with less side effects. Mine returned 8 months later, and then had radiation alone, and so on.

God luck to your son.


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






PaulB #175238 12-13-2013 07:57 PM
Joined: Sep 2013
Posts: 10
Geline Offline OP
Member
OP Offline
Member

Joined: Sep 2013
Posts: 10
Hi Paul,
After my son's chemo, CT scan revealed residual neck lymphnodes , size reduced from 5 to 3.2 and tonsil ca gone.
However the onco was not sure what to do next so he moved on to another team that suggested chemoradiation: 6 low dose cisplatin and 34 IMRT. After 2 cycles of cisplatin, he cannot do it anymore. He was nauseated all the time which continued to the present even without having chemo for 2 weeks already. The rad onco said it was not a side effect of RT. My son is not able to eat well and drink and the doc was not recommending peg tube because according to him, no one has ever put a pegtube when undergoing RT in the country where he lives.


April 2012: R neck inflammation, cured with ATB
April 2013: R neck inflammation recurred
June 2013: Dx: Papillary SCC of tonsil T2N2-3M0
July 2013: TPF every 21 days for 6 cycles (4.5 months)CT tonsil ca gone, R neck residual lymph nodes
November 2013: Chemo/RT (cisplatin/34 IMRT)
Geline #175245 12-13-2013 09:48 PM
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Trilled to hear the chemo resolved the tumors. After the first round of TPF, there was visual reduction in size. After the second, more reduction. After the third round, it was gone and the CT/PET reported "near or complete resolution".

As we know, cancer can only be killed with radiation or removal. I underwent chemo-radiation after the TPF to ensure there was total annihilation of the cancer. I received carboplatin to reduce the side effects while still acting as a radio-sensitizer to the rads.

The RO is right, HNC rads rarely make people nauseated but very common side effect of chemo.

As to the PEG, it is side effects of rads that require one being put in. The damage to the throat from rads makes it for many impossible to eat orally.


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
Geline #175246 12-13-2013 09:59 PM
Joined: Oct 2011
Posts: 225
"OCF Down Under"
Gold Member (200+ posts)
Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Oct 2011
Posts: 225
The clinic which treated my brother insists a PEG be placed before radiation starts. They prefer people having the procedure when they are relatively well, rather than when they are unable to eat properly.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
Geline #175251 12-14-2013 06:41 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
That is the normal course of treatment, as Don Foo did, after TPF Induction chemo, sequetional Chemoradiation, and is the only real cure in this type therapy, chemo is not. The two chemo's may be enough, many here could only do 2 out of 3 large bag Cisplatins also, and that was without IC or had their last weekly cisplatin stopped. The main thing is to finish radiation. chemo acts as a radiosebsitizer to make radiation work better, how much differs with the type of chemo from 2%-20%, maybe higher with other studies. As far as the peg, the nasal tube in an option, and often preferred during treatment, instead if surgery, so I don't know what the doctor is saying. Nausea can be a side effect of radiation. I did radiation alone, and had nausea, vomiting, although pain medications also had a role too. Some patients even have anticipatory nausea just entering the room, thinking about treatment, will make them sick.

Good luck.


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






Geline #175261 12-14-2013 10:11 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
They can put in a peg at anytime - the drs where he is are wrong. I had mine put in at week 2 of rads. It's a simple procedure that in no way is effected by what he's going through he will feel uncomfortable but he's already uncomfortable - he is mildly sedated they go in and put it in place via ultrasound. It takes no more than ten - 15 minutes some people have had it done even further into treatment. Or he can have a nasal gastric tube put in. He needs his nutrition and hydration to heal and fight this otherwise it's a very steep slippery slope he'll find himself on. However is his caregiver there has to fight for him. I had a friend who reacted the same to cisplatin. He was sick as a dog for 7 weeks. Lived with his head in a garbage pail. He sucked it up and insisted they give it to him. They threatened to stop the last one but he managed to keep enough food down that he didn't lose anymore weight (he lost 50 lbs total) not fun but it's in is best interest to push until he gets what he wants. What country is he in? Hugs




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
Page 2 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5