| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Tarveva aka erlotinib, is a targeted therapy, in a pill form, used for chemo prevention, and long term. It's a tyrosine kinase inhibitor to block the EGFR, working somewhat like Erbitux. I think for any benefit they have to be used for six months to a year.
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: 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 | This is an example of how different treatment can be when comparing treatment plans in different countries.
I hope this works for Joyce!
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | It is really extremely hard to ask questions when the only person you can talk to is the actual patient. I am afraid she might be telling us that everything is okay and hiding other details. The bottomline is that the lesion on the face is still "fresh" after 35 radiation treatments and 7 Erbitux treatments. She told us she will get 2 additional Erbitux this week and another one on the 8th or August. After which they are suggesting oral chemo. I just hope with all the treatment that she has gone through that it will help her. Do lesions in the face get better? What is the protocol for that here? They do not want to do surgery at all. Will that heal and dry up?? Thanks
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Ina, I know you are in a difficult position getting information the way you are. Joyce is lucky to have family members such as yourself who really love and care about her. I know that Erbitux is known to cause a skin rash, sometimes a pretty bad one. Perhaps the lesion could be aggravated by the Erbitux?
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | Hello Susan, It could be. You know Joyce never complains to her children. I asked her, Mom is anything hurting you? She said no. How about the treatment do you feel weak? She said I am okay. After reading all the stories here in OCF it is impossible that she is not in pain. They are adding 2 more Erbitux since the lesion is still fresh. They are hoping that it will get better. I am hoping as well. If she was my mother, I would have called the doctors after each treatment. However, I am just the inlaw. I guess that is a blessing. Thanks again, Ina
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hopefully this helps but the lesion in her face will not HEAL if its still active cancer. How large is it? It could definitely be irritated by the Erbitux rash but of its large I doubt it's part of the rash and irritation. As far as I know Erbitux works by binding itself to the cancer cells and preventing it from growing or spreading, but there are several factors here. Firstly it doesn't work on everyone, secondly from what I have heard it is more effective when given in conjunction with cisplatin, thirdly it inhibits the cell growth and tumor grown, but from what I have read it doesn't kill it - from this you can gather that it is an sensitizing agent for radiation - now radiation works for a certain amount for time after the actual therapy has finished but I was told by my oncologist that there is no point in giving chemo after radiation has stopped - with this type of cancer - since the two work hand in hand - radiation can kill oral cancer, but chemo on its own can't. Finally, I believe Paul mentioned that there are oral chemos you can take after chemo radiation to help prevent a recurrence, but I believe that these would only work, assuming the cancer is actually gone, and not still visible at the site. As far I can gather from what you have told us - the cancer is still there and at some point will start growing again, assuming its not already. Therefore whatever chemo they have planned - unless its palliative - will not have a curative effect. Did they do a ct or MRI to compare the tumors size? So they can tell you if it was Effected by the treatment at all? That would be a good indicator of prognosis... 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
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Cheryl, As Ina has mentioned she is on a really thin and filtered line of communication, having to go through a set of relatives first then having Joyce not fully forthcoming herself. Your passion is great to help but there seems very little ability for Ina to ask and receive answers to any meaningful questions. It really seems she is on receiving end and just gets tidbits here and there. From what I have read it seems simply the cancer has ulcerated to the surface. My recollection is that was going on before Erbitux was started. don
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | Yes Don you are right the lesions or the cancer has ulcerated to the surface [quote=donfoo]Cheryl, As Ina has mentioned she is on a really thin and filtered line of communication, having to go through a set of relatives first then having Joyce not fully forthcoming herself. Your passion is great to help but there seems very little ability for Ina to ask and receive answers to any meaningful questions. It really seems she is on receiving end and just gets tidbits here and there. From what I have read it seems simply the cancer has ulcerated to the surface. My recollection is that was going on before Erbitux was started. don[/quote] Don, You are right the cancer ulcerated to the surface of her right face. That is where all the cancer started (tongue and lower mandible). The purpose of the radiation and chemo was to treat the ulceration and cure the cancer. For some reason the ulceration is not healing therefore they are extending the Erbitux to 2 more sessions. One this August 1st and the last one August 8th. Then Joyce said that the doctor wants her to take oral chemo medication. I am not sure why the inlaws are not calling the doctor directly. I am sure "denial" is another factor. Thanks again for all your help. I will continue to keep you posted. Ina
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Ina,
Unfortunately, if there appears to be no reduction of the visible tumor then it seems the treatment is not fully effective. I am no doctor of course, the only experience is the visible ulcer that was necrotic on the back of my tongue. As soon as I started induction TPF chemo, it was disappearing nearly in front of my eyes. Within the first week it was gone and the neck tumor was visibly reduced too. Just for some reference. don
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | We just received an update from my father-in-law about the last medical appointment of Joyce. She finished 7 + 2 sessions of chemotherapy and 35 sessions of radiation. The doctors are have decided to give her another 4 sessions of chemo every other week for 2 months.
I just learned today from my father in law that the cancer is NOT on her cheeks. Joyce was not aware of the severity of the condition. There truth was there is an intrusion that happened AFTER the removal of her jaw bones. There is still at tumor there that is still visible even after the radiation. If she was strong enough, she would have a radical surgery to remove the right side of her face from the checks down. I do not think they would even consider that at this point.
A big meetings of the doctors will happen late September. They do not know what to do after the next 4 treatments = 7 + 2+ 4 = 13 total.
As far as the nutrition is concerned, she is doing well and maintaining her weight steadily.
In our heart, we know that we have done everything we could for her.
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | |
Forums23 Topics18,220 Posts197,069 Members13,255 | Most Online875 Dec 21st, 2024 | | | |