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#195606 01-18-2018 10:43 AM
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Hi everyone.

My mom met with her oncologist today and they discussed her upcoming chemoradiation treatment and she had her mask done.
The oncologist told her she will get 35 RAD sessions over the span of 7 weeks and will also be getting chemo in two doses starting from week 3 and then once more on week 6.

From the literature I've read this doesn't seem standard to me? We were expecting that she'd get three big cisplatin doses starting from week 1. Also if she's only getting two doses wouldn't it make more sense to get them on week 1 and week 3 when it's easier to handle because the radiation damage isn't in full swing yet. I told her to ask what exact chemical they'll give her and why the 2 doses.

I was wondering if any of you guys maybe have some knowledge or experience on this, thanks in advance.


Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
PortSpan #195607 01-18-2018 12:33 PM
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You are correct!!!... 2 doses of chemo is NOT standard in the US. Most patients will get cisplatin with their rads. Sometime Erbitux AKA Cetuximab is used instead. The best way in my opinion is to go with the smaller weekly doses. Most patients find its much easier to tolerate with getting small doses every week. I was so sick after the first dose of cisplatin my oncologist cut the second dose in half. After the second smaller dose 3 weeks later, I was still very sick so the third dose was cancelled completely. This is the more common method of doing the 3 big bag method of chemo. I would definitely question why the treatment plans chemo component was different than how most patients are treated.

Heres a link to the main OCF site where you can read all kinds of info that will help you with your mother. Im sure you can get much more info about chemo there. This can also get printed or emailed to your mothers physicians if they balk at being questioned about their way of doing chemo. You can also do an internet search for specific treatment guidelines where you will see flow charts for OC patients that is based on their exact diagnosis.

Good luck!!!

Main OCF Site... Understanding/Treatment section




Christine
SCC 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 smile
PortSpan #195608 01-18-2018 01:05 PM
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Thank you for your response. It's as I suspected frown
I'll definitely tell her to ask her oncologist about this. Sadly my mother is getting treated in Bosnia and the facilities here aren't nearly as well equipped as all the cancer centers in the USA. We may have no other choice in treatment.

UPDATE: I've talked with my mom and well... there's something quite strange going on. First of all her oncologist moved down her node status from N3 to N2b based on the pathology. This is some positive news I think. Her pathology results said that her biggest node was 3.3 cm in diameter but I assumed they put her as N3 because some of them are matted. As for the chemo my mom talked with a doctor friend and she suspects that they decided to increase the rad days from 30 to 35 in exchange of removing one chemo session.

It's all very odd to me, I urged her to at least ask the oncologist to explain their reasoning behind this. Perhaps they can at least move the 2 doses earlier starting from week 1 and then decide near the end what to do with the 3rd dose if she handles the toxicity well.

Christine you mentioned that you ended up doing only 2 doses max because of the toxicity. Is this common? Does it influence on the possibility of future recurrence? Perhaps my mom's oncologist believes the toxicity of three doses would be too much for her to handle. I've also read some scientific articles that concluded that the 3 big doses tended to have slightly better survival rates than weekly carboplatin or cisplatin.

Thank you in advance for any advice you may have for me. I have no idea why everything about this is so unclear it's almost as if I have to be my mother's own oncologist reading about chemotherapy and treatment guidelines. She's already annoyed that I'm spending so much time reading up on everything and that I'm stressing her out because she has 100% faith in her medical team's decision and doesn't want to stress herself out in thinking if some other treatment plan would be better for her.

Last edited by PortSpan; 01-18-2018 02:39 PM.

Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
PortSpan #195609 01-18-2018 06:47 PM
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My husband got only two doses of Cisplatin because he developed deep vein thrombosis after the second dose, first in one leg and then in the other. His chemo doctor said she would not give him the third dose because he was in such bad shape. The neutrophil was so low that he could not even start getting the blood thinner injection for a couple of weeks even though his legs were both swollen and he could hardly walk.

Another patient we met at the hospital also did not get the third dose because his white blood count was so low. If they waited for his white blood cells to recover, he would have to get his chemo after his radiation finished. At that point, apparently, there was no reason for him to get a dose of chemo. That makes sense to me if the chemo works as a radiation sensitize and does not cure cancer on it’s own.

From what members say on this forum, it does seem that some people only end up getting two doses because of toxicity.

I live in Canada where the government pays for meidical care, but that also means it was not possible for us to ask for a weekly dose of chemo instead of the three big bags.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
PortSpan #195610 01-19-2018 03:30 AM
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I've found some guidelines mentioning 2-3 big doses of cisplatin http://www.saskcancer.ca/Oropharynx%20CPGs%2005-15. (mentioned on page 5)
So perhaps this may not be so uncommon? Reading up on it there does seem to be lots of discussion about what the best way of treating oropharyngeal cancers some arguing for less toxic chemo drugs, other arguing for RT alone if certain features are present. In any case it's definitely something to discuss with the oncologist. Thank you all for the responses, if anyone else could chime in with some knowledge or experience it'd be greatly appreciated.

Last edited by PortSpan; 01-19-2018 03:31 AM.

Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
PortSpan #195611 01-19-2018 07:07 AM
Joined: Jun 2007
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I wrote you a long reply last night but my computer had some kind of glitch and I lost the whole thing. Im sorry but I cant remember exactly what I had written. All I can remember is its pretty common for patients who are getting the 3 big bag method of chemo to not get the third dose. Im sorry but I do not know how skipping the third dose will impact patients. I tend to avoid paying much attention to numbers. My odds of survival were very slim during my 3rd round of OC. With the odds stacked against me I ignored the numbers and kept telling myself I must survive no matter what numbers say. Luckily I got thru it and that was my last cancer diagnosis in 2009.

The link you posted was to a Canadian study. Different countries have different guidelines with how they treat patients. Unfortunately OC is not a type of cancer much research has gone into. The big money always goes to research for the big cancers like breast, lung, skin, prostrate. Oral cancer and its treatments are not researched like those other more common types of cancer. OCF began in 2002 and has fought to fund research studies and bring awareness about oral cancer. While great strides have been made but there is still so much more to do to get OC some of the attention the other more well known cancers get. Heres a link to the NCI guidelines where you can see how OC patients in the US should be treated.

NCI Guidelines


Christine
SCC 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 smile
PortSpan #195612 01-19-2018 07:37 AM
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Thank you for your response Christine. I apologize for asking too many technical questions on a forum that's more oriented for support rather than medical guidance, I realize most people here are just normal patients or caregivers with no medical background.
After more research through the american guidelines there have been studies done where one group recieved a slightly higher daily dose of radiation coupled with 2 doses of cisplatin and the other recieved a normal dose of radiation coupled with 3 doses of cisplatin and the overal survival rates were found to be similar.

Certainly a lot of questions for the radiaton team and the oncologist.


Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
PortSpan #195613 01-19-2018 09:43 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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No need to apologize! We all are here to help each other with our shared knowledge.

You just never know what different facilities, doctors, countries will go by with medical guidelines. They could be using brand new unreleased data or the physician and treatment facility could be stuck in the 90s with little updated knowledge. Yes, far too many questions for the average person without a medical background to remember, ask the correct medical pro and get answers to. We all just do the best we can with finding the best care and putting our faith in those capable hands.

Best wishes with everything!!!


Christine
SCC 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 smile
PortSpan #195616 01-19-2018 10:10 AM
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Posts: 9
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Posts: 9
You're completely right. None of this seems like an exact science. Her current treatment plan doesn't sound too off from the recommended CRT protocol. Perhaps they have their own statistics why they believe 2 chemo doses would be enough.
I have read that there's plans to have trials where they try to give lighter treatments to HPV+ oropharyngeal patients because they tend to respond well to radiation.

I doubt my mother's case qualifies for that though because her HPV status is still unconfirmed and she has matted nodes (does anyone know anything about that btw, when I found out those studies that showed people with matted nodes have high chances of distant metastasis it really crushed me).

In any case we should try and focus on nutrition now that her treatment starts sometime next week. I've already read your posts of minimum calorie and water goals during treatment. Thanks for that. Her oncologist also mentioned water intake is extremely important especially on chemo days.


Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018

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