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#190280 07-17-2015 02:53 AM
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JuliaA Offline OP
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39 year old son just diagnosed with Maxillary SCC. Dr. says in his palete/bone and in muscles at the back of throat. He will be starting 7 weeks of chemo and radiation, surgery not an option at this time. Hoping to get some help/hope and moral support from this group.


Julia
JuliaA #190281 07-17-2015 05:32 AM
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I am sorry you have to be here, but I do wish to welcome you to the family. I see that you are in Ontario, where is your son being treated? Is he at Princess Margaret Hospital?

The chemo-radiation combination is tough but doable. He will need to stay hydrated all through (2 liters of fluids a day at least, if not more). The hospital will send him to get his teeth and hearing checked. He may want to eat as much of his favorite foods as he can since it will be a while he will be able to do this once treatment starts. It also won't hurt for him to put on some weight in preparation for the ordeal as he will lose weight.

Please come back whenever you have questions or just need to vent. There are a number of us Canucks on the forum. I hope we will be able to do some handholding.


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.
JuliaA #190282 07-17-2015 05:43 AM
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Welcome to our family, Julie! Im very sorry about your son. You are in the best place to get info and support to help both you and your son. Stick with us and we will get you thru whatever lies ahead.


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
JuliaA #190285 07-17-2015 03:54 PM
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Glad you found this great place to be, Julie! There are so many wonderful, knowledgeable and compassionate people here to help you and your son. My son was only 33 when he was diagnosed with SCC. That was in 2006 and he is still here and doing well! I found OCF after Paul had started radiation and if I had not had the help and guidance I found here, I don't know what would have happened to us! As mentioned above, it really is important to stay hydrated. Stay close to us here, check back often and let us know what's happening.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



gmcraft #190289 07-18-2015 04:29 AM
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JuliaA Offline OP
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Yes Gloria, he lives in Toronto and will be treated at Princess Margaret. He can't chew so putting on weight prior to treatment won't happen. I will tell him about staying hydrated, thanks all for the support.


Julia
JuliaA #190290 07-18-2015 05:40 AM
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Julia, if your son is able to swallow, he can drink his calories. There are many over the counter drinks available like ensure or boost. In the US, they can be found in most grocery stores or pharmacies. Or, you can always order thru Amazon (please use the OCF link).

I cant stress enough how important his intake is. For most patients, rads isnt easy. Many patients struggle with significant weight loss due to their swallowing ability being compromised during treatments. This leads to malnutrition and dehydration which can mean hospitalizations. Ive been down that road way too many times, myself. When in that state, the patient feels terrible!

I would also suggest asking the docs about a feeding tube. If you son already has problems with eating, rads may only make things more difficult. Think of it as a temporary tool to get him past the rough spots for a few weeks, maybe months. I was resistant to getting one but my docs talked me into it. As a newly diagnosed patient, many feel they have few if any choices so when presented with the feeding tube they decline. Ive noticed from years on the forum, many male patients are not open to using the feeding tube. Its an option that could be a very important part of his treatments. It will help keep him hydrates and nourished, he can even put his medicines thru it too.

Your son can also get extra hydration thru out his treatments. Here in the US a prescription is required and its done in the hospital chemo lab. The patients who get a couple bags of extra fluids generally seem to feel a little better while going thru treatments. Check with the doc about this as well.

Hope I didnt overwhelm you with TMI. Im just trying to help prepare you both for whats coming up. Hopefully your son will be one of the lucky ones who sail right thru their treatments without many of the side effects.



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
JuliaA #190292 07-18-2015 06:01 AM
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Julia, if your son can swallow, like ChristineB said, you can get him to get his calories from smoothies. He should already have a dietitian assigned to him at Princess Margaret. He should get an appointment to see her and discuss his eating difficulties with her. She can advise him on what to do and maybe arrange for him to get a prescription to buy Neutron/Boost/Ensure. They cost much less with a prescription. He will be given a set of swallowing exercises to do on a CD. He should start doing them religiously. My husband was on a feeding tube for two and a half years. It was his diligence that kept his swallowing muscles intact when his esophagus was finally opened.

If you need a blender, you can consider getting a Vitamix from Costco. It is the cheapest I could find. You can check out the machine using the link on this website on the right hand side. I am just not sure if you go through OCF that they will ship to Canada.

My husband has been treated at PMH for the last two and a half years. We have found the doctors to be really knowledgeable and everyone very kind and helpful. I am sure that is what he will find too.

If you have further questions, please do ask.


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.
JuliaA #190295 07-18-2015 09:36 AM
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In addition to what has been said, OCF has great page links for the complications of treatments covering just about every topic.

http://www.oralcancerfoundation.org/complications/

Similarly, I like to break down treatments into several areas for my compliance, some of which, if not all, relate to one another, in order to get through treatments. A dysfunction in one area sometimes can cause a domino effect, and affect all

Adequate nutrition and hydration
Impeccable Oral Care
Neck Skin Care
Pain Control
Mucocitis Control
Infection Control
Dry mouth/Rope Mucus
Nause and Vomiting Control
Adequate Sleep/Rest
Light Exercise, Walking, Meditation,Yoga
Support, Assistance, Anxiety Care
Energy Conservation
Caretaker Care/Support



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 #190297 07-18-2015 02:15 PM
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PaulB, that list is excellent.


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.
gmcraft #190301 07-19-2015 03:57 AM
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Posts: 11
JuliaA Offline OP
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My son has not had his appt. at Princess Margaret yet, I will get him to inquire about a script for Ensure/Boost when he does. He has been buying it, he can eat mushy foods but his appetite is not very good. Dr. now who originally said no surgery now says that in consultation with other Drs. surgery might be of benefit??? Perhaps they will take out the large tumor and then use radiation and chemo to get the rest, not sure, we should find out next week. Hope they do something soon, it is very painful.

Julia


Julia
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