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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Sandy, good job at being aware of the importance of yoru fluid intake. Everything you lose must be replaced, thats not even counting your daily minimum intake you need. This can turn into ALOT of fluids.

You should have anti-nausea meds. Take them around the clock, not missing a dose. Once you get behind the nausea, it seems like its impossible to get ahead of it. If worse comes to worse... there are even suppository anti-nausea meds for those severe cases where its not an option to take meds orally.

Best wishes!!!


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
Joined: Oct 2013
Posts: 58
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7 more treatments. Neck and face hurting. Throat sore. So thankful only 7 more.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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I can barely hold back the excitement 5 more rads to go. Struggling with consumption. Ensure is over rated. Thankful I have a tube! Still waiting for a 2nd opinion on chemo. I miss being me, feeling down and depressed.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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Finished my radiation today! Finally going for chemo consult. Hoping I'm almost done. Any advise on handling chemo would be appreciated. Staying positive!


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
Joined: Dec 2010
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"OCF Canuck"
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So glad you're done !!!!! A big YAY to you my dear!! I found chemo not to be very bothersome compared to rads - I think that very much depends on the chemo though. I am wondering why they are giving it to you post treatment as opposed to with rads?!
If it's cisplatin that's a 50/50 prospect in terms of feeling crappy. Personally I had mild nausea that's it, and my meds kept it in check. It also helped that they kept me in overnight and pumped me with fluids... Not something all hospitals do but they did. So overall It was fine - while a friend of mine was totally sick throughout. So it really depends. You need to find out what they are giving you. As far as I know cisplatin and other oral cancer chemos (carbo) work only with rads. They may give you taxol, 5fu... Knowing that will give you a better idea of what to expect. Hugs and congrats now be patient and heal!!


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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Cheryl- unfortunetly I don't know what kind of chemo. The hospital ( loma linda university)where I had my surgery called me, after reviewing my case, and said they have several chemo options for sarcoma. ( I know I'm technically in the wrong forum, I just relate better). My appt is on the 28th. My local oncologist said there was no treatment. I disagreed and went back to my surgeon. I'm just frustrated because I feel like everything has been drawn out. I want to focus on recovery but then I start the next phase. Ugh! So over it all. Trying to be patient trying to heal.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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"OCF Canuck"
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"OCF Canuck"
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That's okay you are welcome here. The sarcoma might be why they are offering you chemo separately. My hospital has it's own sarcoma clinic - though I am not overly familiar with it. I guess you'll have to wait and see what they are offering and your local oncologist is why we always push for second opinions - what is untreatable to one person is a do for another.

I related a story here a while back - I'll share again.

Ten years ago a guy in Eastern canada was diagnosed with an inoperable liver cancer.

It was deemed inoperable because of location. Wrapped around some important necessary for life liver parts.

He sought treatment locally - they did what they could. His tumor didn't respond. They essentially said sionara.

He sought a 6 month treatment offered in western canada. His cancer had no response.

They said go home.

His wife took him to a naturopath they put him on a healthy alkaline diet. (orgainics - green veggies etc..) he kept hanging in there. At some point over the ten years he moved to toronto with his family. He went for a check up here with a new dr. The dr. told him he though a dr. in toronto might be able to do something for him - he followed up and the dr. said he couldn't what he had was inoperable, but referred him to a new dr. who was doing an experimental surgery for his kind of cancer. (they treated the surgery like a liver transplant - dropped the body temperature, put a proper blood flow in place, and removed the entire liver - then did an intricate surgery to remove the tumor.

Two years later - he is cancer free and said he now can look at a potential future - where before he was just hoping to make it week to week.

sometimes it's all about buying time, or meeting the right person. Not every dr. has the same skill set.

hugs and feel better.


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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Posts: 58
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Thanks Cheryl and what a great story. I applaud every member on this forum. This forum has truly gotten me through some of my darker times. Today was a hard day the pain/burning in my mouth sucks. However I am so happy to be done with radiation. That mask ( to me) sucks more then the pain.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Posts: 5,260
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Yes... The mask sucks in a big way. I am glad you're done. It takes a while to heal. I tried to sleep my way through the two weeks following treatment. Which I pretty much did. For the worst of it I used an Oxy to put me to sleep for about 7 days in total Two at night one in the afternoon before lunch. I drank fully by mouth through treatment so I just talked myself into chugging my ensure four or five times a day, and then rinsed and made sure I kept the area clean.

hugs to you on getting through it. take care


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: Oct 2013
Posts: 58
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Got my 2nd opinion. Cisplatin/Doxorubicin 6 treatments. Follow up ct scans oncologist concerned about possible mets to chest. Previous scan suspect..... not sure how I feel. Thought I was almost done.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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