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Joined: Jun 2007
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Chemo is not given in a shot form. Its given slowly, over several hours with meds given before and after to help make it easier to tolerate. Hair is not always lost. I didnt lose mine. Cheryl is correct....chemo alone will NOT[b][/b] cure her.

Here is a link to info about treatments. Please check out the main OCF pages, there is an incredible amount of important info there. Please take the time to go thru this. It could make a huge difference in how she is treated. You both must become advocates for her!
Main OCF pages, TREATMENTS

Last edited by ChristineB; 03-03-2012 08:35 AM. Reason: + link

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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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Good luck with the second opinion Alz! smile and do something nice for yourself and her - I actually does help your mind set to get away a bit.

Also I must apologize I offended one of our members when you posted originally about your dr. Suggesting chemo without confirmation of a recurrence. I agreed and thought he was being proactive. I was basing this on the assumption that the dr. Suspected very heavily that it was a recurrence and that his suggestion of a round of chemo was meant to possibly be prophylactic in nature. By no means do I believe chemo I harmless - it does have many side effects that are unpleasant, can cause severe reactions in people, and doesn't cure tongue cancer - so I believe a dr generally wouldn't suggest it without believing I has some actual purpose (though admittedly some drs do questionable stuff) . So to anyone new reading this - it was an opinion only, and based solely on this particular case - everyone is different and most importantly a good medical professional with experience in this type of cancer generally knows best. If you have any concerns a second opinion from another qualified dr shoud be obtained. We all come with our own valuable set of experiences and can give advice and suggestions on what to ask or where to educatie yourself about this disease - so that you are informed and can advocate for yourself but realistically - we are a forum here to help but not here to offer advice as medical professionals. (though some do a background in medicine) anyway sorry if I lead anyone astray - smile Alz best of luck to you.

Last edited by Cheryld; 03-03-2012 09:03 PM.

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: May 2010
Posts: 638
klo Offline
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Hi Alz and Ida,

Good idea to get away and get your thoughts together.

I can possibly help with what to expect from chemotherapy. Alex and I went through 4 cycles of chemotherapy in 2010. However, different drugs and drug combinations have different effects and whilst most of them cause nausea and vomiting, there are different things you will need to do depending on the drugs they give you. Until we know exactly which drugs are planned for Ida we can't really give you any specific assistance.

When you get to your next appointment (or maybe phone or email your oncologist), ask the doctors to write down the names of the drugs and then you can post them here.

There isn't a lot you can do to prepare anyway, other than to keep the weight up, eat favourite things now because chemo may take away the appetite and make some things taste wrong.

Alex was terrified on his first day of chemo (as was I - even though I knew the procedures and how it all worked). Because Alex had 3 chemo drugs, one of which needed stacks of fluid with it, the infusions ran for hours so he was given a bed and had an overnight stay. When I went to pick him up the next morning, he announced he felt "like a box of birds" and looked as good as I had seen him in months. The fear and stress of not knowing what was going to happen had left him, and the knowledge that we were finally doing something to fight made him feel very positive. The nurses also fed a lot of fluids into him via the drip which also would have made him feel better smile.

We found that week one of the cycle was ok (although nausea sometimes happened during this time), week 2 was feeling exhausted and weak and week 3 was a daily recovery to feeling human again. Then it started all over again... This may be different in your case though and is dependent on the drugs and doses they give you as well as how far apart the cyles are. I think I read somewhere that you think your cycles may be 4 weeks apart?

Remember too that Alex was having chemo as his very first therapy as a newly diagnosed patient. Your treatment may end up being completely different from Alex's

Anyway, keep us posted and we will support you whatever happens with whatever you need

Karen



Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
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Hello all.. I know I have 2 postings .. actually this belongs to Ida and she's taking a break from staring the screen (although we are both net freaks since we are 16 .. that's how we met smile ).. online couples!..

Our 2nd opinion gives us much much more clearer picture... on how we should go ahead with this. IT is still can be cured... with localized tumor of 1.9cm and scans are cleared for nodes.

Lets see what new surgeon will tell us. Sometimes its not good when the surgeon (the first one we had) became closed people to us. I think it made him difficult to cut us? I don;t know.. what I know is we need to act fast while it is small..

I love you guys all.. seriously not kidding...

HUGGGGGGGSS!!!!


CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Im happy to hear that the recurrence has been caught while its in the early stages. Hopefully it will be a quick surgery with not much tissue removed. Then she can recover and move on. 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
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Glad you got that second opinion! Things should get a whole lot better for Ida and you from now on!


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.)



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KP5 Offline
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Posts: 805
We definitely get bonded on here, that's for sure!! Glad for the second opinion. Will watch for the continuing story!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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Terrific on the second opinion! Act quickly. Mine was a little smaller but so far I am doing fine since treatment. Take care and good luck.


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: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
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Joined: Feb 2012
Posts: 34
Hey guys.. met the surgeon today and he will accept our case!.. Good thing was he is a double doctor kinda thing, head and neck cancer surgeon,plastic surgeon and dentist as well.. how lucky...

So we did teeth X Ray today to plan the surgery. Since she had radiation, doctor will do via neck instead the jaw bone. So we will see what will happened.

Ida is scheduled for a PET Scan tomorrow just to make sure it hasn't spread although her MRI scans showed that there's no nodes involved.

Wish us luck and I will update as we go on this bumpy ride.. !

Hugs!

AL


CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
That's great so glad to hear you found someone good. Good luck with everything.


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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