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#67877 01-19-2008 07:18 AM
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herson Offline OP
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Hello All,

I'm looking for the best cancer centers in the world, any ideas or suggestions? I'm looking in the US and UK and even in Asia. I'm looking for a center that has drugs outside of chemo and cisplatin ..

Thank you,

H


the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
herson #67878 01-19-2008 08:37 AM
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Dear H - As a start, you could check them out here:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm


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.)



Anne-Marie #67906 01-19-2008 02:57 PM
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All I can say is good luck and be mighty careful.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
herson #67926 01-19-2008 08:20 PM
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Hi Herson,
I'm going to stick my neck out here and hope you won't think I'm being to nosey. Does your mom want you to go to this extent? You don't need to answer the question, and I'm sorry if it offends you.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
minniea #67933 01-20-2008 04:13 AM
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herson Offline OP
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Minnie,

Its no problem, thats why im here, to take and give information, feedback, personal input etc,

I haven't told my mom about the 6 months, but I what I was planning on doing was to send out mom's information to a couple of hospitals outside of Canada .. and see what they have to say.

If they think something can be done or improve her standard of living than its something I will tell her, but if it comes back the same then .. yeah

I just want a second opinion and since the Hospital we currently are going to is the leading cancer hospital in Canada, I'm thinking that its probably good to go somewhere in the US. I was thinking New York, something thats not to far, .. but i dont know

let me know your thoughts .. obviously .. you can tell i dont have a clue what im doing lol

H


the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
herson #67936 01-20-2008 04:23 AM
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Herson:

I dont know if this helps. I was treated at Lehigh Valley Hospital's Cancer Center in Allentown, Pennsylvania. This hospital is number 48 out of all the cancer treatment centers in the United States. I was given cisplatin and chemo, for me it worked, my first PET scan showed the cancer was gone. I dont know what alternative treatments the hospital offers. All I can say is it worked for me, everyone is different and has varying degrees of this awful disease. As a parent, I see what a great son you are to your mom trying to get her help. Is there any other doctors in your area that could give you a second opinion and maybe other options?



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
ChristineB #67942 01-20-2008 05:40 AM
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You are very young to be assuming the burden you have undertaken. Even when we are older it is overwhelming to face a parent's illness and feel helpless. Is there anyone else in the family or a friend who you can talk to? As difficult as it may be, you must realize that your mother is entitled to a say. Ask her if you have her permission to consult with other facilities.
Please remember that doctors were given permission to heal, not to predict. Don't be so afraid of the "6 months." Read some of the stories here and you will see that doctors are neither mathematicians nor prophets.
You are at a very fine facility. Speak with the doctors involved in your mother's treatment and ask them if they have any suggestions beyond the care she is now receiving. It is never an insult to a doctor to request a consult. The doctors at such a facility have a better knowledge of who may offer the best input on your mother's care than can any lay person. Also if you do decide on a consult, exact information on your mother's history including all treatments, tests,etc. can be transfered properly, easily and precisely between the facilities. There should be some omsbudsman, case worker or some such who can help you with this.
May the One whose commandment to honor your mother you are so lovingly fulfilling give you the strenght to go forward with whatever you decide.



SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka #67989 01-20-2008 05:03 PM
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herson Offline OP
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Malka,

Your right, at any age its very overwhelming .. its something being the oldest of 3, i feel i need to do... of course i respect her wishes, but thought theres no harm in getting a second opinion. I just feel the doctors are giving up by telling me the drugs are not working .. giving up is not something ive been taught..

As for talking to others about this, ive stopped, everyone has an opinion, i just personally dont feel like talking about it ..

i dont know if its the 6 months that bothers me .. or the fact they can actually sit there and say 6 months, i personally know one person who was given 1 year for lung cancer and lived almost 3 years .. but I do plan on consulting all the doctors at the current hospital before deciding what to do

thanks!


the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
herson #67991 01-20-2008 05:16 PM
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I find your statement "i haven't told Mum about the six months yet" quite astounding really.Your Mum is a relatively young woman,and i presume in control of all her facultys,so why are you being given information about her that she is unaware of?

As a woman of a similar age i am not sure i would appreciate either of my children making decisions on my behalf,without even consulting me,let alone discussing the plans they had with other people.
My personal opinion is that the only person you should be speaking to is your Mother,who may appreciate a little honesty,and i am sure will have her own wishes about her future.

The thought of losing a parent at such a young age is devastating i know,i lost my own Father at the age of 51,but you can't let your feelings over rule her rights to make her own choices,and whatever they are you must respect them,even if they are not what you would wish.

I hope you dont think i am being harsh,i just feel like someone needs to point out your mums possible point of view,and also to say you could be treading on dangerous ground if she finds out from another source.

good luck liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #67996 01-20-2008 05:28 PM
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Liz,
I agree with you on this one. 100%... 50 is young... believe you me!


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
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