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#23515 06-19-2007 10:22 AM
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zoe Offline OP
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and its on the back on the soft palate his uvula has gone but they think its early.

#23516 06-19-2007 10:33 AM
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Zoe,

Find out what type of chemo and what tpye of radiation form his docs.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#23517 06-19-2007 11:04 AM
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zoe Offline OP
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oh ok will they let me see them?

#23518 06-19-2007 12:23 PM
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Zoe,
sure they will let you know, just ask. Do not ever be afraid to ask!! You do not want to assume things. The worst thing for most people is not knowing what is going on and why you will suffer from certain procedures. It helps a lot to know what is happening and that the reactions you will have to the treatments are normal and expected etc. Taking an active role helps you in battling this monster.

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
#23519 06-19-2007 03:17 PM
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HI, Zoe, The thing that helped me the most during my husband's treatment was to understand what the tx. was going to be :ie-rad and chemo [what kind of chemo drugs is important] and read everything I could find on this site about those things. Even tho some of the information was frightening, it kept me from being caught totally unaware of what side effects to prepare for. This site helped to get me organized for my role as his caregiver and gave me lots of help in dealing with John's Doctors, nurses,etc. ONe caution- don't get too far ahead of yourself. Start with the potential effects of radiation and his kind of chemo and learn all you can. Get your time organized so that you can be with him whenever he needs you and get a support system in place to help you both cope with the ongoing "homefront" responsibilities. Start a really good record keeping notebook for all meds, Doc. appts, a chart for everything [calorie wise]he eats and drinks. Keep up with his weight on a weekly basis. The more you keep a good record of, the better you can communicate with his medical team. You will have alot to do, so stay strong and try to take care of yourself too. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#23520 06-19-2007 05:49 PM
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Hello Zoe,
My husband and I were also hit with the "C" word in late February. Kyle had a lump on his tongue and ended up having surgery, lymph nodes removed and then chemo/radiation. I'm happy to say he's done with chemo and tomorrow is his last radiation treatment. It's been a crazy 4 months. You will get through it. The time has gone fast for me but I'm assuming not so fast for my husband. I flat out asked my husband what I could do to help him and his big request was to keep the kids away so he could have more quiet time. He's been very tired these past few weeks. So, I take my baby and toddler out for a few hours each day to give him more quiet time. He did not have a Peg Tube and has lost a lot of weight. EAting is very difficult for him. He's hardly eating or drinking much now. He was pretty much himself the first few weeks. Then his tongue got very sore, he's had two infections (yeast infections) in his mouth, his skin is red/raw in a few places, his hair on his face/lower part of the back of his head is gone and he is very, very tired. He's been sleeping most of his time away. No one mentions it but you do miss your spouse during all this. In my case he's just become a shadow that walks from the bedroom to the kitchen to try and eat/drink. I miss our talks, laughing, etc.. I know things will get better soon! Ask the Dr's anything you want and even ask for copies of reports and lab results. These belong to you and your husband and you have every right to keep them for your records. They are providing you a service that you are paying for. Did you ask what the Dr's hope to get out of his rad/chemo. Is it to shrink the tumor before they remove it? My husband was young so they went aggressive by removing and doing chemo/radiation. They wanted to really try and kill any lingering cancer cells. I pray they did and this is the last of the suffering Kyle has to go through. Good luck to you! Tamara

#23521 06-19-2007 09:25 PM
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Zoe
i think both you and i know that in England we do not have as much access to our records and treatment plan as our cousins in the states.the reason seems to be that we DONT pay for our treatment directly unless we choose to be treated privately.Rad and Chemo plans and doses are decided by the treatment team, and we are just told what is going to happen.That doesnt mean you cant ask ,just that you wont have the information volunteered.
With the new freedom of information act you do of course have the right to see your medical records but i dont think too many people have availed them selves of this new law yet.

I was very lucky to have a complete copy of all Robs records sent to us by the General Dental Council who are taking his dentist before a disciplinary board in September.I found it very reassuring to read all the lab and scan results and confirm that his medical team had been 100% honest with us and not kept any information back re his diagnosis and prognosis.Unfortunately this is not always the case in the UK and your records could just as easily contain things you hadnt understood or just didnt know so i guess it all depends on what information you want and what you might prefer not to know.


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.
#23522 06-20-2007 12:21 AM
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Zoe,
My doc gave me leaflets about my chemo drugs, as well as explanations of side-effects and was completely upfront about my chances. I then was handed straight to a MacMillan nurse, who went through it all again and gave me a 'diary' where everything will be logged every week--scales for me to rate side effects, weight, cell counts etc will all be logged. As Helen suggested, Cancerbackup has loads of info and telephone support. I've been told I can ask, ask and keep on asking and even have 'out of hours' numbers to ring if I need them.
As Liz says, I think we feel more 'helpless' here as we don't pay directly for our services, so think we have no right to 'demand' answers--but the best docs seem to know what we want anyway--I feel lucky with the way things have been handled here--apart from the months long wait for initial consultation and \MRI scan!
Keep coming back and asking, as well as getting in touch with the Support Services which are available here in the UK,
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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