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#16844 01-08-2005 02:06 PM
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Hi Jen,
Please STOP and TAKE a breath. If you don't quit this hyperventilation, no sleep, elevated blood pressure routine you have gotten into, you won't even have to worry about stage IV cancer. You will be dead of a heart attack before your cancer doctors get to treat you. SLOW DOWN. Read this forum. The signatures of most participants contain their diagnosis and treatment and honest we are not all dead, even stage IV patients. Read the resource and treatment sections on the forum to get you informed so you can ask appropriate questions of the drs. Take someone with you to the appts and as my dr says, listen to what he has to say before bombarding him with questions. He has usually answered most of mine before I open my mouth.

I know you are suffering severe pain.I also don't like the fact this tumor is increasing in size. Can they accelerate your appts somehow.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#16845 01-08-2005 08:58 PM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Hi Jen and welcome to the forum. It wasn't that long ago that I felt just like you. I passed out when they gave me the diagnosis and told me to get my affairs in order. This phase is the worst and it will pass. I have been cancer free now for 2 years. Just became a VP for an international medical device company and life is exceeding my expectations. Cancer is NOT an automatic death sentence. Like Karen, I had chemo and IMRT radiation only and I am back to life not only normal but better than it was before. I have a new perspective that has enriched my life in countless ways. Don't freak out on the stats. Like has been already said - get thee to a comprehensive cancer center and don't short cut your treatment options. It will be a tough year or two but you CAN DO THIS! I also got meds for anxiety and those helped a great deal. Get some sleepers too - you need your strength for the fight. Develop a support network and be willing to allow people to gift you with their help. It's ok to be scared we all were. Read my survivor check in thread for some more positive reinforcement. We are here for you.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#16846 01-09-2005 07:56 AM
Joined: Jan 2005
Posts: 17
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Posts: 17
Jen, I am very new to this place as well. It was not that long ago my head was spinning out of control. The BAM BAM BAM, quickness and feeling totally out of control is tough. I actually got a phone call two days after being diagnosed saying I had a MRI at 2:15pm...it was already 2:20pm. Needless to say they wondered why I was late, but things happened like that up untill the surgery and then into treatment. It happens very fast and you do feel totally out of control. Keep positive, this just means they are doing everything possible to get you better again. I had 3 stays in the hospital over my chemo and radiation treatments. I kept letting my self get dehydrated. I am on top of that now and only have one radiation left. It is hard at the beginning but remember to ask lots of questions and bring someone with you if possible...4 ears are better than 2. Find support here or wherever you can. It is overwhelming...but it can be done. Take Care and KEEP POSITIVE!!!!

#16847 01-09-2005 01:59 PM
Joined: Jun 2004
Posts: 72
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Supporting Member (50+ posts)

Joined: Jun 2004
Posts: 72
Jen: I am so sorry you are having to deal with this. I'd like to suggest that you might want to ask your doctors for some medication to deal with anxiety attacks. The meds for anxiety/depression have improved tremendously in the last 5 years. As scientists learn more about the brain, they are finding a big relationshp between the mind & the body (surprise!) and our minds can create physical problems. You have a lot on your mind right now confused and because a cancer diagnosis is so overwhelming, you may need additional help with coping. Good meds can help you cope with the panic/anxiety that you are experiencing. Talk to your doctors and see what they recommend. Also, for physical pain, if you are in pain, say so. Doctors are not mind readers. Finally, it occured to me that your pre-diagnosis symptoms sound a lot like menapause (or perimenapause) so you might want to see your ob-gyn. Just add it to your list of doctor appts! :rolleyes:

Every day with your family is precious and is WORTH the fight. - Candace


Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
#16848 01-10-2005 03:20 AM
Joined: Dec 2002
Posts: 36
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Dec 2002
Posts: 36
Jen
Being diagnosed with cancer is not a death sentence, It can be beaten! wink I have had all the feelings you are having now, it was an emotional rollercoaster for me and I needed medication to cope at first. It was the toughest ride of my life.
Then I changed my attitude and said, (and with all my kids together) I promised them I was going to beat this. Two years later I


Stage 4b Tonsil cancer Survivor!
Dx 11/05/02 SCC 2cm tumor in left tonsil 7x4cm neck node L/side with other positive nodes on right,
Wide field Tonsillectomy Nov 20/02
Tx 1/2/03, Cisplatin Chemo x3, IMRT x 40 L/Neck Disection 08/15/03
#16849 01-11-2005 09:10 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
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Jen,

There's not a thing you are feeling and mentioning that haven't been experienced by each and every one of us through our journey. Remember, as of the day of your diagnosis...you are a SURVIVOR, until they can prove otherwise.

Just like any other grieving process, there are distinct stages you will go through over and over. With the disease comes the great loss of many things you have learned to take for granted. Also with this disease, you will soon look back on this time and realize more than ever how fortunate you have been and are in life.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#16850 01-11-2005 02:59 PM
Joined: Aug 2004
Posts: 217
Platinum Member (200+ posts)
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Joined: Aug 2004
Posts: 217
Hi, Jen.
There is nothing I can add to what everyone has told you. You already know what a great resource this site will be - and that everyone here is dedicated to helping you get through the next few months - and beyond.
My husband was diagnosed with Stage IV SCC last summer. I first posted here on Aug. 8, 4 days after his first chemo treatment. I am happy to say that 6 long, hard months later, the doctors have said none of the 55 lymph nodes removed on 12/10 show any signs of viable disease. "Normal" life seems a long way off, but we are focused on Tom's recovery and looking forward to many more years together. YOU WILL GET THROUGH THIS, TOO! Your family will help, and so will we.
Love and sincere prayers,
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
#16851 01-11-2005 03:10 PM
Joined: Jun 2004
Posts: 106
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Joined: Jun 2004
Posts: 106
Jen,

I know, it all happens so quick - one day you are a normal healthy woman, and then, all of a sudden you are one of us!! This time last year I had no idea that I would ever get cancer - nobody in my family had had cancer, it just did not happen to us.
But it happened, and I learned that I can survive it. I even had the bizarre experience of having to be glad that I had oral cancer, because in a followup PET scan they found a kidney cancer that would have grown untreatable without any symptoms. Now I am recovering from a kidney operation, too, in addition to the after effects of radiation last May and June.

And life is good, and worth a big fight!!! I remember the radiation oncologist asking me if I was a strong person, because the radiation treatment would be rough. I felt like asking him, why, do I have a choice? You don't have a choice, you have to fight with all your energy, and your husband's and family's energy, too. And you will find out that you can do it, one little thing at the time. Give yourself permission to put everything you have into getting better, dont let yourself worry about unimportant things like laundry and dust and what you look like.
On the other hand, doing what you can to keep things going smoothly and comfortably, especially for the children, will keep you feeling better.

I ramble again, never mind.

Good luck, remember that everybody on this forum is pulling for you!

Leena


scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
#16852 01-12-2005 06:09 AM
Joined: Apr 2002
Posts: 80
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Senior Member (75+ posts)
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Senior Member (75+ posts)

Joined: Apr 2002
Posts: 80
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Jen

Just wanted to add my 2 cents, you have a fight on your hands, but remember you can do it. I was stage IV had surgery, chemo, and rad.in 2001
I'm coming up on 4 years. Set your mind to the fight and try not to lose the light at the end of the tunnel. I will be praying for you, hang in there!


JOAN
#16853 01-13-2005 04:57 AM
Joined: Dec 2004
Posts: 9
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Posts: 9
Jen,
I'm thinking of you and praying for you. I am awaiting my biopsy results as I write this. I'm so frightened but no matter what I know I will fight; let's fight together!
Sending you love and strength across the miles.
MicheleT


Michele T smile
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