I am recently diagnosed
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Suzanne,
My thoughts and prayers are with you. Is it possible to do a split regimen of radiation and chemo- to get the benefits of both? You asked how you are to get through this… take all the love that is offered you and know that we all wish only but the best for you. One precious moment at a time…
Brightest Blessings,
Missing USuzanne,
Your doctor’s recommendations sound like a good plan. You may be one of the lucky ones that have an immediate, positive response to the tumors. Just expect to be tired all the time as a result of the treatment. You’re moving into a place where you have to redefine “normal”.“Normal” is not what you used to be able to do before you were sick. “Normal” is now dealing with cancer, and still living your life to it’s fullest, realizing that you have challenges you never thought or dreamed you’d have before.
We saw the oncologist yesterday at Emory, Dr. Kauh. His recommendation is chemo, gemzar and cisplatin, 2 weeks on (once a week), 1 week off. Looking for tumor shrinkage. Because I have so many tumors on my left lobe and at least one on the right, he did not think radiation is the best option to start with. I really want the tumors to shrink before my bile ducts collapse. So far I have no jaundice issues. Dr. Kauh advises that I need to start some type of treatment in the next 2-3 weeks latest, as his observation is that there seems to be a growth cycle every couple of months.
I know this is my decision, and I need to start somewhere but does anyone have any thoughts?
SuzanneThanks Jeff!! We have only been doing this for 2 years,(if you don’t count the year he had the tumor and it was seen on CT but we were not told!) I don’t know how you have managed for 9 years. Great job!! You are very helpful and encouraging. God bless you.
AnneWabals, It appears you have had a bumpy but so far successful journey. God has certainly been with you. God is always with us.
Bless You Guys!
Jeff G.Suzanne,
My husband was on gemzar for 10 mos.-3weeks on( once a week), and 1 week off. He had the prolonged infusion method, over 90 minutes, which makes it more effective. It shrank his tumor from 8cm. to very small, less than 2cm. It really is a miracle. Then he had surgery at Johns Hopkins, where all signs of tumor were removed. He will have 2 more rounds of gemzar when he is recovered from surgery. It has not been an easy road, but God has been with us through it all. Best to you.To Sheryl, Jeff, Joyce and everyone,
Thank you for the encouraging words. My husband and I are trying to maintain hope, but it is hard. There has to be a way out of this.
SuzanneSuzanne….Keep your chin up and don’t take no for an answer. There is just to many treatments and doctors out there. Hopefully Dr. Kauh has just what you need. Lean on us all. We are here to support you suzanne , all the way!
God’s Love and Strenght,
Jeff G.My husband was in your situation last year. Then he had chemo, and in July the tumor was completely removed. There is hope for you. God bless.
Although I am a caregiver, and not the patient, I have often thought the same thing since Butch was diagnosed in March – “how are we going to get through this”. After much praying about it , I undersand that the Lord is with us on this journey, and he will help us to bear the burden. Between God, the support of family and friends, and the people on this board, we are able to go on to the next day, and the next, etc. It has given me a new found respect for life – I look at things differently, and my perspective of what is important and what is not has very much changed. One of the biggest problems that we all face is that life is going on – situations are arising that have to be addressed, there are financial considerations that we fight, and there is a lot of sadness – everyday we are all battling life, but – for me at least – I draw upon that inner strength, and lean on God, and he always carrie us through.
God bless you,
Joyce
I have wondered the same thing. But it has been over 1 year for me and despite many days of thinking I would not get through it, I have. I don’t know what surprises wait for me tomorrow but I hope they are good ones! I have days that aren’t so good mentally or physically. I think we should be allowed to have those days. What we have stinks. I try not to let those days stretch on for too many in a row but with mixed success. I try hard to remember that I have today. When I was first given my diagnosis, they told me is was very possible I would not see last Christmas. I hope Dr. Kauh has something positive for you.
Right now I’m scheduled to see Dr. Kauh at the Winship Cancer Institute at Emory in Atlanta. We have heard he is the expert in the Southeast for this thing. Hopefully he will have something for me.
How will I ever get through this?Suzanne, I hope for the very best for you. My father was not a candidate for surgery either. He was diagnosed in 11/07 and he’s strill trying different protocols. There are a lot of things to try out there. Most important is to find the right oncologist for you. And remember you can get more than one opinion.
Keep coming back and you will learn a lot.
Susanne….sorry to hear about the aborted surgery. As our surgeon had commented…..we really don’t know the extend of the disease until we can physically observe it in the operating room. Hoping for you to recover soon and please, stay in touch as you are contemplating your next step. So glad for you to have found us.
Marion
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