need support
Comments
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K4
K4,
I have not had personal experience with HIPEC as my tumors were confined to my liver. I have read through the entire and been following a blog at http://www.wunderglo.com/ of a young woman who had a pretty extensive debulking surgery followed by HIPEC. You may find some of the questions you didn't know you had answered at her blog.
With respect to a timeline.... I had a doctor tell me 4 years ago that I had 22-24 months. Turns out he was wrong. I am here now and have been in remission 3 years and 4 months. Doctors are not the last word on your "time." Don't drive yourself crazy over what he said and just make getting second opinions and other options a priority.
Best wishes,
Amy0 -
You need another opinion at a cancer center.
My cancer (Appendix in origin) had encompassed my ovary, and seeded throughout my abdomen. I had multiple tumors everywhere. My surgeon removed them all, and I had EPIC (not heated IP chemo, but multiple rounds of IP chemo.) 5 years later, I'm very healthy, living a normal life.
You need someone who can look at those tumors and remove them.0 -
Amy,Danker & Abrub,thank
Amy,Danker & Abrub,
thank you for responding as i have been feeling awful. we found out june 28 & reading most internet places made me feel like i am not going to see tomorrow. all of you made me cry with feelings of hope!!! it means so much when you guys take your time & reach out to help someone you do not know. thank you for giving me hope!
judy0 -
where did you haveabrub said:You need another opinion at a cancer center.
My cancer (Appendix in origin) had encompassed my ovary, and seeded throughout my abdomen. I had multiple tumors everywhere. My surgeon removed them all, and I had EPIC (not heated IP chemo, but multiple rounds of IP chemo.) 5 years later, I'm very healthy, living a normal life.
You need someone who can look at those tumors and remove them.
where did you have treatment? wonderful that it worked for you!0 -
where did you haveabrub said:You need another opinion at a cancer center.
My cancer (Appendix in origin) had encompassed my ovary, and seeded throughout my abdomen. I had multiple tumors everywhere. My surgeon removed them all, and I had EPIC (not heated IP chemo, but multiple rounds of IP chemo.) 5 years later, I'm very healthy, living a normal life.
You need someone who can look at those tumors and remove them.
where did you have treatment? wonderful that it worked for you!0 -
I was treated at Memorial Sloan Ketteringk44454445 said:where did you have
where did you have treatment? wonderful that it worked for you!
I was treated at Memorial Sloan Kettering in NYC. Dr. Philip Paty was my surgeon (there are others here who adore him as much as I do.)
After being given my "death sentence," Dr. Paty gave me hope. He has very long term plans for me, as does my oncologist (who left MSK 18 months ago.) I'm expected to attend his son's wedding. His son was born when I was diagnosed, so we're figuring at least another 20 years before the wedding!
Alice0 -
thank you & enjoy thatabrub said:I was treated at Memorial Sloan Kettering
I was treated at Memorial Sloan Kettering in NYC. Dr. Philip Paty was my surgeon (there are others here who adore him as much as I do.)
After being given my "death sentence," Dr. Paty gave me hope. He has very long term plans for me, as does my oncologist (who left MSK 18 months ago.) I'm expected to attend his son's wedding. His son was born when I was diagnosed, so we're figuring at least another 20 years before the wedding!
Alice
thank you & enjoy that wedding in 20+ years!!!
judy0 -
Hi Judyk44454445 said:Amy,Danker & Abrub,thank
Amy,Danker & Abrub,
thank you for responding as i have been feeling awful. we found out june 28 & reading most internet places made me feel like i am not going to see tomorrow. all of you made me cry with feelings of hope!!! it means so much when you guys take your time & reach out to help someone you do not know. thank you for giving me hope!
judy
Sorry you have to be here, but there is a lot of good advice and experiences.
Since you have an appt. at Ohio State, see what they say. If you are not satisfied, I would look into having a consult with abrub's (Alice) doctor in NYC.
The reason I am saying this, is that I also travel out-of-state for treatment. Unfortunately, I travel every other week.....definitely not easy.
But, if there is a chance you would ever end up having procedures/surgeries, etc, done at Sloan, there are a couple of places you could possibly stay for free. There is also a service "Corporate Angels" that may be able to help out with air travel. Also, I think you can get a free round air trip through the American Cancer Society, once per year.
Anyway, you may have a good consult at OSU (hope that you do), but if you did want to compare notes, I would definitely look into Alice's advice.
Take care, keep us posted.0 -
hi janie 1,janie1 said:Hi Judy
Sorry you have to be here, but there is a lot of good advice and experiences.
Since you have an appt. at Ohio State, see what they say. If you are not satisfied, I would look into having a consult with abrub's (Alice) doctor in NYC.
The reason I am saying this, is that I also travel out-of-state for treatment. Unfortunately, I travel every other week.....definitely not easy.
But, if there is a chance you would ever end up having procedures/surgeries, etc, done at Sloan, there are a couple of places you could possibly stay for free. There is also a service "Corporate Angels" that may be able to help out with air travel. Also, I think you can get a free round air trip through the American Cancer Society, once per year.
Anyway, you may have a good consult at OSU (hope that you do), but if you did want to compare notes, I would definitely look into Alice's advice.
Take care, keep us posted.
thank you for
hi janie 1,
thank you for the advise. i am getting a more positive outlook because of the support all of you have given me. this is a hard journey but it is easier knowing i have people to talk to on here. good luck & keep me posted on how you are.
judy0 -
Howdy K4
I'm very sorry that you've been diagnosed, but you've come to a great place to find help and answers. What the others have already said is so true. Getting additional professional opinions may very likely give you a much better prognosis. Also, doctors will usually give the worst case scenario, so take that time frame with a very large grain of salt. Attitude is very important in this fight so keep telling yourself that there's no way this thing is going to get the best of you. Something to keep in mind is that no two cancers are the same; ask a lot of questions of your onc and let them know of any changes, no matter no small they may seem.
Good luck in your fight and God Bless,
Doc/Ray0 -
Judy
I was given 4 to 6 months to live IF I did chemo. I did the chemo, it has been 2 1/2 years now since they told me that, and I'm currently NED (no evidence of disease). I am here very much alive, very active, going to college full time, babysitting for one of my grandchildren, working part time. Life is good. Don't believe in the timeline, we've learned that they don't mean a thing and they have some nerve taking away our "hope" especially when they are so wrong.
Winter Marie0 -
hi Doc/RayDoc_Hawk said:Howdy K4
I'm very sorry that you've been diagnosed, but you've come to a great place to find help and answers. What the others have already said is so true. Getting additional professional opinions may very likely give you a much better prognosis. Also, doctors will usually give the worst case scenario, so take that time frame with a very large grain of salt. Attitude is very important in this fight so keep telling yourself that there's no way this thing is going to get the best of you. Something to keep in mind is that no two cancers are the same; ask a lot of questions of your onc and let them know of any changes, no matter no small they may seem.
Good luck in your fight and God Bless,
Doc/Ray
thank you for the so true words & advice. especially about the doctors. what you said has given me focus on this overwhelming situation & i am ready to fight! take care & wishing you the best.
judy0 -
hi Winter Marieherdizziness said:Judy
I was given 4 to 6 months to live IF I did chemo. I did the chemo, it has been 2 1/2 years now since they told me that, and I'm currently NED (no evidence of disease). I am here very much alive, very active, going to college full time, babysitting for one of my grandchildren, working part time. Life is good. Don't believe in the timeline, we've learned that they don't mean a thing and they have some nerve taking away our "hope" especially when they are so wrong.
Winter Marie
thank you so much for telling me about you. wow-it is wonderful how you have proved them wrong about having 4 to 6 months! and to have such an active life is beyond words. one of the many things i take away from here is that a positive attitude is important. yes i agree that it is wrong of them to take away our hope which is what happened to me friday. good luck in your busy life & stay NED!
judy0 -
Second Opinion
Our thoughts and prayers are with you. I would get a second opinion and third opinion. Oncologists have different results using different treatments. I know if I had stayed with the first oncologist I consulted I would not be here today. She had the most carefree lackadaisical attitude. Then charged me the most for her consultation!
When we spoke to oncologists we asked how many patients have you seen with similar cancer, and what was the outcome. Several Oncologists told us that everyone is different, and we moved on. We found an oncologist whom told us everyone is different and we vary the treatment to meet each person's needs, and our success rate is.... We wanted a positive Doc whom could find the answer.
Our Mental health, Diet, and exercise have a lot to do with our treatment. Make sure you are the best prepared also. The treatments are a journey and a new normal for a short period of time.
You will be in our thoughts, keep everyone updated. This site helped me keep positive, and others told me what to expect. We are all afraid of the unknown(s), by encountering less unknowns kept me more positive.
Best Always, mike0 -
mikethxmiker said:Second Opinion
Our thoughts and prayers are with you. I would get a second opinion and third opinion. Oncologists have different results using different treatments. I know if I had stayed with the first oncologist I consulted I would not be here today. She had the most carefree lackadaisical attitude. Then charged me the most for her consultation!
When we spoke to oncologists we asked how many patients have you seen with similar cancer, and what was the outcome. Several Oncologists told us that everyone is different, and we moved on. We found an oncologist whom told us everyone is different and we vary the treatment to meet each person's needs, and our success rate is.... We wanted a positive Doc whom could find the answer.
Our Mental health, Diet, and exercise have a lot to do with our treatment. Make sure you are the best prepared also. The treatments are a journey and a new normal for a short period of time.
You will be in our thoughts, keep everyone updated. This site helped me keep positive, and others told me what to expect. We are all afraid of the unknown(s), by encountering less unknowns kept me more positive.
Best Always, mike
mike thank you for your response & very good advice. i agree with you about the mental health,diet & exercise & to have that re-inforced on here really does help! i appreciate everyone on this site for helping others as this is a journey where positive support is needed.
wishing you the best
judy0
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