Need Prayer

On Aug 05, 2012 3:00 AM BlessedDaughter wrote:

On Aug 04, 2012 7:06 PM grace9 wrote:

Thank you for your prayers! My PT scan has finally been approved and scheduled this coming Tuesday. I'm scared now too because, although the CT scan didn't show anything my markers have climbed again to 3800 and WBC down to 1.8. Dr. told us to just leave it alone and see what happens because I won't be able to beat it anyway!!! Kid you not! I'm 47 years old and have children still at home. I refuse to give up but he's definitely given up on me. He actually raised his voice to us because we are wasting money and resources. Because I want to live!! He has literally offered nothing extra. When I asked that we look at some of the new clinical trials from Johns Hopkins he said Johns Hopkins doesn't do that kind of research. I had him look the 2 trials I'm interested in up and he did do that along with saying he didn't have time to call them and then he said even if he did get it arranged I didn't have the financial means to get involved anyway. Made me feel all hope was lost. Then I see how many people are praying for me and I know I still have hope. Cal

Cal,

I am so sorry to hear this. I am praying for you. I just have a few questions, if your CT scan is showing nothing as of now, why is your oncologist so convinced the cancer is back? I've read many places where even though tumor markers are certainly valuable; the scans always trump the markers...meaning if the scan is showing nothing then your doctor has no reason to believe it is back for sure and that you are not going to beat this. There are several factors that can effect those markers. I feel that you should find a new oncologist...someone who knows more than this person. John Hopkins is one of the leading hospitals dealing with PC so he clearly knows nothing. Be your own advocate!!!

My mom is also battling PC. We pray all the time and our faith is strong. We have had many blessings on this journey so far; we continue to pray for more. Please keep her in your prayers. Know  you and your family are in mine. I hope you find a better oncologist who believes in you and your will to live. Stay strong and hopeful and know God does hear His children when we pray!!!

I don't know why he thinks I have cancer back except that he seems to think all people with PC die a few months after diagnosis. I am looking for a new oncologist as I believe you are right - the current one knows nothing. I am going to a faith healing next week and I am very excited. It sounds like such a beautiful experience from everyone I've talked to.

Thank you so much for your prayers. I have come to see how essential prayer is to life. I will absolutely pray for your mom and your family.

Sending prayers your way. God Bless.

I also agree that you NEED a new oncogist! Keep up the good fight & stay positive.

Hi Cal,

We've had good scans   but our doctor also said the cancer was never gone because of "bad numbers" . We are planning a Pet scan because that's the test that really answers all our questions and we're finding a new oncologist too. Ours never really had a handle on things and actually told us that once inoperable always inoperable and that's just wrong! We're looking for someone more experienced with pancreatic cancer rather than blood/ oncology . I looked up CEA test and RA(Rheumotoid arthritis) will increase those numbers. Swollen spleens also can lead to low blood numbers. Hopkins is your best place to explore and they answer almost immediately! They also have many research things going on now, not just two and they can offer advice on how to proceed. We consult with them often, mostly by e-mail and our doctor is probably annoyed by it but it's not his or her life in the balance!!  Pancreatic cancer has a bad reputation and some doctors have not caught on to the fact that things are indeed improving and that Gemzar is  not the only way to go. Our doctor thought that in the begining and we researched on our own  after radiation/5FU failed. We did find a clinical trial that served us well.   Pancan offers fininacial help and I think Hopkins does too. Call or e-mail Hopkins because they can help if you need advice after the Pet Scan and shame that doctor into becoming human again. Our chemo failed three years ago and we're still here and surviving!!!

Please read the Lotus Sutra interpreted by Nichiren Daishonin, best English translation by Burton Watson, it show a better path to take.  You can find iton the internet.

On Aug 05, 2012 5:10 PM shelby1 wrote:

Hi Cal,

We've had good scans   but our doctor also said the cancer was never gone because of "bad numbers" . We are planning a Pet scan because that's the test that really answers all our questions and we're finding a new oncologist too. Ours never really had a handle on things and actually told us that once inoperable always inoperable and that's just wrong! We're looking for someone more experienced with pancreatic cancer rather than blood/ oncology . I looked up CEA test and RA(Rheumotoid arthritis) will increase those numbers. Swollen spleens also can lead to low blood numbers. Hopkins is your best place to explore and they answer almost immediately! They also have many research things going on now, not just two and they can offer advice on how to proceed. We consult with them often, mostly by e-mail and our doctor is probably annoyed by it but it's not his or her life in the balance!!  Pancreatic cancer has a bad reputation and some doctors have not caught on to the fact that things are indeed improving and that Gemzar is  not the only way to go. Our doctor thought that in the begining and we researched on our own  after radiation/5FU failed. We did find a clinical trial that served us well.   Pancan offers fininacial help and I think Hopkins does too. Call or e-mail Hopkins because they can help if you need advice after the Pet Scan and shame that doctor into becoming human again. Our chemo failed three years ago and we're still here and surviving!!!

Wow, in one short message you have given me more hope than my oncologist ever has! I will be interested to see how both the PT scans turn out - please keep in touch. Thank you, my prayers are with you and you husband. Cal

On Aug 05, 2012 3:00 AM BlessedDaughter wrote:

On Aug 04, 2012 7:06 PM grace9 wrote:

Thank you for your prayers! My PT scan has finally been approved and scheduled this coming Tuesday. I'm scared now too because, although the CT scan didn't show anything my markers have climbed again to 3800 and WBC down to 1.8. Dr. told us to just leave it alone and see what happens because I won't be able to beat it anyway!!! Kid you not! I'm 47 years old and have children still at home. I refuse to give up but he's definitely given up on me. He actually raised his voice to us because we are wasting money and resources. Because I want to live!! He has literally offered nothing extra. When I asked that we look at some of the new clinical trials from Johns Hopkins he said Johns Hopkins doesn't do that kind of research. I had him look the 2 trials I'm interested in up and he did do that along with saying he didn't have time to call them and then he said even if he did get it arranged I didn't have the financial means to get involved anyway. Made me feel all hope was lost. Then I see how many people are praying for me and I know I still have hope. Cal

Cal,

I am so sorry to hear this. I am praying for you. I just have a few questions, if your CT scan is showing nothing as of now, why is your oncologist so convinced the cancer is back? I've read many places where even though tumor markers are certainly valuable; the scans always trump the markers...meaning if the scan is showing nothing then your doctor has no reason to believe it is back for sure and that you are not going to beat this. There are several factors that can effect those markers. I feel that you should find a new oncologist...someone who knows more than this person. John Hopkins is one of the leading hospitals dealing with PC so he clearly knows nothing. Be your own advocate!!!

My mom is also battling PC. We pray all the time and our faith is strong. We have had many blessings on this journey so far; we continue to pray for more. Please keep her in your prayers. Know  you and your family are in mine. I hope you find a better oncologist who believes in you and your will to live. Stay strong and hopeful and know God does hear His children when we pray!!!

Cal, how are you doing?  It depends on who reads the CT scans.  Our local doctors see the scar tissue and thinks the cancer has returned.

thinking of you and praying for you. keep strong

L

Gretchen72404

We're in the same boat here so we changed our Oncologist because he never worked with our "outside" doctors well. He told us  the cancer never left and that he  was "surprised" by the  previous Pet scan results . Actually said "once inoperable always inoperable"  Locally, you're right, the scan reports depend on whose reading them and how they research the past. We actually have a couple of Radiologist who say "could be result of previous  ablation  procedure" and NOT still cancer. We send hard copies to Dr. Watkins as we felt we have to take a stand one way or another.  We went with the Nanoknife so we go with what the "expert" says.Too much confusion between doctors. Sometimes I recommend to others to change their doctors but it is a very difficult thing to do. In the end I think it came down to confidence and this, for us anyway, is not a hand grenade or horseshoe game where close counts. We also consult or basically keep in touch with Hopkins researchers to balance everything out!  Together, may we ALL help others in our situation to understand, cope, learn and survive!  .

Pat     

I went through this with my mom's doctor to.  They told me that their was nothing else that they could do for her and that I should take her home and call hospice.  Instead I made an appointment with Moffitt Cancer Center on my own.  They have work hard to sve my mother's life and have not given up on her.  She has stage IV pancreatic cancer and has had ever complication you can imagine but they keep trying.  We are meeting with her team of doctors on Wednesday August 15 tp see if their is anything else that they can do for her.  She is not a candiate for chemo or radiation at this time they are looking into doing additional surgery. She had the whipple procedure January 19 of 2012.  The thing in that they are not giving up.  If you have find a center in your area that deals only in cancer, they are so much better in dealing with patients who are consider terminal. My prayers and thoughts are with you and your family.  This is a horrible illiness.

Did you try appealing their decision?  I've done this several times and won but you have to be persistant which is hard to do when you don't feel well. I'll be praying for you, Cal.