Doctors Report Help Please

ladyjogger31

Hi Ladies. I just returned from my appt.with my Gyn/Onc. I've been so upset about my ct scan results. My Onc where I live read them and said it looks like a tumor. Well, when I went to see my Gyn/onc he said it looks to be a cyst. He did a pelvic exam and felt nothing. I was thrilled. He still wants me to do more chemo. My ca 125 is at 50.6 and I have had non stop chemo since April of last year. He said he would give me low doses of Gemzar or Topotecan.Has any one been on them and how do they work, he said 3 weeks on 1 week off. I asked him if I will ever see remission, he said No. That really upset me. He said if I need a break he would give me one. Has anyone been on chemo non-stop? Was anyone ever told they will never see remission? Will lose my hair again? Anything help would be appreciated. I know you ladies will help me out; you’re always there for me. Thank God I have you.I pray everyday for a CURE for all of us fighting this disease.

Hugs, Prayers and Love,
Terry

green50

Huh not sure what he meant
I had both and they did not make me lose hair. I get my count down below 100 and I tell dr I am ready for a break. I have had a hard time getting it down this past year but at 4000 I still took a 2 month break over holidays. Yes got to fight to get it down there but. The two chemos did not take mine down much but my CA125 was real high. And different woman respond differently. I wish you luck and hope you get a break
Prayers and Hugs
Sandy

saundra

Dear Terry
I have just finished reading a book by Holly W. Whitcomb, "Seven Spiritual Gifts of Waiting" and it has helped me so much. They are Patience, Loss of Control, Living in the Present, Compassion, Gratitude, Humility, and Trust in God. I ordered it for my Kindle from Amazon so I can't send it to you. I think it may be if help to us all. It is a workbook with questions at the end of each chapter and instructions to be used for teaching a class.

I find reading an inspirational book helpful when I get "down in the dumps". It helps me focus on God and his unending love for me.

I was on Taxol for 20 months straight...the last 11 was low dose maintenance dose. I eventually became immune to it. I do believe that it held the growths back for 10 of those months. Now the anti estrogen is holding it back but I do not know for how long. I am Stage IV and have known from reading and the gyn/onc that I will be fighting this the rest of my life one way or the other. Once I surrendered to this thought, the fighting attitude kicked in and I was able to enjoy the in between times to the fullest. I try to live for today.

Hugs and Prayers just for you today, Saundra♥

lindaprocopio

I love your "Seven Spiritual Gifts of Waiting" !
My husband and I went to a local Cancer Support Group today for a luncheon. I sat near a pastor who lost his brother to cancer last week, and who is planning on visiting the chemo center I go to regularly now to walk around and talk with people and offer them a compassionate ear. I told him that when I was pregnant and had my babies, it changed me profoundly into someone more, and that I felt this cancer journey had the same potential to again change me into something more. I think that "Seven Spiritual Gifts of Waiting" really describes what I was talking about, but couldn't really put into words. So thanks for that list, that kind of clarifies for me the changes I see in myself (besides the bald head, lashless eyes, and 15 pound weight gain! HA!)

((((Terry)))) I have been in some sort of treatment since September (chemo curently and since November) and know it will be at least June, probably July, before I will be offered a break, as I have 8 weeks of radiation once I finish up my chemo. It can seem endless, and my heart goes out to you to have words spoken like 'never see remission'. My initial reaction to that is anger, as I don't see how he can possibly know that. Only God knows that! A CA-125 of 50.6 is so close to <35 and the normal range; it seems like a good CT-scan like you had and a CA-125 like you have is so CLOSE to remission!! Right?

ladyjogger31

lindaprocopio said:

I love your "Seven Spiritual Gifts of Waiting" !
My husband and I went to a local Cancer Support Group today for a luncheon. I sat near a pastor who lost his brother to cancer last week, and who is planning on visiting the chemo center I go to regularly now to walk around and talk with people and offer them a compassionate ear. I told him that when I was pregnant and had my babies, it changed me profoundly into someone more, and that I felt this cancer journey had the same potential to again change me into something more. I think that "Seven Spiritual Gifts of Waiting" really describes what I was talking about, but couldn't really put into words. So thanks for that list, that kind of clarifies for me the changes I see in myself (besides the bald head, lashless eyes, and 15 pound weight gain! HA!)

((((Terry)))) I have been in some sort of treatment since September (chemo curently and since November) and know it will be at least June, probably July, before I will be offered a break, as I have 8 weeks of radiation once I finish up my chemo. It can seem endless, and my heart goes out to you to have words spoken like 'never see remission'. My initial reaction to that is anger, as I don't see how he can possibly know that. Only God knows that! A CA-125 of 50.6 is so close to <35 and the normal range; it seems like a good CT-scan like you had and a CA-125 like you have is so CLOSE to remission!! Right?</p>

Linda
Hi Linda, I got really upset when he told me that. I'm thinking of going for a second opinion. I know I will have to go out of state but its my life.My Gyn/Onc really blew my husband and I off today. That really got me angry.Hope your chemo goes easy for you.
Hugs and Prayers, Terry

newhopechurchli

lindaprocopio said:

I love your "Seven Spiritual Gifts of Waiting" !
My husband and I went to a local Cancer Support Group today for a luncheon. I sat near a pastor who lost his brother to cancer last week, and who is planning on visiting the chemo center I go to regularly now to walk around and talk with people and offer them a compassionate ear. I told him that when I was pregnant and had my babies, it changed me profoundly into someone more, and that I felt this cancer journey had the same potential to again change me into something more. I think that "Seven Spiritual Gifts of Waiting" really describes what I was talking about, but couldn't really put into words. So thanks for that list, that kind of clarifies for me the changes I see in myself (besides the bald head, lashless eyes, and 15 pound weight gain! HA!)

((((Terry)))) I have been in some sort of treatment since September (chemo curently and since November) and know it will be at least June, probably July, before I will be offered a break, as I have 8 weeks of radiation once I finish up my chemo. It can seem endless, and my heart goes out to you to have words spoken like 'never see remission'. My initial reaction to that is anger, as I don't see how he can possibly know that. Only God knows that! A CA-125 of 50.6 is so close to <35 and the normal range; it seems like a good CT-scan like you had and a CA-125 like you have is so CLOSE to remission!! Right?</p>

I read on this site...
somewhere that there are many people who "DO" go into remission even after a second bout of recurrance and chemo. I definatley don't think the Doctor should have been that heartless - He certainly doesn't know everything.... and I think he should understand that and watch what he says! Only God knows the beginning and the end - so just continue to put your trust in Him. I pray God gives you peace and rest.
God Bless You, Tricia

newhopechurchli

lindaprocopio said:

I love your "Seven Spiritual Gifts of Waiting" !
My husband and I went to a local Cancer Support Group today for a luncheon. I sat near a pastor who lost his brother to cancer last week, and who is planning on visiting the chemo center I go to regularly now to walk around and talk with people and offer them a compassionate ear. I told him that when I was pregnant and had my babies, it changed me profoundly into someone more, and that I felt this cancer journey had the same potential to again change me into something more. I think that "Seven Spiritual Gifts of Waiting" really describes what I was talking about, but couldn't really put into words. So thanks for that list, that kind of clarifies for me the changes I see in myself (besides the bald head, lashless eyes, and 15 pound weight gain! HA!)

((((Terry)))) I have been in some sort of treatment since September (chemo curently and since November) and know it will be at least June, probably July, before I will be offered a break, as I have 8 weeks of radiation once I finish up my chemo. It can seem endless, and my heart goes out to you to have words spoken like 'never see remission'. My initial reaction to that is anger, as I don't see how he can possibly know that. Only God knows that! A CA-125 of 50.6 is so close to <35 and the normal range; it seems like a good CT-scan like you had and a CA-125 like you have is so CLOSE to remission!! Right?</p>

I read on this site...
somewhere that there are many people who "DO" go into remission even after a second bout of recurrance and chemo. I definatley don't think the Doctor should have been that heartless - He certainly doesn't know everything.... and I think he should understand that and watch what he says! Only God knows the beginning and the end - so just continue to put your trust in Him. I pray God gives you peace and rest.
God Bless You, Tricia

lindaprocopio

You have every right to be angry, Terry.
When my CA-125 was in the same range as yours, my chemo oncologist would say things like "Your next chemo will probably drop you down into the normal range", encouraging me with hope. That's why your oncologist's statement made me mad. There's such a difference in how oncologists look at test results, and how they feel about preparing their patients for the worst vs. keeping their justifiable hope alive. As SOON as my CA-125 dropped down below 35, and my CT-scan was showing no evidence of disease, my chemo oncologist began to say "even though you are in remission,..."; happy to allow me to think of myself as 'in remission', even as he followed that with "we are going to keep up your treatment to make sure we got every single cancer cell."

When I pressed him about the aggressiveness of my cancer type, which all of my research shows is every bit as recurrent as overian cancer, and with a similar prognosis, he admitted that "Your cancer doesn't have a good prognosis", but followed that immediately with "But YOU, personally, have a very good prognosis." He refuses to talk about recurrance, always reminding me that we are shooting for a CURE for me. I don't know how realistic that is, as I do a lot of research; I know what the life expectancy is for Stage III-C UPSC. But my oncologist believes in HOPE; and he doesn't ever say anything that would dampen my fighting spirit. I'd sooner have that in a doctor than one that would ever say to me "Never a remission." That's too demoralizing. And if you use my oncologist's criteria to be considered 'in remission', you are almost THERE!

Lauracec

lindaprocopio said:

You have every right to be angry, Terry.
When my CA-125 was in the same range as yours, my chemo oncologist would say things like "Your next chemo will probably drop you down into the normal range", encouraging me with hope. That's why your oncologist's statement made me mad. There's such a difference in how oncologists look at test results, and how they feel about preparing their patients for the worst vs. keeping their justifiable hope alive. As SOON as my CA-125 dropped down below 35, and my CT-scan was showing no evidence of disease, my chemo oncologist began to say "even though you are in remission,..."; happy to allow me to think of myself as 'in remission', even as he followed that with "we are going to keep up your treatment to make sure we got every single cancer cell."

When I pressed him about the aggressiveness of my cancer type, which all of my research shows is every bit as recurrent as overian cancer, and with a similar prognosis, he admitted that "Your cancer doesn't have a good prognosis", but followed that immediately with "But YOU, personally, have a very good prognosis." He refuses to talk about recurrance, always reminding me that we are shooting for a CURE for me. I don't know how realistic that is, as I do a lot of research; I know what the life expectancy is for Stage III-C UPSC. But my oncologist believes in HOPE; and he doesn't ever say anything that would dampen my fighting spirit. I'd sooner have that in a doctor than one that would ever say to me "Never a remission." That's too demoralizing. And if you use my oncologist's criteria to be considered 'in remission', you are almost THERE!

wow
I really like your onc. and terry I bet linda is right you are almost there. Hugs and prayers Laura

BonnieR

Hugs ♥ Hope ♥ Prayers
Dearest Terry,

I have been on both of these drugs, my hair thinned. In fact I am currently doing gemzar with nexavar.

That is a pretty low ca125 for him to say never, however, if I would have asked my dr he would have say ~ probably not ~ if I would have asked for his opinion. But I know he isn't God and can only go by his statistics.

I have taken chemo breaks when I felt like I could use a few months off chemo. This was sometimes by my choice and sometimes by my doctors. So whatever you decide is your choice.

The good news is that is appears your ca125 is rising from microscopic cancer cells and that is good, and we know chemo can attack cancer under .5cm and that is good news.

So I say PTL for good news, as well as ask for God's guidance in what you do next.

Hugs N Prayers Bonnie

saundra

lindaprocopio said:

You have every right to be angry, Terry.
When my CA-125 was in the same range as yours, my chemo oncologist would say things like "Your next chemo will probably drop you down into the normal range", encouraging me with hope. That's why your oncologist's statement made me mad. There's such a difference in how oncologists look at test results, and how they feel about preparing their patients for the worst vs. keeping their justifiable hope alive. As SOON as my CA-125 dropped down below 35, and my CT-scan was showing no evidence of disease, my chemo oncologist began to say "even though you are in remission,..."; happy to allow me to think of myself as 'in remission', even as he followed that with "we are going to keep up your treatment to make sure we got every single cancer cell."

When I pressed him about the aggressiveness of my cancer type, which all of my research shows is every bit as recurrent as overian cancer, and with a similar prognosis, he admitted that "Your cancer doesn't have a good prognosis", but followed that immediately with "But YOU, personally, have a very good prognosis." He refuses to talk about recurrance, always reminding me that we are shooting for a CURE for me. I don't know how realistic that is, as I do a lot of research; I know what the life expectancy is for Stage III-C UPSC. But my oncologist believes in HOPE; and he doesn't ever say anything that would dampen my fighting spirit. I'd sooner have that in a doctor than one that would ever say to me "Never a remission." That's too demoralizing. And if you use my oncologist's criteria to be considered 'in remission', you are almost THERE!

mine too
Linda, that is the attitude of my doctors also. I, too, have read the statistics but my doctors always remark at how well I am getting good results every step of the way. After all, some of the ladies never recover from surgery so that alone is a blessing. Our job it seems is to just keep fighting and not worry about the what Ifs in life. That is what that book I have just finished taught me by asking the questions of what I could do while I wait. Saundra

ladyjogger31

saundra said:

Dear Terry
I have just finished reading a book by Holly W. Whitcomb, "Seven Spiritual Gifts of Waiting" and it has helped me so much. They are Patience, Loss of Control, Living in the Present, Compassion, Gratitude, Humility, and Trust in God. I ordered it for my Kindle from Amazon so I can't send it to you. I think it may be if help to us all. It is a workbook with questions at the end of each chapter and instructions to be used for teaching a class.

I find reading an inspirational book helpful when I get "down in the dumps". It helps me focus on God and his unending love for me.

I was on Taxol for 20 months straight...the last 11 was low dose maintenance dose. I eventually became immune to it. I do believe that it held the growths back for 10 of those months. Now the anti estrogen is holding it back but I do not know for how long. I am Stage IV and have known from reading and the gyn/onc that I will be fighting this the rest of my life one way or the other. Once I surrendered to this thought, the fighting attitude kicked in and I was able to enjoy the in between times to the fullest. I try to live for today.

Hugs and Prayers just for you today, Saundra♥

Saundra
Hi Saundra, Thanks, I will order the book it sound like something I would like. I have several books by Joyce Meyer. I'm just so upset to think my Gyn/Onc said that I will never see remission.
Hugs and Prayers, Terry

green50

BonnieR said:

Hugs ♥ Hope ♥ Prayers
Dearest Terry,

I have been on both of these drugs, my hair thinned. In fact I am currently doing gemzar with nexavar.

That is a pretty low ca125 for him to say never, however, if I would have asked my dr he would have say ~ probably not ~ if I would have asked for his opinion. But I know he isn't God and can only go by his statistics.

I have taken chemo breaks when I felt like I could use a few months off chemo. This was sometimes by my choice and sometimes by my doctors. So whatever you decide is your choice.

The good news is that is appears your ca125 is rising from microscopic cancer cells and that is good, and we know chemo can attack cancer under .5cm and that is good news.

So I say PTL for good news, as well as ask for God's guidance in what you do next.

Hugs N Prayers Bonnie

Protein Is CA125
I learned that CA is the amount of protein you build up from tumors and as I said before the count itself is not as important as the fact it goes down or stabilizes. My count is 18000 and maybe lower since just going round 2 with my chemo. I just look the fact CT says tumors one grew a little and I have some in lymphnodes in neck now but some have shrunk and my CA is going to be high because I am one of those with high protein count(CA). And as Bonnie said we decide to take breaks or perhaps the dr if the blood test on cells need a break. If mine get below 100 I will be dancing on air. Has dropped before 3000 at a time so its possible.
Prayers and Hugs
Sandy