huge CA125 rise!!
I started Avastin/Cytoxan on Friday. A new ca125 was drawn too. Still hoping SOMETHING will work. Geez.
Comments
-
avastin
i'm not sure but doesn't avastin make your ca numbers out of wack? i hope that is the case for you. hang in there !
Colleen0 -
I was readind the otherCafewoman53 said:avastin
i'm not sure but doesn't avastin make your ca numbers out of wack? i hope that is the case for you. hang in there !
Colleen
I was readind the other posts maybe it has to do with the ca125 problems they were having with the labs . Try not to panic yet, I know easier said than done.
Colleen0 -
Hmmmm
Dearest Nancy,
No way. There has to be some mistake. I heard there were some major issues with the CA-125 tests last week. Perhaps that's involved. You also said once that the CA-125 was not a good test for you...perhaps that's involved as well. I would trust the CT scans. They are what indicates whats happening. If you show no progression, than there isn't progression. I think that's the most important. What does Dr. S say?0 -
thanksCafewoman53 said:avastin
i'm not sure but doesn't avastin make your ca numbers out of wack? i hope that is the case for you. hang in there !
Colleen
This was taken at the completion of a clinical trial BEFORE Avastin.0 -
testingLisa13Q said:Hmmmm
Dearest Nancy,
No way. There has to be some mistake. I heard there were some major issues with the CA-125 tests last week. Perhaps that's involved. You also said once that the CA-125 was not a good test for you...perhaps that's involved as well. I would trust the CT scans. They are what indicates whats happening. If you show no progression, than there isn't progression. I think that's the most important. What does Dr. S say?
All ca125 testing was delayed due to reagent problems. My blood sample from 12/22 was stored to be tested when new reagents were available. I guess it is possible to have a giant leap. I didn't call the doc. I got the results online. Do you go online for lab access? I DO have an increase in bowel symptoms. When I was tested I was having LOTS of diarrhea for several weeks which was a common drug reaction. Either way, I can try to rationalize it but a jump is a jump. I think they did take anothe sample on Friday, the day I started my new treatment. I don't see that marker posted yet.0 -
Hi Nancy
I just wanted to say first off, I love your updated family xmas photo. What a beautiful family you have. Secondly, I love that no matter what is going on with you, you are always so kind and supportive to everyone else, yet you don't sugarcoat anything.
Lastly, I am sorry to hear about the CA increase but as other's have said, it hasn't been a reliable marker for you, and maybe it will come down super fast once this new treatment kicks in. It sounds like you are still feeling pretty good and not having much in the way of symptoms other than some bowel issues. We are all praying and rooting for you. Let this new treatment be the one... Hugs, Cindy0 -
CT/Scan
Nancy, I know that had to be a blow to you. I think the CT/Scan would have shown something with such a big jump in the CA125.
Could they give you a PET/Scan and maybe that would have some answers? I agree that you are one of the ones that are always so supportive and give your honest opinion no matter what.
I am praying that the Avastin/Cytoxan is the remedy for you. BTW I still haven't started with the Avastin for me yet due to the shingles I still have. I had a CA125 draw the other day and I haven't gotten the results of it yet; however, my cancer had grown in two months and since I am not on anything right now... scares me to death.
Nancy, I am praying for you, your husband and those two little sweet boys.
Linda0 -
Nancy, you are on my mind
and in my prayers. I so want you to find something that works so that you can enjoy your life and little ones for years to come. I don't know if you remember that you were one of the people who replied with hope when I first came to this site with stage IV. Your hope became my hope. You helped me feel that I could put up with the hated colostomy bag and whatever else I would have to endure. My son turned 20 on December 27th. He was born with a rare genetic syndrome that severely effects his limbs and platelets. We never dreamed how independent he would grow up to be. He drives, goes to college (straight A's last semester), and is researching plans to attend USC school of Journalism in a year and a half. I want to be at his graduation! I want you to be at your children's graduations! That is my prayer for you!
Christine0 -
I am Prayingnancy591 said:testing
All ca125 testing was delayed due to reagent problems. My blood sample from 12/22 was stored to be tested when new reagents were available. I guess it is possible to have a giant leap. I didn't call the doc. I got the results online. Do you go online for lab access? I DO have an increase in bowel symptoms. When I was tested I was having LOTS of diarrhea for several weeks which was a common drug reaction. Either way, I can try to rationalize it but a jump is a jump. I think they did take anothe sample on Friday, the day I started my new treatment. I don't see that marker posted yet.
Dear Nancy,
Perhaps it's denial but I cannot believe it jumped so much...Please ask Dr. S what he thinks...we don't go on line to get results as we always want the doctor to be there for our panic attacks to tell us the reality. Ultimately it what the scans say..truly....I am praying praying praying that Avastin works for you. Are you going into the city for it, or are you going to Sleepy Hollow?0 -
Nancy,sounds like a mistake to me. Ask for a re-draw of ca-125. sometimes it is a fluke as my doc explained to me. Good luck stay strong.....val0
-
Well this sure proves that 'misery does NOT love company'!poopergirl14052 said:Nancy,sounds like a mistake to me. Ask for a re-draw of ca-125. sometimes it is a fluke as my doc explained to me. Good luck stay strong.....val
(((Nancy))). ARGH. We both sit here at the same time with our unexplainable CA125 jumps, and a series of failed chemos behind us, and my oncologist's words echo in my head : "That papillary serous is a nasty character." Misery does NOT love company, kiddo. I take NO comfort in having you in this leaky boat with me; although I feel close to you in part because our journeys are so aligned. But my heart sank at your news.
And so I must believe that we are both about to make course corrections that will get us out of this current mess. OR, as the others are saying, these crazy CA125 jumps are unrelated to cancer progression, errors or other inflammations.
I have another CA125 draw scheduled for Thursday; and a big heart-to-heart also scheduled with my chemo oncologist. If my platelets have recovered (it will be 5 weeks on Thursday since I had my last chemo!!) I hope I will be able to get a very weak dose of carboplatin to hold me while we figure out what to try next if my bone marrow won't let me get chemo. I had my last every-3-months CT/PET scan November 29th, and wonder if they will move up my scan in the hopes of figuring out what the CA125 increase is about. So you are still in a better position than I am because you are able to currently GET chemo. AND you have a recent CT/PET to reassure you that you aren't dealing with some big cancer progression. My oncologists ALWAYS trust scans over CA125 which they consider a fickle indicator. Keep that in mind and try not to worry too much over this. You have a scan you should trust more than the stupid CA125 number. ((((Nancy))))
How do you feel on the new chemo? I looked it up as an idea to suggest for myself on Thursday. It looks like a powerful combo, but you are young and strong and a fighter. Try not to let your mind run wild until you get a chance to talk with your oncologist about it.0 -
I am so sorry to hear this
I am so sorry to hear this and it deeply saddens me. Since the results are so radical I hope they rerun the test. It would seem logical when something this dramatic happens. While labratories have to have outstanding credentials, sometimes there is error. My thoughts are with you. Susan0 -
thanks everyonelindaprocopio said:Well this sure proves that 'misery does NOT love company'!
(((Nancy))). ARGH. We both sit here at the same time with our unexplainable CA125 jumps, and a series of failed chemos behind us, and my oncologist's words echo in my head : "That papillary serous is a nasty character." Misery does NOT love company, kiddo. I take NO comfort in having you in this leaky boat with me; although I feel close to you in part because our journeys are so aligned. But my heart sank at your news.
And so I must believe that we are both about to make course corrections that will get us out of this current mess. OR, as the others are saying, these crazy CA125 jumps are unrelated to cancer progression, errors or other inflammations.
I have another CA125 draw scheduled for Thursday; and a big heart-to-heart also scheduled with my chemo oncologist. If my platelets have recovered (it will be 5 weeks on Thursday since I had my last chemo!!) I hope I will be able to get a very weak dose of carboplatin to hold me while we figure out what to try next if my bone marrow won't let me get chemo. I had my last every-3-months CT/PET scan November 29th, and wonder if they will move up my scan in the hopes of figuring out what the CA125 increase is about. So you are still in a better position than I am because you are able to currently GET chemo. AND you have a recent CT/PET to reassure you that you aren't dealing with some big cancer progression. My oncologists ALWAYS trust scans over CA125 which they consider a fickle indicator. Keep that in mind and try not to worry too much over this. You have a scan you should trust more than the stupid CA125 number. ((((Nancy))))
How do you feel on the new chemo? I looked it up as an idea to suggest for myself on Thursday. It looks like a powerful combo, but you are young and strong and a fighter. Try not to let your mind run wild until you get a chance to talk with your oncologist about it.
thanks everyone for your words of encouragement. My next chemo/ca125 is Jan. 28th.
Linda, I didn't have a PET/CT this time. I had a regular CT scan. That was the protocol for the trial. My onc told me a CT alone is more detailed then the CT portion of a PET/CT. Since the trial protocol required a CT, this is what I got. I am not going to push for a PET. I figure it is not going to change my chemo regimen so why stress myself out. My last PET was in October, I think. My most recent CT did show no new areas, no dilation of the colon, no suspicious bone lesion. So, I am thankful!!! But, I wouldn't exactly describe myself as being in a better position. Actually, I have more areas then you AND I am starting to have bowel issues. Either way you look at it, it sucks.
Yes, I always felt aligned with you as well. Mawty too. We were diagnosed and recurred about the same time. I wonder how she is doing!!!
Hoping your blood levels pick up for chemo on thursday.
Where in PA do you live? Near Scranton?0 -
Hi Nancy
So sorry to read your post. Its funny cos my numbers shot way up into the thousands last October but my CT scan appeared unchanged. I am sure your doctors have plenty of different cocktails of chemos to use and somewhere in there will be one with your name on.
You are not going through this alone, I too am on my second line chemo hoping to put a halt to this beast.
Love Tina xx0 -
Geez, is right. What a
Geez, is right. What a bloody drag. But the CT scan didn't show that much progression so I would take heart from that. Isn't surgery an option? I could be anything that made the number go up so high. You know how it goes with that number.. it's always hard to say. You could have a mild infection you aren't even aware of.
I was on Avastin/Taxotere and it worked great for me so take heart. Disease is back for me after only 2 months so don't know what's next. I too have run thru a lot of drugs.
Keeping my fingers crossed.
-Kate0 -
No Avastin doesn't affectCafewoman53 said:avastin
i'm not sure but doesn't avastin make your ca numbers out of wack? i hope that is the case for you. hang in there !
Colleen
No Avastin doesn't affect the CA125 numbers at all. I was on it for six infusions and my numbers went steadily down. Too bad they didn't stay down. :-(0 -
CA125 level?nancy591 said:thanks everyone
thanks everyone for your words of encouragement. My next chemo/ca125 is Jan. 28th.
Linda, I didn't have a PET/CT this time. I had a regular CT scan. That was the protocol for the trial. My onc told me a CT alone is more detailed then the CT portion of a PET/CT. Since the trial protocol required a CT, this is what I got. I am not going to push for a PET. I figure it is not going to change my chemo regimen so why stress myself out. My last PET was in October, I think. My most recent CT did show no new areas, no dilation of the colon, no suspicious bone lesion. So, I am thankful!!! But, I wouldn't exactly describe myself as being in a better position. Actually, I have more areas then you AND I am starting to have bowel issues. Either way you look at it, it sucks.
Yes, I always felt aligned with you as well. Mawty too. We were diagnosed and recurred about the same time. I wonder how she is doing!!!
Hoping your blood levels pick up for chemo on thursday.
Where in PA do you live? Near Scranton?
Nancy,
What did he say about the jump up that was drawn on the 22nd and did you get the one from last Friday? I think I read your schedule right. That just doesn't sound right because there was not real change in your scan. You all are so really more informed about the stats and terms than I am but that seems odd. I was on on Avastin & daily Cytoxin for 6 treatments (still on Cytoxin). I had no side effects other than the high blood pressure and the last urine test showed a rise in the protine so my doctor stopped the Avastin and I have an appointment with Dr. S. at MSK on the 21st to see if there is a clinical trial that fits. If not, I will go on some other treatment. I am not in remission but the areas have had no change. I just hope the best for you and that these treatments that you are on now are easier for you than what you have been through.
Joni0 -
GOOD LUCKjloe said:CA125 level?
Nancy,
What did he say about the jump up that was drawn on the 22nd and did you get the one from last Friday? I think I read your schedule right. That just doesn't sound right because there was not real change in your scan. You all are so really more informed about the stats and terms than I am but that seems odd. I was on on Avastin & daily Cytoxin for 6 treatments (still on Cytoxin). I had no side effects other than the high blood pressure and the last urine test showed a rise in the protine so my doctor stopped the Avastin and I have an appointment with Dr. S. at MSK on the 21st to see if there is a clinical trial that fits. If not, I will go on some other treatment. I am not in remission but the areas have had no change. I just hope the best for you and that these treatments that you are on now are easier for you than what you have been through.
Joni
Did your cancer stay stable for the duration? Are you currently in remission? To view all the ovarian trials at MSKCC go to:
MSKCC.org, ovarian cancer, clinical trials. Let me know which one you are interested in. I did the one called Oral ENMD-2076 for women with recurrent plat resistant ovca.
I'm curious to see what he suggests. What treatments have you had thus far?
I didn't call the lab or doc about the ca125. What are they going to say? They must not have drawn one at my last visit. I will ask to have one drawn at my next infusion on Jan. 28th.
GOOD Luck!!0 -
Not sure what trail he will suggestnancy591 said:GOOD LUCK
Did your cancer stay stable for the duration? Are you currently in remission? To view all the ovarian trials at MSKCC go to:
MSKCC.org, ovarian cancer, clinical trials. Let me know which one you are interested in. I did the one called Oral ENMD-2076 for women with recurrent plat resistant ovca.
I'm curious to see what he suggests. What treatments have you had thus far?
I didn't call the lab or doc about the ca125. What are they going to say? They must not have drawn one at my last visit. I will ask to have one drawn at my next infusion on Jan. 28th.
GOOD Luck!!
My gyn/onc is sending me to him to see what trial he thinks would be good for me. My doctor will take a look at the suggestions and decide what would be best for me. Go with a trial or just stay on the garden veriety. I have had almost every combination of chemo via IV & IP (over 40 treatments in 5 years). I am not in remission but considered "stable" since there was no change in the 2 areas from a CT/PET in Aug 2010 and another in Dec 2010. My CA124 is always low so not a very good indicator for me. My doctor does not feel that there is any urgency to remove them and prefers to continue with just chemo for now. Scares the hell of me but I know he knows what he is doing. I have also had a lot of surgery (9) so if he can delay one, it's best for me. I suspect that he will be removing them if there is no change when I do another scan. The waiting between treatments really gets to me but we all go through it. I hope the new round of treatments are easy on you. It seems like you really need a break from all of this. Maybe we'll see each other on the 6th floor one day.
Joni0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards