CA 125 continues to rise

Ro10 said:

Asked about port not able to be used for PET scans,
Today I asked the radiology RN why a port cannot be used for the PET scan. She said they use such a small amount of contrast for the PET scan and they are afraid the contrast will stay in the port and not be distributed throughout the body like it will if it is injected into the vein. That would affect the results if the contrast stayed in the port.

The lab person is the one who told me the glucose solution was too thick for the port.

I only had the CAT scan and had to drink the Barium drinks. I had to drink 450 ml at 8:00, 9:30 and 11:00. I did not think I was going to be able to keep it down. I don't know if it was the consistency or what, but I did not like it. I had banana flavor. It did not really taste like banana, but did smell like banana. They give you the barium drink to start at home, other wise you need to go to the radiology department 2 hours ahead of time and drink the contrast there. I will opt to do that the next time, rather than drink that barium stuff again.

Won't get my results until next Tuesday when I go see the doctor again.

Linda hope your PET/CT went well and you get good results. In peace and caring.

{{{RO}}}
I will be thinking of you and praying for everything to be ok for you. Norma

lindaprocopio said:

Just back from my CT/PET: no results yet, of course.
I just got back 1/2 hour ago from my CT/PET test. They were able to use my Power Port to give me the radioactive stuff for my PET, although the technician said they now have to give 30 cc's (not sure of that 30 number; but that's what I think I remember, anyway quite a bit more) of the heparin port flush just before they inject the other stuff in there so that it doesn't pool up near the port. I didn't have to do the barium thing for the CT part, but did have to drink the 2 styrofoam cups of the Crystal Lite stuff. Between 'drinks' they sent me up to oncology to get my port rigged to be accessed (where I ALSO got the heperin flush!); and after it was over they sent me back up there to have the rig unplugged from my port.

I am ashamed to admit that I actually cried during the last minute of the PET. My shoulders started hurting within minutes of having to raise them over my head on the narrow u-shaped place where your head goes on the table. I think it must pinch a nerve in my shoulders because my hands go numb immediately and the pain gets steadily worse as the minutes pass until I could feel tears pooling up in my ears as they ran down my cheeks. I made it until almost the end of the scan before I was crying enough that my chest was moving from trying to hold back the sobs. They said that wouldn't affect the scan. Hope not. I was so good about not eating any carbohydrates all day yesterday, and having nothin but water all day today until my 3 PM scan. I didn't even touch my Valentine chocolates until I got home!!

I do wish and pray you both
I do wish and pray you both have good results!

Ro10 said:

Had lab today
My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.

How did it go?
Hi Ro,

I have been thinking a lot about you. How did your appointment go?

Talk Soon,

Amanda

Ro10 said:

Got CAT scan results today

The good news is I don't have to go back for 6 weeks, but will need repeat lab and CAT scan again. This CAT scan showed some questionable lymph nodes from the previous CAT scans. They are in three different areas. He does not feel it is time to treat yet, but continue to observe and repeat the CAT scan. He said the likehood of going back on treatment is 100 per cent, but he can't say when. He said I have a slow reoccurence. He said that waiting for treatment would not effect my prognosis.

I asked about a PET scan. His answer was the same that people most get. Insurance companies don't want to pay for uterine cancer diagnosis. He feels that the CAT scan will give adequate results to show if the nodes are growning.

Because it has been 6 months since I had my last chemo treatment, I will be able to go back on the chemo I previously took. My CAT scan will be the first week of April. I want to get the gynocologist/onocologist's opinion on when to start treatment and what his recommendations are for follow-up. The onocologist in Quincy is not a gyn specialist, but will follow this doctor's recommendations.

He said the chemo will be every three weeks, like it was before. He said he could not say how many treatments would be needed. It would depend on how I respond to the treatments. I asked about Doxil and he said he would use the Taxol/ Carboplatin first.
He also said that Doxil is not so toxic to the heart......like Adriamycin (an older chemo drug) was. He said Doxil has been around for about 10 years and is approved for ovarian cancer, but not uterine cancer. Even though UPSC acts like ovarian.....insurance companies don't recognize that.

If I need to start treatment right away we will return to Illinois and start the treatment there. If we are continuing to observe, we will see what the weather is in Illinois as to when we return. I continue to feel very good. The doctor said as long as I don't have any symptoms we will continue to observe. Please keep the prayers coming.

So we will try to put this on the back burner and enjoy the next 6 weeks, and enjoy each day as it comes. In peace and caring.

{{{RO}}}
I will be thinking of you and hoping for the very best for you. You are in my prayers.

kkstef said:

Thanks for the update, RO
RO...It was good to hear from you. I also have been wondering how you were doing and what you found out. I will keep you in my thoughts...wishing very positive vibes! You are such a calm, caring person and truly an inspiration to me!!

Karen

(((Ro)))). Huge hugs, sweet girl!
So glad that you have 6 weeks to continue to enjoy life before your next CT. How different oncologists are! My CA-125 went up, and I had a similar CT-scan as you had with 3 lymph nodes possibly in play, but I was given a PET scan the next week and was in chemo the week after that. But, honestly, I think the surgeon that put in my port explained it best. He told me that with recurrance, so often the patient drives the treatment decision because some people are just happier if they are DOING something about their cancer, whether it changes their overall prognosis or not. He told me that some people cannot relax and be happy during their out-of-treatment time once they know something is wrong, and are actually more relaxed and happy if they feel they are doing something to control what is happening to them. I was offered the option of waiting a month or starting chemo right away, and I went for the chemo. I wonder if that offer was made because psycologically my oncologist thought I needed to DO something about my recurrance. I wonder how much that attitude will play into what I do next.

I got my 'official' results from my chemo-oncologist Friday morning, which turned out to be exactky the same as the UN-offical results I posted earlier. My oncologist said "Congratulations! It looks like we got your cancer back under control!" He said 2 of the lymph nodes that lit up on my November PET scan were no longer visible, and that the para-aortoc lymph node that lit up in November is now only 12mm and 'not active'. I asked what that meant since my CA-125 went up 2 points the week before, a seeming contradictory indicator. He said we'd talk about all that on Thursday during my appointment. We agreed that I should have another CA=125 drawn that day. So I'll get his opinion and then see my gyn-onc Monday and get his opinion. I'll be sure and post and let you all know what they both had to say.

RO, I'm so sorry that you have wandered over into our little 'recurrence group' and hope that we can support and encourage each other in this next leg of the journey. I know the awful sinking feeling, almost worse than originally finding out you have cancer. Because now the battle looks endless and un-winnable, and the hope of a cure is discouraged. I like the way your oncologist thinks and I will take that new input into my upcoming 'treatment decision' appointments and try and be open-minded to taking a chemo break if it is recommended. My fear has been that the cancer would 'get out' of my lymph nodes and invade a nearby organ. Perhaps this fear is ungrounded or exaggerated in my mind?? I need to ask that. If the cancer is unlikely to wander into a nearby organ, maybe i can relax and not take a maintenance chemo to try and keep it contained within the lymph system. Does anyone have any knowledge about that?

Ro10 said:

Thanks everyone for your support and kind words
Linda my lymph nodes are apparently much smaller than yours have been. My changes have been very minimal mostly about 1mm changes. One pre-tracheal node went to 1.4 cm X 0.7cm from 1.0cm X 0.6 cm. That is why the doctor just wants to observe. He says different radiologist can interpret the readings differently. Makes you wonder why when you have the CAT scan done at the same facility, the same radiologist does not interpret them.

My doctor did say that some people would start chemo because as you said they feel like something needs to be done. He told me previously in the fall that he wanted to save the chemo for when it would do the most good. That is why he does not treat the CA 125 but only when the CAT scan shows something. He said he is sure the CA 125 will continue to elevate in 6 weeks, because it has been gradually raising each test.

When I was first diagnosed the doctor told me the likelood of being cured was slim, but hopefully it could be treated like a chronic disease. Therefore I have never thought about a cure.......rather prolonging treatments. I had just hoped for a much longer time to prolong the treatment.

I am glad your official report was as good as the Unofficial report. I don't think that your fear of the cancer getting to a nearby organ is unfounded. Because this cancer is so "sneaky" and aggressive it is very likely possibility. Because the lymph system goes throughout the body like the circulatory systems, these cells can travel anywhere.

Hope your appointment on Monday gives you some peace of mind. You have been through so much. I admire you so much. I hope you are finding time to enjoy each day.

I appreciate all the support and encouragement everyone offers. It means so much. It is so good to be able to express yourself and not be judged that your thinking is wrong. I still strongly believe that God has a plan, and I pray for the strength and courage to accept his plan ( and not question the plan, too much, which sometimes is easier said than done). In peace and caring.

Ro
Sending more hugs, thoughts and prayers your way...

Laurie

lindaprocopio said:

(((Ro)))). Huge hugs, sweet girl!
So glad that you have 6 weeks to continue to enjoy life before your next CT. How different oncologists are! My CA-125 went up, and I had a similar CT-scan as you had with 3 lymph nodes possibly in play, but I was given a PET scan the next week and was in chemo the week after that. But, honestly, I think the surgeon that put in my port explained it best. He told me that with recurrance, so often the patient drives the treatment decision because some people are just happier if they are DOING something about their cancer, whether it changes their overall prognosis or not. He told me that some people cannot relax and be happy during their out-of-treatment time once they know something is wrong, and are actually more relaxed and happy if they feel they are doing something to control what is happening to them. I was offered the option of waiting a month or starting chemo right away, and I went for the chemo. I wonder if that offer was made because psycologically my oncologist thought I needed to DO something about my recurrance. I wonder how much that attitude will play into what I do next.

I got my 'official' results from my chemo-oncologist Friday morning, which turned out to be exactky the same as the UN-offical results I posted earlier. My oncologist said "Congratulations! It looks like we got your cancer back under control!" He said 2 of the lymph nodes that lit up on my November PET scan were no longer visible, and that the para-aortoc lymph node that lit up in November is now only 12mm and 'not active'. I asked what that meant since my CA-125 went up 2 points the week before, a seeming contradictory indicator. He said we'd talk about all that on Thursday during my appointment. We agreed that I should have another CA=125 drawn that day. So I'll get his opinion and then see my gyn-onc Monday and get his opinion. I'll be sure and post and let you all know what they both had to say.

RO, I'm so sorry that you have wandered over into our little 'recurrence group' and hope that we can support and encourage each other in this next leg of the journey. I know the awful sinking feeling, almost worse than originally finding out you have cancer. Because now the battle looks endless and un-winnable, and the hope of a cure is discouraged. I like the way your oncologist thinks and I will take that new input into my upcoming 'treatment decision' appointments and try and be open-minded to taking a chemo break if it is recommended. My fear has been that the cancer would 'get out' of my lymph nodes and invade a nearby organ. Perhaps this fear is ungrounded or exaggerated in my mind?? I need to ask that. If the cancer is unlikely to wander into a nearby organ, maybe i can relax and not take a maintenance chemo to try and keep it contained within the lymph system. Does anyone have any knowledge about that?

your official results

linda,

i was so glad to hear your official results matched your unofficial ones, and that your cancer is under control. i, too, would be interested in knowing whether the cancer cells can wander from lymph nodes to nearby organs; i do hope we can relax about that. sorry, not to have more knowledge. i appreciate your constant curiosity and interest in finding out more and more about our cancer; i'm not really like that. for me, it's worked to read what you and others have said, talk to my doctors, and basically try to live my life. i can get overwhelmed with too much information, but i have to say, what i learn new on this discussion board is almost always helpful. also, sad and depressing some of the time as well. i'm hoping for everyone's continued good health. i know there are women here who are facing more cat scans, ca 125, etc. i do know that a few points up or down on the ca 125 are not meaningful, and it's often true that they can level off. my acupuncturist has said it's the trends they look at primarily, not individual numbers, though if there's a big spike, a new ca 125 is usually requested.

early on, linda, you responded to my query re: even doing chemo. you encouraged me wholeheartedly, which i appreciated. i have done the chemo, got through it, though sometimes difficult, not unbearable. and am not doing radiation. the tumor board where i see my doctors (northern california) do not recommend radiation, though my gyn onc does--the brachey kind. but, i don't think it's worth it, and most of the other doctors don't either, since i did not have cancer in the area they would radiate.

it's been only 3 months since my last chemo, and ned, and i'm feeling good so far. it's all such a crap shoot, though, no rhyme or reason, and so out of our hands. i'm used to controlling a lot of my life, as i know so many of us are here, so it's such a blow on so many levels to not be able to really make much of an impact on this disease--other than visualizing healthy cells, and doing all the things we know to do to make our bodies as inhospitable to cancer cells as we can.

while i don't post much, i 'm so grateful and appreciative of everyone here.

warmly,
maggie

Ro10 said:

Got my latest test results today
My CA -125 is up to 645 (from 449 in October. Again the doctor said "it is just a number". The CAT scan shows minimal increase in the lymph nodes they have been observing. The doctor says the growth is very slow.

He gave me three options:
1. Do nothing and continue to observe with tests in 2 - 3 months.
2. Start back on chemo. It would be Taxol/Carboplatin like before. (But chemo is hard on the body and blood work). He said some people do develop an allergy to the Carboplatin.
3. Try hormonal therapy. Take one pill a day for 2 months and recheck CA 125 after the 2 months. The doctor said sometimes the hormone stabilizes the CA 125. He said it is usually used in breast cancer. He said it could be either Tamoxifen or Arimidex.

He said he knew it was a tough decision to make, but if I were to ask him what he would do, he would try the hormone therapy.

He said if the hormones do not work, we could always use the chemo. He said since I have no symptoms and feel so good, the chemo would have much more side effects than the hormone therapy. He said he did not want to start chemo too soon (for better quality of life - right now) but did not want to wait until the cancer made me feel so bad that the chemo would make it worse. He again emphasized that this cancer was not curable, but treatable.

I asked about a HER- positive or HER negative tumor. He said he did not know if that test was done on my tumor. But he felt the hormones were worth a try for 2 months.

I asked how high he has seen the CA 125 go up on people with UPSC, and not need treatment. Again he said it is just a number. Some people have minimal increases and need treatment, others have bigger increases and still do not need treatment. He said ovarian cancer patients can have CA 125's in the thousands. So he really would not give me an answer. But emphasized, I would need chemo again, sometime, whether now or later.

So I went with option number 3 and will start Arimidex for 2 months and have my CA 125 rechecked in 2 months. The pharmacy did not have it today, so I hope they get it in tomorrow. So I will treatment free for at least two more months. My husband and I are celebrating. In peace and caring.

Ro
Do just that celebrate with your husband and take one day at a time. Much comfort. June.

nempark said:

Ro
Do just that celebrate with your husband and take one day at a time. Much comfort. June.

Chocies, choices, choices
Ithink you made the right choice. It can't hurt to try as long as he is watching you closely. Chemo is always there if you want to go that route.

She gave me the option of continueing avastin for 18 months for maintenance. I don't really feel sick on it so I will give it a try. I am not sure if the 18 months includes the 8 I have already had. It is controversial and she gives me the choice. It's hard to make choices, isn't it? I also think we are all different and different choices have to be made. I've done well with avastin/doxil so I will try it. I can always stop if not working. You enjoy the holidays.

Love,
Diane

Ro10 said:

Got my latest test results today
My CA -125 is up to 645 (from 449 in October. Again the doctor said "it is just a number". The CAT scan shows minimal increase in the lymph nodes they have been observing. The doctor says the growth is very slow.

He gave me three options:
1. Do nothing and continue to observe with tests in 2 - 3 months.
2. Start back on chemo. It would be Taxol/Carboplatin like before. (But chemo is hard on the body and blood work). He said some people do develop an allergy to the Carboplatin.
3. Try hormonal therapy. Take one pill a day for 2 months and recheck CA 125 after the 2 months. The doctor said sometimes the hormone stabilizes the CA 125. He said it is usually used in breast cancer. He said it could be either Tamoxifen or Arimidex.

He said he knew it was a tough decision to make, but if I were to ask him what he would do, he would try the hormone therapy.

He said if the hormones do not work, we could always use the chemo. He said since I have no symptoms and feel so good, the chemo would have much more side effects than the hormone therapy. He said he did not want to start chemo too soon (for better quality of life - right now) but did not want to wait until the cancer made me feel so bad that the chemo would make it worse. He again emphasized that this cancer was not curable, but treatable.

I asked about a HER- positive or HER negative tumor. He said he did not know if that test was done on my tumor. But he felt the hormones were worth a try for 2 months.

I asked how high he has seen the CA 125 go up on people with UPSC, and not need treatment. Again he said it is just a number. Some people have minimal increases and need treatment, others have bigger increases and still do not need treatment. He said ovarian cancer patients can have CA 125's in the thousands. So he really would not give me an answer. But emphasized, I would need chemo again, sometime, whether now or later.

So I went with option number 3 and will start Arimidex for 2 months and have my CA 125 rechecked in 2 months. The pharmacy did not have it today, so I hope they get it in tomorrow. So I will treatment free for at least two more months. My husband and I are celebrating. In peace and caring.

Keep Celebrating, Ro!
Ro, I am glad that you will continue to have a break from chemo while you see if hormone therapy works for you! That may be the missing puzzle piece!

I am continuing to send you positive energy. Enjoy the Holiday season!!

Big Hugs!

Karen