8 years post chemo (Recap of Lost Posts, Topic Created by snyderpm on Dec 24, 2018)

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cmb Member Posts: 1,001 Member

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

snyderpm

Dec 24, 2018 - 11:57 pm

Hi to all.  I haven't been here is several years, and the last time I got a lot of advice and support.  My last chemo was March 21, 2011, and I have been good to go since.  All scans were negative, with ca 125 at 3-6, and had it done every 3 months.  I was diagnosed in Nov 09 with uterian cancer, had Da Vinci complete hysterectomy in Jan 2010 showing very minimal cancer cells in my uterus and nothing anywhere else.  Doctor said it was less than 10% chance of returning.  In 2 months it was back, and by the time they operated, Nov 2010, cancer cells were all over my organs and a 2cm tumor in my Omentum.  Took the omentum out and scraped off all the cells they could see, then 4 rounds of Carbo/Taxol, and that was it.  

As I posted, it has all been good since.  Well, I had my 6mo checkup with chemo doctor and blood taken.  My ca 125 was 10.  I know it is still real low, but it has only been single digit for almost 8 years.  I have been getting steroid shots in my left hip preiformis because of a lot of inflammation and sciatica, if that could do anything to my ca 125.  Something else I would like to mention is I have had the thought that I was contaminated during the Da Vinci and that is why my cancer came back.  Anyway, chemo doctor said we would just take ca 125 again in 2 months, but I said I wanted a scan, so Friday I having a CT scan. 

Just wondering what you all think about the ca 125 increase?  

 

pinky104

Dec 25, 2018 - 1:20 am

CA-125 Level Increase

I am also an 8 year UPSC survivor.  At first, my CA-125 levels were in the 8's then in the 7's and 6's.  Then in June, 2016, they went up to the 9's.  I worried but was told I shouldn't worry.  In Feb., 2017, they were up to the 14's and again, I was told not to worry.  Coincidentally, a little while after that, I had a hemoccult test that came out positive.  I waited for about 3 weeks for a GI consult and then a colonoscopy, which showed cancer wrapped around the outside of my ascending colon, which happened to show through the wall of the colon from the cameera which was taking pictures of the inside of it.  I then had a CT scan, a PET scan two days later, and was rushed to surgery less than a week after the PET scan, before I ended up with a bowel obstruction.  My CA-125 two weeks AFTER surgery was 129.2.  It was a ridiculous increase in a two month period.

That being said, I have heard that inflammation is one of the things that can raise a CA-125 result.  I had a cold once and the result went up, and that's what I was told.  I asked my GYN/onc. when I should be seen by him if it started going up again, based upon the fact that my CA-125's have always been accurate.  He told me to contact him if between appointments, it got up to 20.  I alternate between seeing him (or one of his employees) and another oncologist in a different hospital where I used to work.  The times my result went up to 9 and 14, I was seeing other people besides him.  Once it was his nurse practitioner, and once, it was my oncologist in the hospital where I'd worked.  It was reassuring to know that he would do something if the result hadn't yet surpassed the cut-off for the normal range.

 

snyderpm

Dec 25, 2018 - 12:56 pm

pinky 104

Thanks for telling me that.  I do know that inflammation can cause ca 125 to increase.  It just dawned on me last night that I have been having some dull pain, occasionally, in my left side below ribs, where my stomach is, or could be intestines.  I have acid reflux, just like my mother, so I guess it is in my genes.  I have been taking Prevacid and others for 17 years.  I am not overweight, and I eat simple, but I do drink some wine, and it doesn't help.  I have an appointment with my gastro doctor in Jan.  Of course I might cancel if the CT on Friday if it shows cancer.  I can't believe I have cancer the way I feel, but I guess I could have a little.  I will be 75 in Feb, and I don't know if I can stand all that chemo again.  I still ride my horse several days a week, and keep busy.  People are always telling me how tough I am, but they are wrong, as I am not tough physically, but I am tough mentally.  

Also, I didn't have UPSC, just plain adenocarcinoma.  I hope all that is behind you and you are doing good now.  

 

snyderpm

Jan 04, 2019 - 11:48 am

your recurring cancer

Hey Pinky, I would like to ask you how you were feeling before you got the diagnosis of colon cancer?  Pat

 

pinky104

Jan 04, 2019 - 8:28 pm

Reply to snyderpm

Sorry to take so long to reply.  I didn't see your question before today.  I didn't actually have colon cancer, which would be a separate cancer.  I had mets from the UPSC to the colon and other places.  I kept complaining to various doctors about some abd. pain I was getting.  It really felt like my incisional hernia was back.  It was hurting when I lifted heavy things and when I moved around getting into bed.  One PA working for my oncologist told me it was probably adhesions from surgery.  I don't know to this day if it was from the cancer itself or if it was from my intestines growing into the mssh placed in my incisional hernia surgery.  I had a little pain with the bowel movement when I was providing the stool for the hemoccult test.  Apparently, that was because I was bleeding at that point, although I couldn't actually see the blood in the smear I provided.  It took a microscope for the doctor to see that.

I've had pain three different times this year while bending over to pull up the covers in bed.  Two were before my last appointment with my GYN/onc.  He said that if it continues, I should see the general surgeon who he had come in during my cancer surgery and do a resection of the intestines to free up the intestines from the mesh.  He also said that it could be just adhesions from surgery, though.  My CA-125 was exactly the same number it had been after surgery, so he wasn't worried that the cancer might be back.  My CA-125's have always been accurate, so when it starts to rise I know there's a problem.  He told me to get checked when it's at 20.  I alternate between seeing him and another oncologist, so I get checked every 3 mos. by one provider or the other. 

I had viral gastroenteritis the Friday before Christmas, which knocked me for a loop.  I still don't feel totally back to normal.  I get my CA-125 checked again later this month, and I hope it won't have gone up any.  I had that bad pain when pulling up the covers in bed again last night.  It worries me.  I hope it is just adhesions, but it wasn't the last time.  I'm fatigued, but that could be from the shorter days we're having.  I don't have a lot of energy or appetite. Both times I've had cancer, it's been diagnosed in late winter to early spring, which seems odd.  I don't usually have many symptoms when I get it.  I don't want to have to deal with it again! 

 

snyderpm

Jan 04, 2019 - 9:43 pm

Wow

Pinky, you are tough, and I will be thinking about you.  Let us know how you are doing. 

 

Northwoodsgirl

Dec 25, 2018 - 1:02 pm

CA125er

I remember you from your postings back in 2009/2010! About your CA125 I don’t think there is a clear answer other than one can never be too cautious. Listen to what Pinky104 went through as a precaution. Pinky you have been through so much!

Seems  like CA125 needs to be taken into consideration with so many other variables. My type of endometrial cancer didn’t use CA125 test as an indicator of disease-just used inflammation markers like C Reactive Protein and Sedimentation Rate to minister inflammation levels.

I am glad you are pushing for the imaging. Inflammation markers are somewhat nebulous when looking at increases, value and over time periods since body inflammation has many causes.

A good thing you are advocating for more aggressive testing with scan! You know one may think that if one has survived 9 or 10 years we would be “in the clear “ so to speak but we know that isn’t the case. I worry about getting colon or breast cancer but keep praying that will never be the case. None of us know what tomorrow may bring that’s for sure! Keep us posted on how you are doing.

(Hug)

Lori 

 

barnyardgal

Dec 25, 2018 - 2:43 pm

I had endometrial

I had endometrial adenocarcinoma 3a and after completing chemo and radiation in June the doctor put me on Letrozole to hopefully prevent a recurrence. I need to be on it for 2-3 years. My gynecologist oncologist said the type (adenocarcinoma) I had is very unlikely to come back after 3 years as it is not as sneaky as UPSC or breast cancer. Of course there's always exceptions but that's been her experience. So hopefully it's just inflammation you're experiencing.

 

evolo58

Dec 26, 2018 - 5:00 pm

Inflammation and CA-125

One reason why CA-125 is an imperfect test.

In October of this year, I had a CA-125 of 770, strongly pointing to a progression after four months post-chemo. I had the Irritable Bowels from Hell at the time I took the October test. It was really awful. I couldn't even pass gas without nasty pain. When I mentioned this to my old doctor (whom I fired) and my new doctor, I was told that was not relevant.

Well because of the switch and the Thanksgiving holiday, among other reasons, it took six weeks for me to get back on chemo. During those six weeks, I did nothing about the squatter cells and nodes that apparently might be planning some trouble. (A CT scan found some areas of concern, but it was not a well-done CT scan ... too many inconsistencies and weasel-words ... so I don't know if I can trust it 100% ... I HATE when that happens!) I worried and rested. That was pretty much it.

I had a test right before my new treatment cycle and it came in at 510. Don't get me wrong. That is still way, way too high, and I would be really, really overconfident and over-optimistic if I assume it's only because of nuisance bowel problems and tummy trouble. I am not willing to bet my life (literally) on wishful thinking. But a 260 point drop after six weeks of doing nothing (about a third less) is awfully strange, and could prove that inflammation can cause some weird things to happen to your CA-125. I thought for sure after six weeks, I'd be up to 1000 or so.

I have read on other forums, including ovarian, how benign inflammations can cause some pretty steep jumps. Only further tests can really give the doctor a better picture.

 

snyderpm

Dec 26, 2018 - 11:08 pm

evolo58

All that seems like hell to me.  I can stand the operations and treatments better than the waiting and worrying.  345 is the highest my ca 125 has eve been, and that was before I was operated on the 2nd time.  Like you, I was having some stomach pain from having my 8oz of wine, but it is completely gone now because I haven't had any since Saturday.  Can't have any fun.  I am hoping that is why my ca 125 flared up some.  They say that the ca 125 is really sensitive to any inflamation in the abdomen/pelvic area.  I hope everything is going better for you.

 

snyderpm

Jan 03, 2019 - 12:05 am

Results of CT scan

Wanted to let everyone know that I got my results of the CT scan I had Fri 28.  Clear, no sign of any metastatic cancer, relief.  But, until they take another blood for ca125 and it is back to 4-5, I won't feel real relief.  Cat scans do not detect cancer cells, as it has to be a tumor.  I wish they would have done a CT/PET scan.  

 

ConnieSW

Jan 03, 2019 - 3:53 pm

CT results

so far , so good. 

 

Northwoodsgirl

Jan 04, 2019 - 8:45 am

CT results

That is preliminary good news as I understand your wanting a PET scan. I hope you can find some comfort in the CT scan results. CA -125 values are so anxiety provoking.

 

Universe

Jan 04, 2019 - 7:42 pm

Happy for you synderpm

And you give us hope :-)

Comments

  • snyderpm
    snyderpm Member Posts: 40
    edited February 2019 #2
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    new ca 125

    Hi everyone, just wanted to let you know that my blood was taken Mon 18 Feb, for a full blood panel and ca 125.  My blood panel was back to normal and ca 125 was 5.  What a relief.  I guess when I had it taken in Dec, I had just had my piriformis injected with steroids, 2 days before, and that screwed up my blood work, and I had a lot of inflamation in my hip plus the needle injection causes more inflamation and all that caused my ca125 to increase a little.  I know I probably got carried away about the increase, but as you know cancer is not fun.  Thanks for all the carring and support.  Pat

  • cmb
    cmb Member Posts: 1,001 Member
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    snyderpm said:

    new ca 125

    Hi everyone, just wanted to let you know that my blood was taken Mon 18 Feb, for a full blood panel and ca 125.  My blood panel was back to normal and ca 125 was 5.  What a relief.  I guess when I had it taken in Dec, I had just had my piriformis injected with steroids, 2 days before, and that screwed up my blood work, and I had a lot of inflamation in my hip plus the needle injection causes more inflamation and all that caused my ca125 to increase a little.  I know I probably got carried away about the increase, but as you know cancer is not fun.  Thanks for all the carring and support.  Pat

    Good news

    Although your CT-scan didn't show any sign of cancer, the new CA 125 and bloodwork tests are further confirmation that you are still in remission. That is cause to celebrate!

    But we all know of cases where cancer does return, even years later. So vigilience to those things in your body that seem "off" from normal is always a reasonable approach.

    May your good health long continue.

  • Pfeffernusse1
    Pfeffernusse1 Member Posts: 6 Member
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    My CA125 was low for years,always below 10 when in May,2022, it went up to 16.7 to 73.7 in 4/23. In the interim I had cat scans, mri and nothing showed. As I wait for pet scan results from several days ago, I have so many questions with no answers. I had been a stage 3 endometrial survivor for 3 1/2 years but now zip

    If anybody has any thoughts, I'd appreciate them. I'm slowly going crazy waiting to hear from the oncologist.

  • Forherself
    Forherself Member Posts: 989 Member
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    Good morning

    Waiting is so hard. I never had a CA 125. I don't have much confidence in them. I remember a woman whose CA125 dropped from 400 down to 40 and she was so happy. Then recurrence right away. You have the CT scan and MRI that shows nothing. I would concentrate on that. Best wishes for y ou!

  • Pfeffernusse1
    Pfeffernusse1 Member Posts: 6 Member
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    Thanks so much for your comment. I never read anything like you posted. It makes me feel so much better. My eyes have gotten so tired from trying to find out anything. I like your comment and hope it keeps me going until I talk to the oncologist tomorrow.

  • Pfeffernusse1
    Pfeffernusse1 Member Posts: 6 Member
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    I don't want to have anymore treatment. I just want to be done. I was told 3 1/2 years ago my endometrial cancer was gone but now that my pet scan showed 2 masses that are inoperable, I can have treatment but my oncologist said my cancer will recur again and won't ever go away. It'll show up someplace else. Treatment is 6 hours long and I cannot have another person accompany me. I hate it!!! No exceptions. The schedule is 3 sessions, a scan, then 3 more session and another scan. Doctor thinks the new chemo regimen will have good results. I'm not a statistic but a human. I'm 82 years old and have so many other health issues I think I should just give in to cancer. I'm not being dramatic but can't figure out what I'm living for. Any suggestions as to what's wrong with my thinking????

  • Forherself
    Forherself Member Posts: 989 Member
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    Dear Pfessernusse1. I am sorry to read about the recurrence. My first reaction is seek a second opinion. At least you want to be sure that this doctor is correct. Does the doctor say how long the treatment will give you? And are there any immunotherapy drugs that could be used? If you don't have treatment will the cancer be slow growing? I would ask your oncologist those questions before deciding about refusing treatment. There are also Psychologists who specialize in this kind of dilemma. Ask your cancer center if they have some. I read a good book about this decision Atul Gawande "Being Mortal". If you are a reader this is an excellent book. He is a surgeon who operated on a lot of cancer patients, and his own father then got cancer. This is an issue that only you can decide. Palliative care is a good source too. You can have treatment while receiving palliative care. Ask your oncologist about this, or your family doctor. One thing I would do, is make sure this is a decision you won't regret in a year. Do you have family? Hugs to you.

  • Pfeffernusse1
    Pfeffernusse1 Member Posts: 6 Member
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    Hello,

    I asked my oncologist twice for a ball park figure and basically got nothing. Everybody's different,etc. Will be taking Keytruda as well as tx and carbo. Said the cancer masses, while small, are fast growing. Will meet with other oncologist on Thursday just before treatment. Thanks for the book suggestion.

  • MoeKay
    MoeKay Member Posts: 481 Member
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    Hi Pfeffernusse1, my childhood friend was diagnosed with stage 4, grade 3, endometrial cancer in 2017. She went through several treatment regimens including participation in a clinical trial between her diagnosis and 2020. Her cancer would disappear in one place and pop up somewhere else. In 2020, when Keytruda was approved for endometrial cancer, she started on a combination of Keytruda and Lenvima. The Lenvima caused major problems with her blood pressure, so her oncologist dropped it from her treatment protocol and continued her on just the Keytruda. She has had about four clean CT scans over the past several years, with absolutely no evidence of disease. Next month she will have another CT scan, and her oncologist said if that scan continues to show no cancer, the Keytruda will be discontinued.

    I know Keytruda does not work for everyone, but for some like my friend it is truly miraculous. I hope it works miracles for you as well!

  • Pfeffernusse1
    Pfeffernusse1 Member Posts: 6 Member
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    There's a lot of positivity in your post which is quite uplifting. Thank you so much.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,398 Member
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    Pfeffernusse1, please let us know what you find out and what you choose to do.

    Hugs dear one.