Looking for info

FrankDiamond

Hi all,

My wife was diagnosed with Stage 4 uterine cancer in 2008. She had a hysterectomy and chemo and was cancer free up until last August, where the last scan the onc planned on giving her showed that the cancer had spread to her stomach. There was also a spot on her liver and fluid around the lung. The onc saw estrogen receptor positive cells so he started her on Arimidex, even though that's mostly for breast cancer. Her last scan in December showed a lot of shrinking to all tumors. No more fluid around the lungs, either. Her blood work has been very good, as well, up until last week. That test showed that her CA 125 rose from 10 to 21. Still low, but my research tells me it's not what you want to see.

Has anybody else had an experience like this? Since she initially responded so strongly to the Arimidex is it possible that the oncs would have more options at their disposal. We have another scan scheduled for next week. I know that's the definitive test. I guess I'm just reaching out for some hope. She feels and looks great, so that's what I'm focusing on. Thanks for any feedback. 

 

Frank

 

NoTimeForCancer

Wish I had a good husband like you!

How often does she have her blood drawn?  Once every week? 3 months?  We all get nervous anytime there is a change in our CA125 but it could be do to a small infection or any number of things.  I can't answer your question for you but it sounds like she is responding to the treatment. 

HellieC

There are other hormonal options

Hi.  Firstly, I'm sorry to hear about your wife.  But there are several factors which are working in her favour.  Firstly, that it was a good long time between her original diagnosis and treatment and the first recurrence, which is seen as a positive factor in clinical terms.  Secondly, her tumours are hormone receptive and she has had a response to the Arimidex.  Although it is primarily used in breast cancer, many oncologists are now starting to use that class of drug (aromatase inhibitors) for uterine cancer.   At the moment, the rise in CA 125 hasn't gone outside the reference range, although I know that any change upwards is a concern.  The main issue with hormone therapy is that it does tend to work for a limited period of time (although this can be years rather than months).  But the good news is that, having responded to one type of hormone, the odds are favourable that your wife may respond to a different one.  That opens up the possibilities of other aromatase inhibitors such as Letrozole, or some other kind of oestrogen blockade, such as Tamoxifen.  There are also progesterone hormones such as Megace.  So please take heart - there are other options out there if necessary, but hopefully, they are not needed yet and the rise in CA 125 is just a normal fluctuation.
With kindest wishes
Helen

Ro10

Frank welcome to this site

I am so sorry that your wife has cancer.  She is fortunate to have had so many years before a recurrence.  She is also fortunate to have such a caring husband. God bless both of you.

My gyn/Ono always tells me the CA-125 is just a number.  as you have said.....the real definite test is the scan.  As soon as I go off chemo, my CA125 begins to rise.  It got to 1700 before  the CAT scan showed changes and chemo was needed.  That was after 18 months.  I tried Arimidex but after only 7 months my marker went to 3200, and the CAT scan showed increase in the lymph nodes again.  So I had chemo a third time.  

After my third chemo I started Aromasin which is another aromatase inhibitor.  It has been 21 months since my last chemo and my marker has slowly risen to 700.  My CAT scan has shown minimal growth in the lymph nodes.   I never have any symptoms, so I have to depend on CAT scans to determine when chemo is needed again.

I hope your wife's scan comes back okay.   Know that there other choices  of drugs to try.   Tamoxifen is another choice,but I could not take that because risk of blood clots is higher with it.  I have had multiple blood clots in both lungs, so I could not take that.

Please keep us posted.  In peace and caring.

jazzy1

Ro10 said:

Frank welcome to this site

I am so sorry that your wife has cancer.  She is fortunate to have had so many years before a recurrence.  She is also fortunate to have such a caring husband. God bless both of you.

My gyn/Ono always tells me the CA-125 is just a number.  as you have said.....the real definite test is the scan.  As soon as I go off chemo, my CA125 begins to rise.  It got to 1700 before  the CAT scan showed changes and chemo was needed.  That was after 18 months.  I tried Arimidex but after only 7 months my marker went to 3200, and the CAT scan showed increase in the lymph nodes again.  So I had chemo a third time.  

After my third chemo I started Aromasin which is another aromatase inhibitor.  It has been 21 months since my last chemo and my marker has slowly risen to 700.  My CAT scan has shown minimal growth in the lymph nodes.   I never have any symptoms, so I have to depend on CAT scans to determine when chemo is needed again.

I hope your wife's scan comes back okay.   Know that there other choices  of drugs to try.   Tamoxifen is another choice,but I could not take that because risk of blood clots is higher with it.  I have had multiple blood clots in both lungs, so I could not take that.

Please keep us posted.  In peace and caring.

CA125

I was diagnosed 1/09 and had recurrence last August.  My CA marker was always good for me.  During this recurrence it has continually come down...then for some reason has gone up a bit.  Needless to say, the time it went up last Dec. we had just done a PET scan 2 weeks prior.  The scan was showing all good news -- any of the 3 areas with inflammed lymph nodes were either 50% smaller and intense or completely gone.  When I met with my oncologist after both of these, asked him don't you follow the scan results and not the ca125 when both done?????  YES....his quote, "I treat the PATIENT not the number"!!!!

Conclusion from my experience, if she hasn't had a scan recently, recommend one to confirm if the CA125 carries any meaning at this juncture.  If not as in my case, my doc told me he's feeling the ca125 isn't a reliable marker for me as our bodies do change over time.  As well, other things can cause this marker to go up ever so slight such as colds, colitis, inflammation in pelvic area, etc, etc.  

Best to you and your wife~

Jan

debrajo

jazzy1 said:

CA125

I was diagnosed 1/09 and had recurrence last August.  My CA marker was always good for me.  During this recurrence it has continually come down...then for some reason has gone up a bit.  Needless to say, the time it went up last Dec. we had just done a PET scan 2 weeks prior.  The scan was showing all good news -- any of the 3 areas with inflammed lymph nodes were either 50% smaller and intense or completely gone.  When I met with my oncologist after both of these, asked him don't you follow the scan results and not the ca125 when both done?????  YES....his quote, "I treat the PATIENT not the number"!!!!

Conclusion from my experience, if she hasn't had a scan recently, recommend one to confirm if the CA125 carries any meaning at this juncture.  If not as in my case, my doc told me he's feeling the ca125 isn't a reliable marker for me as our bodies do change over time.  As well, other things can cause this marker to go up ever so slight such as colds, colitis, inflammation in pelvic area, etc, etc.  

Best to you and your wife~

Jan

Jan

What if you NEVER have scans?  What do they do the if not ca125?  I had a pre surgery scan and a six week after surgery, one in Sept '09 the next was Jan.'10.  Have never had another scan of any kind.  Once a year I have a chest x-ray and ultra-sound of heart valve.  Other than than a physical internal/pap test, every visit and the ca125 blood test there are never any other test done.  I asked the PA about then and my slightly ca rise and what else do they use.  She said that they go a lot on just your general "icky" feeling.  No scans at all.  Not sure to be gratful or scared!  Opinions?  I'm at M.D. Anderson in Houston ,Texas

Kaleena

debrajo said:

Jan

What if you NEVER have scans?  What do they do the if not ca125?  I had a pre surgery scan and a six week after surgery, one in Sept '09 the next was Jan.'10.  Have never had another scan of any kind.  Once a year I have a chest x-ray and ultra-sound of heart valve.  Other than than a physical internal/pap test, every visit and the ca125 blood test there are never any other test done.  I asked the PA about then and my slightly ca rise and what else do they use.  She said that they go a lot on just your general "icky" feeling.  No scans at all.  Not sure to be gratful or scared!  Opinions?  I'm at M.D. Anderson in Houston ,Texas

Insurance

Debrajo

I recently went through a spell without scans (Aprpoximately 2 1/2 years).  It was becasue of insurance changing they way they did things.   Unless you really had symptoms, they were not going to do any scans.  For example, my insurance would only allow 1 PET scan basically in your lifetime.

Also, I have to tell you that my last two PAP smears were abnormal with my latest one being HPV positive and I have been having symptoms since last February and  I still had a hard time getting a scan. (Finally got a CT scan in June and then in January of this year (insurance denied PET again), but was finally able to get a PET in February.  Probably because my insurance is dumping me at the end of March.

I think I felt better getting scanned once a year.

By the way, if they are concerned about exposing you to radiation as the reason for not getting scanned, asked about the newest form of scan PET/MRI.    It has half of the radiation than of a CT Scan.   

 

Kathy

jazzy1

debrajo said:

Jan

What if you NEVER have scans?  What do they do the if not ca125?  I had a pre surgery scan and a six week after surgery, one in Sept '09 the next was Jan.'10.  Have never had another scan of any kind.  Once a year I have a chest x-ray and ultra-sound of heart valve.  Other than than a physical internal/pap test, every visit and the ca125 blood test there are never any other test done.  I asked the PA about then and my slightly ca rise and what else do they use.  She said that they go a lot on just your general "icky" feeling.  No scans at all.  Not sure to be gratful or scared!  Opinions?  I'm at M.D. Anderson in Houston ,Texas

Debrajo

Good question about no scans and if ca125 isn't good marker then what????  Hum...all I can tell you I had 4 yrs of NED as you know and doc did the ca125 every 3-6 months, and all was going great.  Until last January '13 my CA started to go upward and did notice some nodes,very small, on  lungs.  Then 6 months later  the ca was up again....okay so should I worry?  Doc said no as very small lung nodes, but he'd watch.  Then 3 weeks later the swollen supraclavicular node on neck.  The rest is history as in August diagnosed with recurrence.

Wish it was easy to say not do them and hope you feel something wrong, but if it we me I'd be in docs office a lot.  Who can afford being at docs office that often and would insurance cover...heck no!!!  General icky feelling might be okay, but can we really tell?  At least I had the inflammed node and got me to doc office ASAP.  I've had friends whom were great for years and docs tell them you're fine don't need to see you until another year.  In mean time, something shows up with another health issue requiring some scan and find more cancer.  

What do any of us know, but this cancer can be sneaky.  Do what YOU feel is best and give you the most comfort.  If you're the  nervious nellie, see the doc more often for the scans, etc.  You know with my lung nodes they showed on CT, but had the higher level PET last August comfirming a recurrence, it didn't even show the lung nodes on original CT.  Hum?

We truly can't live in fear, so do some sole searching for what makes you feel the best.

Hugs back at ya,

Jan

debrajo

jazzy1 said:

Debrajo

Good question about no scans and if ca125 isn't good marker then what????  Hum...all I can tell you I had 4 yrs of NED as you know and doc did the ca125 every 3-6 months, and all was going great.  Until last January '13 my CA started to go upward and did notice some nodes,very small, on  lungs.  Then 6 months later  the ca was up again....okay so should I worry?  Doc said no as very small lung nodes, but he'd watch.  Then 3 weeks later the swollen supraclavicular node on neck.  The rest is history as in August diagnosed with recurrence.

Wish it was easy to say not do them and hope you feel something wrong, but if it we me I'd be in docs office a lot.  Who can afford being at docs office that often and would insurance cover...heck no!!!  General icky feelling might be okay, but can we really tell?  At least I had the inflammed node and got me to doc office ASAP.  I've had friends whom were great for years and docs tell them you're fine don't need to see you until another year.  In mean time, something shows up with another health issue requiring some scan and find more cancer.  

What do any of us know, but this cancer can be sneaky.  Do what YOU feel is best and give you the most comfort.  If you're the  nervious nellie, see the doc more often for the scans, etc.  You know with my lung nodes they showed on CT, but had the higher level PET last August comfirming a recurrence, it didn't even show the lung nodes on original CT.  Hum?

We truly can't live in fear, so do some sole searching for what makes you feel the best.

Hugs back at ya,

Jan

@Kathy and Jan

I guess I am ambivalent on the whole thing.  On one hand I want to run to dr. all the time, on the other I'd rather just not know!  My life is lived in shades of gray...never black or white for me!  I have had wonderful insurance...never once a quibble on anything.  Even the Lynch and Braca 1&2 Dna testing was't questioned,b ut then NO ONE has ever ask for MRI or PET and only the two CAT scans.  See what I mean about  grays?  I feel ok physicaly, fat and lazy, glad not to run my behind off since Mama lives with me, but it is somewhat stressful and bad things just keep happening to people and things I care about.  I go back for all the check ups in May so until then I am not going to worry about what may never happen.  I keep thinking I will be like Mama and have a 28 year remission from aggressive breast cancer.  Wouldn't that be something for all of us?!  Best, Debrajo

jazzy1

debrajo said:

@Kathy and Jan

I guess I am ambivalent on the whole thing.  On one hand I want to run to dr. all the time, on the other I'd rather just not know!  My life is lived in shades of gray...never black or white for me!  I have had wonderful insurance...never once a quibble on anything.  Even the Lynch and Braca 1&2 Dna testing was't questioned,b ut then NO ONE has ever ask for MRI or PET and only the two CAT scans.  See what I mean about  grays?  I feel ok physicaly, fat and lazy, glad not to run my behind off since Mama lives with me, but it is somewhat stressful and bad things just keep happening to people and things I care about.  I go back for all the check ups in May so until then I am not going to worry about what may never happen.  I keep thinking I will be like Mama and have a 28 year remission from aggressive breast cancer.  Wouldn't that be something for all of us?!  Best, Debrajo

Debrajo

You Go girl!!!!!  28 yrs is such great news and the words we'd love to never hear back again...you have cancer!!

Sounds like a plan in place for you, so let it go and not worry.  

 

Hugs

Jan

 

FrankDiamond

jazzy1 said:

Debrajo

You Go girl!!!!!  28 yrs is such great news and the words we'd love to never hear back again...you have cancer!!

Sounds like a plan in place for you, so let it go and not worry.  

 

Hugs

Jan

 

Scan results

Thanks so much, everybody, for the support. It turns out that the tumor markers were showing something. The cancer seems to have returned to my wife's stomach. We have a appointment scheduled for Wednesday to see what to do next. I'm sure a lot of you have been in this same situation. Any tips will be appreciated. I guess hope and prayer.

 

Frank

FrankDiamond

Scans not good

Thanks so much, everybody, for the support. It turns out that the tumor markers were showing something. The cancer seems to have returned to my wife's stomach. We have a appointment scheduled for Wednesday to see what to do next. I'm sure a lot of you have been in this same situation. Any tips will be appreciated. I guess hope and prayer.

soul-mate

FrankDiamond said:

Scans not good

Thanks so much, everybody, for the support. It turns out that the tumor markers were showing something. The cancer seems to have returned to my wife's stomach. We have a appointment scheduled for Wednesday to see what to do next. I'm sure a lot of you have been in this same situation. Any tips will be appreciated. I guess hope and prayer.

Stay positive

l'm in the very similar scenario and I can only wish for a positve approach ahead. I lke you have a 1000 questions. I found Mayo Clinic has very good info on ca125 and they emphasise not to rely on that alone because it leads to alot of extra treatments for nothing. Check it out and make your decision based on bona fide institutions. Feel free to use csn email and share some of our similar concerns. I wish you the best for Wed. and the journey ahead.My wife was diagnosed Aug.2013 with stage ivb advanced recurrent endometrial cancer with metastases to most bones. She has a compressed fracture to spine no feeling in mid section. We like you are looking at all resources available. She has such a positive approach to this journey knowing they can only slow the cancer and it will never be cured. As a full time caregiver it's hard to see someone who was golfing with me 9 months ago to be in such need for day to day activity. We are both 61yrs. young and started grade 1 together, just celebrated 42years. Hence I thought soulmate was appropriate. I'm hoping & praying like you for some positive outcome.  bye for now...

soul-mate

FrankDiamond

HellieC said:

There are other hormonal options

Hi.  Firstly, I'm sorry to hear about your wife.  But there are several factors which are working in her favour.  Firstly, that it was a good long time between her original diagnosis and treatment and the first recurrence, which is seen as a positive factor in clinical terms.  Secondly, her tumours are hormone receptive and she has had a response to the Arimidex.  Although it is primarily used in breast cancer, many oncologists are now starting to use that class of drug (aromatase inhibitors) for uterine cancer.   At the moment, the rise in CA 125 hasn't gone outside the reference range, although I know that any change upwards is a concern.  The main issue with hormone therapy is that it does tend to work for a limited period of time (although this can be years rather than months).  But the good news is that, having responded to one type of hormone, the odds are favourable that your wife may respond to a different one.  That opens up the possibilities of other aromatase inhibitors such as Letrozole, or some other kind of oestrogen blockade, such as Tamoxifen.  There are also progesterone hormones such as Megace.  So please take heart - there are other options out there if necessary, but hopefully, they are not needed yet and the rise in CA 125 is just a normal fluctuation.
With kindest wishes
Helen

Thanks for the info

Helen,

We saw the onc yesterday and we're going to try Megace. He was inclined to go to chemo since she responded so well last time but I mentioned that maybe we should at least give one more hormone inhibitor a chance. Thanks so much for your valuable feedback. Her tumors are in her abdomen, not in her stomach as  I originally said. Big difference clinically. Thanks again.

Frank

 

 

HellieC

FrankDiamond said:

Thanks for the info

Helen,

We saw the onc yesterday and we're going to try Megace. He was inclined to go to chemo since she responded so well last time but I mentioned that maybe we should at least give one more hormone inhibitor a chance. Thanks so much for your valuable feedback. Her tumors are in her abdomen, not in her stomach as  I originally said. Big difference clinically. Thanks again.

Frank

 

 

Same road

Hi Frank

I'm going down the same road - I just posted on your other thread that I am being switched to a second hormone inhibitor, Provera, which is similar to Megace as my MRI scan last week showed progression in the pelvis.  I think trying hormones before chemo is the best option as it is less toxic to the body and more tolerable.  Chemo is in the wings for me, too, should this not work.  I am also investigating Cyberknife radiotherapy, which is more targeted than standard radiotherapy.  Not sure if will be an option, but we're getting an opinion on it.

Kindest wishes
Helen