It's back...UPSC

Maggie_mac

Good evening ladies,

3 years ago [11/11] I was diagnosed with Stage VI b UPSC.  After surgery I went through 6 rounds of carbo/taxol.  That held me for 9 - 10 months with the help of megestrol.  My CA125 then spiked up to 365.  I returned to the same chemo cocktail for another 6 rounds and then started on tamoxifen.  After Christmas of 2013 my CA125 went from 30 to 72 to 122 in about 3 weeks.  I went back to the carbo/taxol cocktail for another 6 rounds.  That's a total of 3 rounds of 6 sessions of carbo/taxol.  When I finished that round in early May, I started on letrozole.  My oncologist said it appeared I was platnum resistant.

I am now looking at the last 6 months in my rear-view mirror.  As of yesterday, my CA125 is back to 74.  I realize some of you have never had a CA125 below 100 and others have never been above 50.  All things being relative, my numbers are not good.  I will see my oncologist next Wednesday.  He has already mentioned Doxil, but I truly don't know what is best. 

I guess what I am asking you to do is to say a prayer for me to help me meke the right decision about further therapy and tell me about what you have been through.

Merry Christmas, 

Maggie_mac 

   

NoTimeForCancer

Maggie mac, while I cannot

Maggie mac, while I cannot pass along experiences with a recurrence and that treatment, but I certainly will pray for you.  May God give you the strength you need to go forward and make the decisions that are best for you.  May He hold you in his loving hands at this moment in your life, and may He grant you peace.

AWK

Keeping you in my prayers

Maggie Mac 

I too am platinum resistent.  I was stage IIIC at diagnosis, second opinion has me at stage IVa.  I was diagnosed in Feb 2013 and after chemo, radiation, brachytherapy five tumors were found at my first three month checkup.  I have gone through Doxil (three rounds) and it wasn't as bad as the carbo/taxol.  Much easier, sloughy feet and some neuropathy but I actually continued to work full time.  In my case, I resisted the Doxil too and am now being treated with Avastin while looking for other therapies.  I am currently considered stable.  if you have any questions please feel free to reach out.  There is also a clinical trial out there for cabozantinib that your doctors might check into.  It is very promising, had good results and is in the second phase.  I didn't qualify because of a tumor on my heart but did a lot of research on it.  

My heart goes out to you.  My journey hasn't been as long as yours but I can relate to the situation.  Sending prayers and wishes for good guidance and healthcare for you.  You can do this in your own way. Hugs.

Ann55

doxil

I was also diagnosed with upsc in April 2013 stage 3C and after the taxol/carbo,ext.radiation and internal radiation the CT revealed mets.I did receive doxil and although I did have blistering of my feet I finally got a remission so for me the doxil was certainly worth the side effects.I am due my 3mo. check up Dec.17 but no matter the results I have certainly enjoyed this break from treatment.I've felt free !s a bird for 3 months. Good luck with your treatment doxil is the only thing so far that worked for me.

pinky104

Maggie_mac

I said a prayer for you and I hope whatever decision you make is the right one for you.  You and I have talked before.  I am 4 years and almost 7 mos. out from my surgery for IVb UPSC.  I have a pea-sized mass that is being monitored, and I go back Monday to see if it's big enough to remove now.  It was found in late May and I had a CT in Sept. that showed it had grown very slightly.  It's in my paracolic gutter, and my gyn/onc asked for me to wait to let it get big enough so he could find it when he goes in there to remove it.  My CA-125 when it was found was the lowest I've known it to be, 6.3, and in Sept. it was 6.4.  I've had a third CT scan and more labs including the CA-125 in the last few weeks. When it was first found, I was told by my my gyn/onc that he didn't know what it was.  His nurse practitioner said it could be a fluid collection.  I hope it's gone away but I'm afraid I won't be that lucky.  Basically, I feel fine.  I have some aches and pains on occasion in my abdomen, but I don't think any of them originate from that area.  My only treatment was surgery and 6 rounds of chemo and taxol.  Fortunately, I wasn't platinum resistant like you are.  It sounds like you're fighting a valiant battle.  Keep plugging along.  I hope you win the fight! 

flyerette65

pinky104 said:

Maggie_mac

I said a prayer for you and I hope whatever decision you make is the right one for you.  You and I have talked before.  I am 4 years and almost 7 mos. out from my surgery for IVb UPSC.  I have a pea-sized mass that is being monitored, and I go back Monday to see if it's big enough to remove now.  It was found in late May and I had a CT in Sept. that showed it had grown very slightly.  It's in my paracolic gutter, and my gyn/onc asked for me to wait to let it get big enough so he could find it when he goes in there to remove it.  My CA-125 when it was found was the lowest I've known it to be, 6.3, and in Sept. it was 6.4.  I've had a third CT scan and more labs including the CA-125 in the last few weeks. When it was first found, I was told by my my gyn/onc that he didn't know what it was.  His nurse practitioner said it could be a fluid collection.  I hope it's gone away but I'm afraid I won't be that lucky.  Basically, I feel fine.  I have some aches and pains on occasion in my abdomen, but I don't think any of them originate from that area.  My only treatment was surgery and 6 rounds of chemo and taxol.  Fortunately, I wasn't platinum resistant like you are.  It sounds like you're fighting a valiant battle.  Keep plugging along.  I hope you win the fight! 

UPSC

I am praying for all of you. We need all the prayers we can get! Has anyone had any bladder/kidney problems? I know Kaleena has as she is on the bladder cancer discussions. Last Monday I experienced very heavy "bright red" bleeding in my feminine area. It was as if I was having a very heavy period, complete with clots.  I called my oncologist and they told me to come in.  The nurse told me I was bleeding b/c of my radiation treatments.  I said "you're pretty funny b/c I declined to have radiation.  I know it's in the chart because I saw the notation, patient declined radiation so you obviously didn't even read my chart".  Long story short, the bleeding was from the bladder/kidneys.  I gave them a urine specimen and it didn't show any signs of a UTI but the specimen itself was gross with blood/clots.  I had a CT scan today and am having a cystoscopy under anesthesia on Wednesday.  They told me today that I am at a higher risk for bladder cancer because of chemo treatments.  I may just completely lose it if I have bladder cancer.  I have a 94 year old mother who lives with me, who is terminally ill with metatastic lobular carcinoma from her breast cancer in 2001.  My husband of nearly 2 years and I legally separated b/c "I was not making him happy", in the past 6 weeks I've had a thyroid storm, what had been diagnosed as sciatica  which put me in bed for a couple of days (maybe it was a kidney stone), and now this.  Of course, you're always worried about a recurrence whenever you have unusual pain but the bleeding really unnerved me.  Besides all of the above, my youngest daughter had a benign brain tumor removed in 2008 and has had many problems ever since. Last month she had cellulitis in her head and a year ago she almost died from bacterial menigitis after she had a Baja hearing device implanted into her skull bone.  I was diagnosed with USPC in 2011 and did the chemo, neulasta, got pneumonia 3 times during treatment and it took awhile to recover.  For about the past 4-6 months I've been feeling nauseaous all the time, had many flare ups with the "sciatica", terrible leg pains that wake me up at night (Not charleyhorses or RLS either) and since I saw my oncologist 3 weeks ago, I've lost 10 pounds without even trying.  OK I'm having a bit of a pity party this evening.  I'm sorry.  Usually I'm pretty positive but I've been kicked extra hard by life in the past year and this doesn't even cover everything that happened.  I need a margarita (or two)!

NoTimeForCancer

flyerette65 said:

UPSC

I am praying for all of you. We need all the prayers we can get! Has anyone had any bladder/kidney problems? I know Kaleena has as she is on the bladder cancer discussions. Last Monday I experienced very heavy "bright red" bleeding in my feminine area. It was as if I was having a very heavy period, complete with clots.  I called my oncologist and they told me to come in.  The nurse told me I was bleeding b/c of my radiation treatments.  I said "you're pretty funny b/c I declined to have radiation.  I know it's in the chart because I saw the notation, patient declined radiation so you obviously didn't even read my chart".  Long story short, the bleeding was from the bladder/kidneys.  I gave them a urine specimen and it didn't show any signs of a UTI but the specimen itself was gross with blood/clots.  I had a CT scan today and am having a cystoscopy under anesthesia on Wednesday.  They told me today that I am at a higher risk for bladder cancer because of chemo treatments.  I may just completely lose it if I have bladder cancer.  I have a 94 year old mother who lives with me, who is terminally ill with metatastic lobular carcinoma from her breast cancer in 2001.  My husband of nearly 2 years and I legally separated b/c "I was not making him happy", in the past 6 weeks I've had a thyroid storm, what had been diagnosed as sciatica  which put me in bed for a couple of days (maybe it was a kidney stone), and now this.  Of course, you're always worried about a recurrence whenever you have unusual pain but the bleeding really unnerved me.  Besides all of the above, my youngest daughter had a benign brain tumor removed in 2008 and has had many problems ever since. Last month she had cellulitis in her head and a year ago she almost died from bacterial menigitis after she had a Baja hearing device implanted into her skull bone.  I was diagnosed with USPC in 2011 and did the chemo, neulasta, got pneumonia 3 times during treatment and it took awhile to recover.  For about the past 4-6 months I've been feeling nauseaous all the time, had many flare ups with the "sciatica", terrible leg pains that wake me up at night (Not charleyhorses or RLS either) and since I saw my oncologist 3 weeks ago, I've lost 10 pounds without even trying.  OK I'm having a bit of a pity party this evening.  I'm sorry.  Usually I'm pretty positive but I've been kicked extra hard by life in the past year and this doesn't even cover everything that happened.  I need a margarita (or two)!

flyerette, I think there are

flyerette, I think there are GOOD nurses and BAD nurses, and I am betting all of us have run in to both either with our own treatment or when we are helping someone we love.  Is it possible to see a different gynecological oncologist?  Bleeding is NOT a good sign of anything and you need someone who wants to help.  

I have also seen Kaleena has had her share of problems with her bladder after everything she has been through.  

Politely demand some answers.

pinky104

flyerette65 said:

UPSC

I am praying for all of you. We need all the prayers we can get! Has anyone had any bladder/kidney problems? I know Kaleena has as she is on the bladder cancer discussions. Last Monday I experienced very heavy "bright red" bleeding in my feminine area. It was as if I was having a very heavy period, complete with clots.  I called my oncologist and they told me to come in.  The nurse told me I was bleeding b/c of my radiation treatments.  I said "you're pretty funny b/c I declined to have radiation.  I know it's in the chart because I saw the notation, patient declined radiation so you obviously didn't even read my chart".  Long story short, the bleeding was from the bladder/kidneys.  I gave them a urine specimen and it didn't show any signs of a UTI but the specimen itself was gross with blood/clots.  I had a CT scan today and am having a cystoscopy under anesthesia on Wednesday.  They told me today that I am at a higher risk for bladder cancer because of chemo treatments.  I may just completely lose it if I have bladder cancer.  I have a 94 year old mother who lives with me, who is terminally ill with metatastic lobular carcinoma from her breast cancer in 2001.  My husband of nearly 2 years and I legally separated b/c "I was not making him happy", in the past 6 weeks I've had a thyroid storm, what had been diagnosed as sciatica  which put me in bed for a couple of days (maybe it was a kidney stone), and now this.  Of course, you're always worried about a recurrence whenever you have unusual pain but the bleeding really unnerved me.  Besides all of the above, my youngest daughter had a benign brain tumor removed in 2008 and has had many problems ever since. Last month she had cellulitis in her head and a year ago she almost died from bacterial menigitis after she had a Baja hearing device implanted into her skull bone.  I was diagnosed with USPC in 2011 and did the chemo, neulasta, got pneumonia 3 times during treatment and it took awhile to recover.  For about the past 4-6 months I've been feeling nauseaous all the time, had many flare ups with the "sciatica", terrible leg pains that wake me up at night (Not charleyhorses or RLS either) and since I saw my oncologist 3 weeks ago, I've lost 10 pounds without even trying.  OK I'm having a bit of a pity party this evening.  I'm sorry.  Usually I'm pretty positive but I've been kicked extra hard by life in the past year and this doesn't even cover everything that happened.  I need a margarita (or two)!

flyerette 65

You've definitely had more than your share of bad news.  If your leg pains are like cramps, Leg pains can be caused by dehydration.  I've  read that deficiencies in calcium, magnesium, or potassium can cause them.  And then, there's also peripheral neuropathy from chemo to consider, too.  Out of curiosity, I just looked up the side effects of Neulasta, and the most common one is pains in bones and muscles.  I'm not sure how long they last after taking the drug.  I refused it, myself, as it had a risk of heart attack, and my brother had just died the previous week from one.  He was only 57.

Of course, you think of cancer first with weight loss, but have you considered thyroid disease?  I had a hyperactive thyroid at one point and I was losing weight fast.  I was treated with radioactive iodine, and that killed off too much of my thyroid gland.  I became hypothyroid, and that was diagnosed when I  developed leg pains.  I also have several back problems, including sciatica.  I find that if I bend my knee and rotate my leg to the far right for the right leg or the far left for the left leg, I have significantly less pain.  I lay in bed and bend my leg so that the outer side of my leg touches the bed.

Another possibility to consider is celiac disease.  That can cause weight loss.  I'm not sure about the nauseousness, but I know it can cause abdominal pain.

Don't have the margarita--it can make you dehydrated and you'll have more leg pains!    

Ro10

Maggie mac

you do remain in my prayers.  I have had UPSC since 1/09.  I have been through chemo three times and just had SBRT for a third recurrence.  I am one of those who have never been NED.  I also have had very high CA-125's.  The highest was 3200.   My doctor has always said it is just a number.  He waits until changes occur in the CAT scan.

I have never had Doxil, but it has been mentioned as a possible future drug for me.  I am not looking forward to going on it.   I have been able to stay on the Taxol/ platinum combination.    Right now I am on Aromasin.  Good luck in making your decision about further treatment.  What ever you decide will be the right treatment for you.  In peace and caring.

flyerette65

Ro10 said:

Maggie mac

you do remain in my prayers.  I have had UPSC since 1/09.  I have been through chemo three times and just had SBRT for a third recurrence.  I am one of those who have never been NED.  I also have had very high CA-125's.  The highest was 3200.   My doctor has always said it is just a number.  He waits until changes occur in the CAT scan.

I have never had Doxil, but it has been mentioned as a possible future drug for me.  I am not looking forward to going on it.   I have been able to stay on the Taxol/ platinum combination.    Right now I am on Aromasin.  Good luck in making your decision about further treatment.  What ever you decide will be the right treatment for you.  In peace and caring.

cystoscopy

Thank you all for your input.  I do have hypothyroidism and I take 150 mcg daily.  I did have severe leg pain while taking the Neulasta but this has just started up recently in both legs. I also take Potassium 10 mg daily, Magnesium and calcium, the leg pain seems to have subsided somewhat. I've been going to a new physical therapist and she says I have sciatica but other problems as well, namely, my pelvic floor is weak so Thursday I'm seeing a physical therapist who specializes in pelvic floor disorder.The Cystoscopy showed a thickening of the back wall of the bladder. The urologist said he doesn't know why it's so thick.  Biopsies were benign, so that's a good sign, but still I am concerned about the bright red copious bleeding and the thickening of the bladder wall.  I will see the urologist for further discussion next week.  Today I spent the entire day in the E.R. with mom.  She had a TIA Friday and she didn't want to go to the hospital.  Today she was having great difficulty walking and her visiting R.N. said she needs to be checked out.  They did a CT scan of her brain, chest and hip xrays, blood work and urinalysis and then sent her home.  She could not negotiate the 12 steps from the basement to the first floor so a medical transport had to bring her home.  She's very weak and no one seems to know why.  I'm thinking about getting a second opinion if what the urologist tells me doesn't sound right to me.  Also, my oncologist hasn't done a CA125 for two years.  They said since I'm one of the few women who's CA125 didn't increase over 100 when I had active cancer that they don't see a need to do them.

pinky104

flyerette65 said:

cystoscopy

Thank you all for your input.  I do have hypothyroidism and I take 150 mcg daily.  I did have severe leg pain while taking the Neulasta but this has just started up recently in both legs. I also take Potassium 10 mg daily, Magnesium and calcium, the leg pain seems to have subsided somewhat. I've been going to a new physical therapist and she says I have sciatica but other problems as well, namely, my pelvic floor is weak so Thursday I'm seeing a physical therapist who specializes in pelvic floor disorder.The Cystoscopy showed a thickening of the back wall of the bladder. The urologist said he doesn't know why it's so thick.  Biopsies were benign, so that's a good sign, but still I am concerned about the bright red copious bleeding and the thickening of the bladder wall.  I will see the urologist for further discussion next week.  Today I spent the entire day in the E.R. with mom.  She had a TIA Friday and she didn't want to go to the hospital.  Today she was having great difficulty walking and her visiting R.N. said she needs to be checked out.  They did a CT scan of her brain, chest and hip xrays, blood work and urinalysis and then sent her home.  She could not negotiate the 12 steps from the basement to the first floor so a medical transport had to bring her home.  She's very weak and no one seems to know why.  I'm thinking about getting a second opinion if what the urologist tells me doesn't sound right to me.  Also, my oncologist hasn't done a CA125 for two years.  They said since I'm one of the few women who's CA125 didn't increase over 100 when I had active cancer that they don't see a need to do them.

CA-125

Interesting.  My CA-125 was 94 when I had stage IVb UPSC, and my doctors still do my tests.  I'm running in the 6's and 7's in the last few months.  

Your mother's problem sounds exactly like what my mother had when she had a subdural hematoma.  She had a TIA about a month before she was diagnosed.  One day, she started losing her balance when she was walking.  A CT scan showed the hematoma, which had been there a while.  She had to have emergency surgery where a hole was drilled into her skull to remove the pressure.  I had to drive to another city in a two foot snowstorm to sign the paperwork for her to have the surgery.  The hospital wouldn't let me sign it the night before so I wouldn't have to drive in the predicted storm.

The fact that your mother already had the CT scan probably rules out this diagnosis, as long as somebody really looked at it closely.  Has your mother hit her head anywhere recently, like while getting into a car, or has she fallen?  A stroke would be another possibility but this probably would have shown up in the CT scan, too.