Uterine Papillary Serous Carcinoma (UPSC): any others here???

pjba11

marge
So glad to hear from you. Not such good news, but let's hope you can get better real soon. It might not hurt to run this past you Dr so next chemo might react different. (I am sure you thought of that.) I will extend an open invitation to all of you wonderful women: We should have a reunion after we are all well again. I have made up an annual holiday at our farm. We have a "Gathering" on the third Sat in Sept each year. This year will be our 14th 'Gathering'. We have a big potluck around our campfire pit, all the people bring their best recipes to taste and exchange. Then we go on a hayride and 'gather' 12 acres pumpkins, gourds, squash, Indian corn, popcorn, watermelon, cantalope, and anything else that is unusual that we can grow so that their kids can 'gather' it. When everyone is done 'gathering' we bring the tractors and wagons back to our yard and have the kids choose one item that is their favorite pick of the day and then they march in the 'pumpkin parade'. (most of the parents pick more than the kids.. many decorate their yards, homes, and church.) We also have a 12 car train for the kids to ride in. Some of the kids have been coming so long that they are way to old to ride in the train...but they just can't help themselves and hop in anyway!! When the day is over some of the cars are so full of produce that when they leave they are sitting so low that they barely clear the road!! I decorate the yard for days and even have an 'pottyhouse' that looks like a pumpkin. I will leave an open invitation to all of my UPSC sisters and families to come next year and all the years after that for our NED reunions!!! It is snowing here, another foot has fallen and we are sick of it!!! My best to all of you. Peggy

Teresa 61

pjba11 said:

marge
So glad to hear from you. Not such good news, but let's hope you can get better real soon. It might not hurt to run this past you Dr so next chemo might react different. (I am sure you thought of that.) I will extend an open invitation to all of you wonderful women: We should have a reunion after we are all well again. I have made up an annual holiday at our farm. We have a "Gathering" on the third Sat in Sept each year. This year will be our 14th 'Gathering'. We have a big potluck around our campfire pit, all the people bring their best recipes to taste and exchange. Then we go on a hayride and 'gather' 12 acres pumpkins, gourds, squash, Indian corn, popcorn, watermelon, cantalope, and anything else that is unusual that we can grow so that their kids can 'gather' it. When everyone is done 'gathering' we bring the tractors and wagons back to our yard and have the kids choose one item that is their favorite pick of the day and then they march in the 'pumpkin parade'. (most of the parents pick more than the kids.. many decorate their yards, homes, and church.) We also have a 12 car train for the kids to ride in. Some of the kids have been coming so long that they are way to old to ride in the train...but they just can't help themselves and hop in anyway!! When the day is over some of the cars are so full of produce that when they leave they are sitting so low that they barely clear the road!! I decorate the yard for days and even have an 'pottyhouse' that looks like a pumpkin. I will leave an open invitation to all of my UPSC sisters and families to come next year and all the years after that for our NED reunions!!! It is snowing here, another foot has fallen and we are sick of it!!! My best to all of you. Peggy

Thank You Linda!
Your words of support meant alot to me. It reminded me also that I'am not alone in this and I thank God for leading me to this site and you wonderful women. Feeling a little yuck today and my legs are starting to ache.But because you and Marge have mentioned having these side effects, I believe I'am able to handle them better.Really like your new picture Linda! Will eventualy try to get mine in. My son brought over homemade stuffed bellpeppers he made for me because he knows I love them.Hopefuly I have an appetite for them tommorow,I just am not hungry.....EVER
Marge, September sounds wonderful on your farm.Sounds like you all have a wonderful time.
Teresa

lindaprocopio

Teresa 61 said:

Thank You Linda!
Your words of support meant alot to me. It reminded me also that I'am not alone in this and I thank God for leading me to this site and you wonderful women. Feeling a little yuck today and my legs are starting to ache.But because you and Marge have mentioned having these side effects, I believe I'am able to handle them better.Really like your new picture Linda! Will eventualy try to get mine in. My son brought over homemade stuffed bellpeppers he made for me because he knows I love them.Hopefuly I have an appetite for them tommorow,I just am not hungry.....EVER
Marge, September sounds wonderful on your farm.Sounds like you all have a wonderful time.
Teresa

New UPSC sister is posting under 'Recurrent Endometrial Cancer'
Someone just posted under the Discussion Thread 'Recurrent Endometrial Cancer' that has UPSC and is currently NED. (Under this same heading 'Gynecologic Cancer Other than Ovarian'). She asked me to email her, but I have no idea how to get her email address from her profile and am not even sure that is accessible to us. If you know how to get her email address from her profile, please let me know what it is, as she says she is not a 'discussion board' type person. There's not much more that I can say to her than what I posted, but she may be waiting for an email from me and never see my post. That's an interesting thread for any of you to read through anyway, as someone else there thinks they may have had UPSC originally but doesn't yet know the cell type of her initial cancer. If nothing else, it will steel your resolve to push through all of your chemo and rads. Re-occurance seems to happen to those who are not aggressive enough from the get-go. That's not any of us here; we are ALL going for the whole ball of wax and we will get each other through this, and get NED, and stay cancer-free!!

PS: feeling soooooo much better yesterday and today! Aches are gone, appetite back, and I worked a 12-hour day yesterday and Sunday with no naps, touching base with my staff and clients now that everyone should be back from the holidays. My only bad news: I had a Maryland Bridge (dental work) fall off this morning when I bit into my calcium chew! I made a dentist appointment for tomorrow and was told by the dentist to get an opinion from my oncologist today about doing the repair when my platelets are low. At minimum I'm hoping to get a flouride treatment to offset any possible chemo damage to my teeth. PEGGY: did your treatments compromise your teeth in any way?

pjba11

dentist
So sorry Linda. Teeth are a pain when in chemo. Many dentists are very hesitant. I had one tooth totally fall apart the day after my 5th chemo. My regular dentist was out of town. The dentist that agreed to do the work was fine with chemo. He filled it and I have not had any trouble with it. But many dentists feel it is to invasive to work on us when we are so open to infection. This is where the nuelasta saved me. My counts were never bad. I was told that is why I had neulasta from the beginning to keep me from letting the chemo knock my immune system down. Hope this can be resolved quickly for you. How are the rest of you doing. We have a quiet board this month!!

shortmarge

pjba11 said:

dentist
So sorry Linda. Teeth are a pain when in chemo. Many dentists are very hesitant. I had one tooth totally fall apart the day after my 5th chemo. My regular dentist was out of town. The dentist that agreed to do the work was fine with chemo. He filled it and I have not had any trouble with it. But many dentists feel it is to invasive to work on us when we are so open to infection. This is where the nuelasta saved me. My counts were never bad. I was told that is why I had neulasta from the beginning to keep me from letting the chemo knock my immune system down. Hope this can be resolved quickly for you. How are the rest of you doing. We have a quiet board this month!!

DECISION MAKING TIME
Went to my Oncol yesterday because last Tuesday and Saturday I had some funky vision things going on. On Tuesday it was my right eye on Saturday it was my left eye, it was like I was looking through a crystal. Called the doc on Saturday after it happened and she told me to come in this week. She said that is usually a sign of a migrane coming on but I did not get a headache, but she said it isn't a side effect of the chemo. She is going to send me to a neurologist. Also my balance has been off since last chemo so she is going to send me to an ENT to have my ears check, still she says it is not side effect of the chemo (funny how this happened after my third chemo treatment). But the tingling in my hands and feet are a side effect so the decision making needs to been done. She feels that three chemo rounds is good enough for her and that if I want I can stop. She said that there are no studies saying that six are better than three. If I decide to go ahead with the chemo she is going to lower the dosage because of the tingling in my hands and feet. I'm thinking I will go for #4 and call it quits.

I read this yesterday and it really has me thinking about finishing all six:

Treatment boosts survival from uterine cancer

A state-of-the-art treatment program developed at the School of Medicine increases survival from the aggressive uterine papillary serous carcinoma (UPSC) and spares some patients the need for added therapy.

The results are presented in the lead article of September's Gynecologic Oncology. The research team -- led by senior author Dr. Peter E. Schwartz, the John Slade Ely Professor and vice chair of the Department of Obstetrics, Gynecology & Reproductive Sciences (Ob/Gyn) -- determined that a combination of platinum-based chemotherapy and vaginal radiation was the most effective treatment for the disease.

"Our study defines a standard of care for this aggressive and growing form of uterine cancer," says Schwartz, who is also assistant chief of obstetrics and gynecology at Yale-New Haven Hospital and director of the Ovarian Cancer Research Program in the Yale Cancer Center. The procedure more accurately determines the complete stage and appropriate treatment, and reduces the recurrence of the cancer, he explains.

The incidence of UPSC has increased since it was first identified in 1981. About 160 to 170 new cases per year are seen at Yale. UPSC is found in higher rates in African-American women than in white women. The disease microscopically looks like ovarian cancer and spreads just as rapidly.

"Until now, there has been no consistent management of the disease," says first author Dr. Michael G. Kelly, fellow and instructor in Ob/Gyn. "With this method, we've been able to see who needs additional treatment after surgery and who does not. By reducing recurrence, we are helping to increase the survival rates of women with this form of uterine cancer. Once the disease recurs, virtually no one is cured."

The team reviewed 74 stage-1 patients with UPSC who underwent complete surgical staging, or hysterectomy with removal of pelvic and para-aortic lymph nodes and fat pads, at Yale between 1987 and 2004. Cancer recurred in 43% of early-stage patients who did not receive chemotherapy, while in the 20% of patients who received platinum-based chemotherapy, there were no recurrences. About 14 patients were spared additional radiation treatment.

I guess my question here is how much chemo did they have?

Urrrrrrrrrrr, dang CANCER!

lindaprocopio

(((Marge))))) Scary decision. Here's what I could find:
Aw, Marge, with every side effect I get I worry that I will find myself in your shoes, refused more chemo or asked to choose between a long-lasting side effect and having my next round of chemo. Please remember that Peggy didn't finish her full 6 rounds and she's still NED after 2 years. And that Dianna is scheduled for 8 rounds, when you and I are scheduled for 6: This is NOT an exacting science! They are making it up as they go along. I've always thought that my onc was guessing at how much chemo I could tolerate when he scheduled 6 rounds, and would take me as far as my body allowed, even beyond the 6 if I was still okay. 3 may be as good as 6, and I'll bet 4 will be. Will you still do the external pelvic radiation? Maybe you could come back to the final rounds of chemo after that, in the 'sandwich' that Peggy had. That's still being kicked around for me, and I know the decision will be made based on how hard my body is taking the chemo.

I looked for the Yale study, trying to get an answer for your question of 'how many rounds'. I need to also go through the things I printed out back before I first met with my chemo onc. I printed out this same Yale Study, ready to advocate for an aggressive chemo schedule, and it may have the treament schedule on it. But I think Peggy is right that the Yale study is the treatment regime Peggy had. Anyway, online, here's what else I could find on this. (I was planning to look for this article anyway, for the woman with UPSC on the 'recurrent endometrial cancer' thread who opted NOT to have any chemo):

Division of Gynecology Oncology, Department of Obstetrics and Gynecology and Pathology, Yale University School of Medicine, New Haven, CT 06520-8063, USA. m.kelly@yale.edu

OBJECTIVE: Uterine papillary serous carcinoma (UPSC) is an aggressive form of endometrial cancer characterized by a high recurrence rate and a poor prognosis. Prior studies evaluating treatment of UPSC have been limited by small numbers of patients and inclusion of partially staged patients. The purpose of this study was to evaluate the efficacy of adjuvant platinum-based chemotherapy and vaginal cuff radiation in a large cohort of surgical stage I UPSC patients. METHODS: We retrospectively reviewed 74 stage I patients with UPSC who underwent complete surgical staging at our institution between 1987 and 2004. RESULTS: Stage IA patients were divided into two groups: patients with no cancer in the hysterectomy specimen (defined as no residual uterine disease) and patients with cancer in the hysterectomy specimen (defined as residual uterine disease). Stage IA patients with no residual uterine disease had no recurrences, regardless of adjuvant therapy (n = 12). Stage IA patients with residual uterine disease who were treated with platinum-based chemotherapy had no recurrences (n = 7). However, 6 of 14 (43%) stage IA patients with residual uterine disease who did not receive chemotherapy recurred. The 15 patients with stage IB UPSC who received platinum-based chemotherapy had no recurrences but 10 of the 13 (77%) stage IB patients who did not receive chemotherapy recurred. One of the 7 patients with stage IC UPSC who received platinum-based chemotherapy recurred and 4 of the 5 (80%) stage IC patients who did not receive chemotherapy recurred. Overall platinum-based chemotherapy was associated with improved disease-free survival (P < 0.01) and improved overall survival (P < 0.05) in patients with stage I UPSC. None of the 43 patients who received radiation to the vaginal cuff recurred locally, but 6 of the 31 (19%) patients who were not treated with vaginal radiation recurred at the cuff. CONCLUSIONS: Platinum-based chemotherapy improves the disease-free and overall survival of patients with stage I UPSC and vaginal cuff radiation provides local control. Stage IA UPSC patients with no residual uterine disease can be observed but concomitant platinum-based chemotherapy and vaginal cuff radiation (referred to as chemoradiation) should be offered to all other stage I UPSC patients.

pjba11

amount of chemo... vs sessions
This is such a mess for us to try to muddle through..........where are the answers??? Another thing to consider... it may not be how many sessions of chemo we have, but how strong the dosage of the drugs in the chemo. Do you know what you are getting? God bless and guide your search.

pjba11

maybe same trial
So sorry for all of this for you. If you go back to my previous post on the treatments I received it may be the same Yale trial that they are talking about in your article. My gyn/oncl. took part in this study and he was from Yale. Please read my post of Nov 10. My prayers to you. It is a tough battle this chemo. I had to quit at 5. Mind body and soul back to you. Fight this!!!

lindaprocopio

Good question, Peggy! MARGE: stuff to think about...
I looked all through my paperwork trying to find out the dosage of the chemo I'm getting, so that Marge can compare it with what they are giving her. I couldn't find it anywhere, but my husband says that he checked my IV bag last time I had chemo, and that I was getting 300mg of Paciltaxel. He isn't 100% positive, but he thinks he remembers that the smaller bag of Carboplatin was 50mg. He was comparing what I was getting at that moment with what my chemo-buddy (with breast cancer) who comes EVERY Monday was getting at the same time, and I was getting 3 times as much Paciltaxel that day (although she may be getting other drugs on her other 2 Mondays we aren't together.)

So it sounds like Marge (& all of us) have some other options if our body is having trouble recovering from each chemo session. Perhaps we could take a SLIGHTLY longer break between chemo sessions, or perhaps we could have a smaller dosage each round and a more prolonged treatment schedule.

I want to add one one thing that I've considered in all this that I learned from the Ovarian Cancer Sisters on this Board. Ovarian cancer (OVC) is SOOOO recurrent that most of OVC patients treat it as a chronic condition, and accept re-occurance as a part of the disease. From what they are posting, they take chemo on-going, until their CA-125 drops to around 10 or lower and their CT-scan is NED. Then they are considered in remission and take a break from treatment and get on with their lives, with frequent CA-125 and CT-scan testing. If their CA-125 starts to rise or they lose their NED CT-scan status, they go back into chemo,...and so on. Soooo, knowing this, and knowing that UPSC at Stage III is considered every bit as re-occurrent as ovarian cancer, I tried to discuss this approach with my chemo onc as a possibility for me,..essentially 'saving' some of my body's strength for my first re-occurance by stopping chemo if my CA-125 came down to 10 and my CT-scan stayed NED. My oncologist cut that conversation off as soon as he saw where I was going with it, saying "We will NOT discuss re-occurance treatment as a factor in deciding your current treatment, except in our commitment to NO re-occurance. We are going all-out for a prognosis for you that does NOT include re-occurance." Re-reading the info that Marge posted, I can see why he feels it is so important that we shoot for a complete cure now; the prognosis after re-occurance of this cancer looks pretty grim. We cannot back off from our treatments if our body can tolerate the regime, certainly not in an effort to save some strength for the 2nd battle. We need to win the whole war in our first decisive battle.

Marge, I don't know if you are being asked to make a conscious decision, or whether your body is making that decision for you. I can't even imagine what I would do (or WILL do) when my time comes for this decision, and it would be sooooo tempting to take a break from treatment and feel good again. But please explore every option possible in your treatment, whether it be a lower dosage or a switch to external radiation, or a new 'chemo cocktail'. Your other new doctors may be able to quiet these scary new side effects (or concurrent conditions,..although I also think it's chemo-related!) and maybe let you continue with your treatments. If I can help with any internet research for you, or if you have any questions that I can carry to my chemo-onc on the 19th so that you get another opinion, please just ask. ((((Marge)))))

shortmarge

lindaprocopio said:

Good question, Peggy! MARGE: stuff to think about...
I looked all through my paperwork trying to find out the dosage of the chemo I'm getting, so that Marge can compare it with what they are giving her. I couldn't find it anywhere, but my husband says that he checked my IV bag last time I had chemo, and that I was getting 300mg of Paciltaxel. He isn't 100% positive, but he thinks he remembers that the smaller bag of Carboplatin was 50mg. He was comparing what I was getting at that moment with what my chemo-buddy (with breast cancer) who comes EVERY Monday was getting at the same time, and I was getting 3 times as much Paciltaxel that day (although she may be getting other drugs on her other 2 Mondays we aren't together.)

So it sounds like Marge (& all of us) have some other options if our body is having trouble recovering from each chemo session. Perhaps we could take a SLIGHTLY longer break between chemo sessions, or perhaps we could have a smaller dosage each round and a more prolonged treatment schedule.

I want to add one one thing that I've considered in all this that I learned from the Ovarian Cancer Sisters on this Board. Ovarian cancer (OVC) is SOOOO recurrent that most of OVC patients treat it as a chronic condition, and accept re-occurance as a part of the disease. From what they are posting, they take chemo on-going, until their CA-125 drops to around 10 or lower and their CT-scan is NED. Then they are considered in remission and take a break from treatment and get on with their lives, with frequent CA-125 and CT-scan testing. If their CA-125 starts to rise or they lose their NED CT-scan status, they go back into chemo,...and so on. Soooo, knowing this, and knowing that UPSC at Stage III is considered every bit as re-occurrent as ovarian cancer, I tried to discuss this approach with my chemo onc as a possibility for me,..essentially 'saving' some of my body's strength for my first re-occurance by stopping chemo if my CA-125 came down to 10 and my CT-scan stayed NED. My oncologist cut that conversation off as soon as he saw where I was going with it, saying "We will NOT discuss re-occurance treatment as a factor in deciding your current treatment, except in our commitment to NO re-occurance. We are going all-out for a prognosis for you that does NOT include re-occurance." Re-reading the info that Marge posted, I can see why he feels it is so important that we shoot for a complete cure now; the prognosis after re-occurance of this cancer looks pretty grim. We cannot back off from our treatments if our body can tolerate the regime, certainly not in an effort to save some strength for the 2nd battle. We need to win the whole war in our first decisive battle.

Marge, I don't know if you are being asked to make a conscious decision, or whether your body is making that decision for you. I can't even imagine what I would do (or WILL do) when my time comes for this decision, and it would be sooooo tempting to take a break from treatment and feel good again. But please explore every option possible in your treatment, whether it be a lower dosage or a switch to external radiation, or a new 'chemo cocktail'. Your other new doctors may be able to quiet these scary new side effects (or concurrent conditions,..although I also think it's chemo-related!) and maybe let you continue with your treatments. If I can help with any internet research for you, or if you have any questions that I can carry to my chemo-onc on the 19th so that you get another opinion, please just ask. ((((Marge)))))

I will not be having external radiation. I am Stage IIA. My UPSC was completely removed during my first biopsy in the doctors office (oncol was stunned) but they found the CCC that was slightly touching my cervix after surgery. There was a debate as to whether to have me as Stage IB or IIA. What I've been reading there is not much difference as far as prognosis. She said it's not like I am battling a tumor that's why she feels three is plenty. I'm not sure if I agree. I asked her about it being like ovarian cancer and she said no, ovarian is much worse, they may have the same names but ovarian is worse.

I'm going to meditate tonight and have a little chat with God.

Mind, Body and Soul.

Hugs

rainyjane10

Prayers and angels
I am a believer in prayers and angels my friend. I've been the recipient of both in the last year and I have seen miracles. I will send all my prayers your way and ask my angels to watch over you. i wish I could go through some of this for you. Please keep me posted on how you are doing. Thank you for helping me put my own crap in prespective. (((Giant Cyber Hug)))

lindaprocopio

You are right, Marge; my Stage IIIC is different than yours!
And, yes, Marge, please remember that the re-occurance rate for me at Stage III-c is really much higher than for your stage, and that I have no choice but to be as aggressive as my body will allow me to be. You have a great CA-125 and a NED CT-scan, and the women posting on that 'recurrent edometrial cancer' thread did not initially have ANY chemo, starting chemo only AFTER re-occurance. 6 rounds of chemo isn't any "Gold Standard"; there IS no gold standard of treatment yet for UPSC. They're making it up as they go along. I think they throw at us all they think our body can bear, and hope. One day, 3 rounds of chemo may BE the Gold Standard for UPSC treatment; and UPSC survivors may be spared the neuropathy and other long term side effects of having had too much chemo. I will pray that God guides your decision and that it will be the right one. Pray on this, and then have confidence in your decision. Once it's made, I promise that we won't say anything to second-guess you or make you have doubts. We will all support your decision and cheer you on. I hope that you will continue to post here with us, even if you are out of treatment, and join Peggy on the other side of this journey, as one who fought the battle and won and is living NED!

Teresa 61

lindaprocopio said:

You are right, Marge; my Stage IIIC is different than yours!
And, yes, Marge, please remember that the re-occurance rate for me at Stage III-c is really much higher than for your stage, and that I have no choice but to be as aggressive as my body will allow me to be. You have a great CA-125 and a NED CT-scan, and the women posting on that 'recurrent edometrial cancer' thread did not initially have ANY chemo, starting chemo only AFTER re-occurance. 6 rounds of chemo isn't any "Gold Standard"; there IS no gold standard of treatment yet for UPSC. They're making it up as they go along. I think they throw at us all they think our body can bear, and hope. One day, 3 rounds of chemo may BE the Gold Standard for UPSC treatment; and UPSC survivors may be spared the neuropathy and other long term side effects of having had too much chemo. I will pray that God guides your decision and that it will be the right one. Pray on this, and then have confidence in your decision. Once it's made, I promise that we won't say anything to second-guess you or make you have doubts. We will all support your decision and cheer you on. I hope that you will continue to post here with us, even if you are out of treatment, and join Peggy on the other side of this journey, as one who fought the battle and won and is living NED!

Marge , Kaleidoscope Side Effect!
Marge , on the 5th , 3 days after chemo I told my husband something was going on with my eyes, like shattered glass or an old fashion kaleidoscope. I did not get a migrain either. The effect lasted a couple of hours.Haven't had it since the one time, never had it before chemo .After reading your post I will call it another lousy chemo SIDE EFFECT!!!!
Teresa

deanna14

Teresa 61 said:

Marge , Kaleidoscope Side Effect!
Marge , on the 5th , 3 days after chemo I told my husband something was going on with my eyes, like shattered glass or an old fashion kaleidoscope. I did not get a migrain either. The effect lasted a couple of hours.Haven't had it since the one time, never had it before chemo .After reading your post I will call it another lousy chemo SIDE EFFECT!!!!
Teresa

Prayers to you Marge.
I will be praying for you and hoping that God will guide you to make the right decision for you. I will also be praying that your symptoms or side effects, whatever they may be, will resolve and that you will soon feel better. I mirror Linda's sentiments, you will have my support whatever your decision and I do hope that you will continue to post with us. This board continues to make me feel as if I am not alone in this fight.
My next onc appt. is on Friday, so I will find out when I will be starting the chemotherapy journey.
Make angels watch over us all!
Hugs,
Deanna

rainyjane10

lindaprocopio said:

Insurance preapproval slower than my chemo doctor!
Now, with my chemo scheduled for Monday at 9:15am, I get a call close to the end of the business day on a FRIDAY from the hospital, saying that my insurance needs 6 to 7 days to pre-certify my chemo costs, and would I rather WAIT until they get that Pre-Cert, or come in early and sign a paper saying I'll pay if the insurance doesn't??!!! What THE HECK is wrong with the insurance industry in this country???!! Haven't I got enough to worry about!? My husband is doing hurry-up phone calls to the hospital's billing department and trying to get an authorized person to actually come on the line at the insurance and rectify this. 45 minutes until close of business on a Friday!!! ARGH!!! More stress....

Grr insurance!!!
I know thatinsuarnce problems are more the norm than not but what a heartless business. Do they not understand when you are going through these things time is of the essence. You're right the one thing you don't need is the added stress. God we need something done with the health care system!!!

rainyjane10

lindaprocopio said:

We're signing the paper & I'm getting chemo Monday
It's not really the insurance company's fault; apparently the details of my chemo are still laying on the oncologist's desk, not yet sent over to the hospital's pre-authorization financial people. And without knowing the details, the insurance isn't going to Pre-Certify. So it's a matter of 'fast appointment / slow paper trail'. How much of a financial hit did you take with your cancer, Peggy, if I may ask? I already paid my crazy 'out of network' $10,500 deductible, and was hoping that would be the extent of my 2008 out-of-pocket hit. (In January, the deductible requirement kicks in again, but I am having my chemo 'in network' so my deductible will be $7,500 more for 2009.) I hate to agree to pay for my 1st chemo round. But I also am unwilling to wait a week to start chemo now that I have myself all mentally prepared for this.

On a more fun note, I made an appointment with a 'hair replacement' salon that specializes in cancer patients, and came back with a $250 wig and a couple really cute hats. I wasn't even going to get a wig, but then I thought there would be times when I won't want to look pitiful and may want my privacy. This hair really looks real. They thinned and styled it for me. I feel a little embarrassed to have fake hair on a stand in my bedroom now, but I do feel READY now for whatever's coming.

No surprise
Wow! After everything I went through with the hosital billing department and the doctors not filling out paper work like they should I'm not surprised at your hold up but I don't understand how the very people who know how important this insurance stuff is can be so lax and so indifferent. I wish I had known about this site a year ago when I was oing through all of this. At least I would have found solace in knowing I wasn't going through this crap alone. Keep strong!

shortmarge

deanna14 said:

Prayers to you Marge.
I will be praying for you and hoping that God will guide you to make the right decision for you. I will also be praying that your symptoms or side effects, whatever they may be, will resolve and that you will soon feel better. I mirror Linda's sentiments, you will have my support whatever your decision and I do hope that you will continue to post with us. This board continues to make me feel as if I am not alone in this fight.
My next onc appt. is on Friday, so I will find out when I will be starting the chemotherapy journey.
Make angels watch over us all!
Hugs,
Deanna

kaleidoscope
Teresa, That's exactly what I told the doctor that it looked like I was looking through a kaleidoscope. She gave me a funny look, guess she doesn't know what a kaleidoscope is.

Thank you for your support. I'm feeling that reality is catching up with me; til now it all seemed like this wasn't really happening. It's really (excuse my language) pissing me off!!!! I will be around on this board for a long time, supporting all of you. We will all get through this.

Mind, Body and Soul.

Hugs

pjba11

I will add a prayer too
Marge; MIND BODY AND SOUL

deanna14

pjba11 said:

I will add a prayer too
Marge; MIND BODY AND SOUL

Clinical Trial
I got the real scoop on the clinical trial today at my gyn/onc appt. Apparently there was a mix up which is a little unnerving. My doctors nurse practitioner is the one who discussed it with me. Evidently due to the UPSC, the staging on my surgery was done like ovarian cancer. When the nurse practitioner discussed it with me, she gave me the info on Avastin which is an ovca clinical trial. So, here is the endometrial ca trial GOG-0209 NCT00063999. Keep in mind that only 10% of endometrial ca is UPSC which is never mentioned in the information I read on this trial. What my doctor will prescribe outside of the trial is carbo/taxol every 21 days for 6 cycles. The clinical trial is randomized with carbo/taxol being 1 arm of the study. The second arm of the study is cisplatin, adriamycin and taxol given in 2 days rather than one, every 21 days for 7 cycles. A part of the study is to measure quality of life and toxity. Obviously 3 drugs are going to be more toxic than 2, right?
Anyway, the study coordinator is supposed to be contacting me and I will keep you posted as I have more info. I'm leaning toward not participating. If any of you have the time to take a look at this study, please share with me your thoughts. Also, if you have the opportunity to run it by your providers I would appreciate another point of view. If I don't want to delay treatment, then I need to make a decision by the 19th when I am scheduled for a chemo teaching session.
I am so glad to have you ladies to bounce these things off of. I would have been really freaked today if I hadn't been talking with you all and reading your posts. Initially when he told me I needed chemo, he said 8 cycles, now he is saying 6. That would have really concerned me if I didn't know that both of you were recommended 6 cycles.
I had lab drawn today with a CA-125, but of course I probably won't get the results until next week. I am scheduled for port a cath insertion on the 20th and CT scan on the 21st. Things are starting to get busy again. Hopefully, we can get this started by the last week of the month.
Oh, I also ordered a wig today, it should be in sometime next week. I'll have to take a picture with it on and post it so you can tell me what you think. I plan on wearing caps mostly, but wanted to have the wig for special occasions and when I go back to work.
Thanks for being there.
Hugs and prayer to all.
Deanna

pjba11

lots to think about
Deanna you have a lot to think about. Where is the best place to read about your clinical trial or is it best to keep searching and send you anything we find? Linda how is your dental going? Marge and Teresa are your eyes and those side effects doing better? You are all so quiet!! You are all in my prayers. When things get tough the tough get tougher,,,, this journey is rough but I know you are so strong. Put a fire under this horrible stuff!!
(FYI; Deanna If you are nervous about your CA125 results: They are able to get them done and give them to you the same day. They do it each time for me. I had to rant and rave for a bit, but now I get them within 3-4 hours. For my 3 month check ups I have my IV started in infusion, then they draw my blood for my CA 125 from that, use the same line for my scan and in 4 hours I have my oncologist appointment with all of my scan and CA 125 results. This to me is far less nerve wracking than having to wait days for any of the results. Less stress is always the answer and my Dr repects the fact that the waiting just isn't acceptable for me. )