Uterine Papillary Serous Carcinoma (UPSC): any others here???
Comments
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Thanks, Marge! I ordered the book from Amazon.com!
Thanks, Marge! I ordered the book from Amazon. As much as I research, I am continually amazed how many things I DON'T know about what we are going through, & knowledge is power.
My daughter-in-law's sister did 2 tours in Iraq as a member of the Air Force, leaving behind her little baby boy and missing his first Christmas. Poor little thing was in daycare 12 hours a day because his dad had to work, and even now that his mother is back with them (stationed in Germany) he is an aloof child that refuses to share toys or even play with others and I worry that he was separated during an important bonding time. The family came here and visited 2 weeks before they left for Germany, and that beautiful little boy definitely has social issues that may require outside professional help; I hope not. War is hell on everyone affected, no doubt about it.0 -
Shaved The Hair Off!lindaprocopio said:Thanks, Marge! I ordered the book from Amazon.com!
Thanks, Marge! I ordered the book from Amazon. As much as I research, I am continually amazed how many things I DON'T know about what we are going through, & knowledge is power.
My daughter-in-law's sister did 2 tours in Iraq as a member of the Air Force, leaving behind her little baby boy and missing his first Christmas. Poor little thing was in daycare 12 hours a day because his dad had to work, and even now that his mother is back with them (stationed in Germany) he is an aloof child that refuses to share toys or even play with others and I worry that he was separated during an important bonding time. The family came here and visited 2 weeks before they left for Germany, and that beautiful little boy definitely has social issues that may require outside professional help; I hope not. War is hell on everyone affected, no doubt about it.
Couldn't stand the straggling hair so my husband shaved the rest of my hair off.
BALD IS BEAUTIFUL!!!!
Hugs...0 -
You look great!
You've got a good-looking head! (I must have heard that from a dozen people since my hair fell out! What a strange compliment! HA! But you really DO look good!) I don't think I'll even need to buzz off the rest of my hair. I have half as much hair now as I had in my 'baldy' photo I posted. My super-thin 'dandelion puff' keeps coming out every time I take off my hats. Today I decided to go into town and shop for special Christmas cards for my husband and kids, and so I put on my wig for the first time since my hair started falling out. I did my makeup and I actually thought I looked almost PRETTY for the first time in quite a while. And everyone was so glad to see me out and about. (I live in a small town so everyone knows me.) I was trying to go around bald at home to get used to my new look, but I have to say, I really think I'll be wearing my wig now more than I thought. It gave me a little lift, a nice surprise.
They didn't give me Benedril in with my chemo. Maybe if I tell them about my sleepless 'hampster days' from the steroids, they'll give me some on Monday.0 -
You girls look great!lindaprocopio said:You look great!
You've got a good-looking head! (I must have heard that from a dozen people since my hair fell out! What a strange compliment! HA! But you really DO look good!) I don't think I'll even need to buzz off the rest of my hair. I have half as much hair now as I had in my 'baldy' photo I posted. My super-thin 'dandelion puff' keeps coming out every time I take off my hats. Today I decided to go into town and shop for special Christmas cards for my husband and kids, and so I put on my wig for the first time since my hair started falling out. I did my makeup and I actually thought I looked almost PRETTY for the first time in quite a while. And everyone was so glad to see me out and about. (I live in a small town so everyone knows me.) I was trying to go around bald at home to get used to my new look, but I have to say, I really think I'll be wearing my wig now more than I thought. It gave me a little lift, a nice surprise.
They didn't give me Benedril in with my chemo. Maybe if I tell them about my sleepless 'hampster days' from the steroids, they'll give me some on Monday.
Bald is beautiful!
I just thought I would pop in and say hello. I've been trying to keep busy and am making an effort at not worrying. I am a worry wart and lay awake at night worrying about what might be or happen. I have to stop that! So... We put up our Christmas tree today, it is soooo pretty. I also did some much needed cleaning. I tired so quickly and a lot of the deep cleaning has gone undone. My husband is a great help around the house and he does so much. I think that men can't see cobwebs or they are better at ignoring them. I got them today! Now I'm sitting in my chair with my feet up, hoping that I will be so tired that I won't lay awake in bed tonight.
Tomorrow I am going to start my Christmas candy and baking. I'm excited about that.
I hope you are all feeling okay. Take care.
Hugs to all!0 -
CHEMO DAY! Round 2, and Hampster Days in full swing!deanna14 said:You girls look great!
Bald is beautiful!
I just thought I would pop in and say hello. I've been trying to keep busy and am making an effort at not worrying. I am a worry wart and lay awake at night worrying about what might be or happen. I have to stop that! So... We put up our Christmas tree today, it is soooo pretty. I also did some much needed cleaning. I tired so quickly and a lot of the deep cleaning has gone undone. My husband is a great help around the house and he does so much. I think that men can't see cobwebs or they are better at ignoring them. I got them today! Now I'm sitting in my chair with my feet up, hoping that I will be so tired that I won't lay awake in bed tonight.
Tomorrow I am going to start my Christmas candy and baking. I'm excited about that.
I hope you are all feeling okay. Take care.
Hugs to all!
The pre-chemo steroids are already working their magic, and I woke up early artifically jazzed up and full of ideas and steroid-induced energy: my chemo 'hampster days' have begun again. I was washing my face at 6 AM in my red bathrobe when I got the idea of doing a Christmas photo with the red Santa hat, and had to dash right down (husband sleeping blissfully) and pose and try and hold the digital camera out there to get a good photo. It's HARD to do a self-portrait indoors with a flash. Most of the attempts got really blurry. The big shadow is my arm holding out the camera. (I have to hit 'REFRESH' under 'VIEW' to see the new photos.)
I will be racing around following up on a million other steroid-enduced 'great ideas' for the next couple days before I crash last Wednesday. But now I must gather up my long list of questions, my special snacks and snuggy blanket, a book to read, my tissues for my leaky nose, and get dressed in comfy sweats for a 6-hour stint at chemo/hemo. Wish me luck with my numbers. Waiting for 'the numbers' is SOOOO much scarier than the needles or even the poison pumping into my veins!0 -
Good Luck!lindaprocopio said:CHEMO DAY! Round 2, and Hampster Days in full swing!
The pre-chemo steroids are already working their magic, and I woke up early artifically jazzed up and full of ideas and steroid-induced energy: my chemo 'hampster days' have begun again. I was washing my face at 6 AM in my red bathrobe when I got the idea of doing a Christmas photo with the red Santa hat, and had to dash right down (husband sleeping blissfully) and pose and try and hold the digital camera out there to get a good photo. It's HARD to do a self-portrait indoors with a flash. Most of the attempts got really blurry. The big shadow is my arm holding out the camera. (I have to hit 'REFRESH' under 'VIEW' to see the new photos.)
I will be racing around following up on a million other steroid-enduced 'great ideas' for the next couple days before I crash last Wednesday. But now I must gather up my long list of questions, my special snacks and snuggy blanket, a book to read, my tissues for my leaky nose, and get dressed in comfy sweats for a 6-hour stint at chemo/hemo. Wish me luck with my numbers. Waiting for 'the numbers' is SOOOO much scarier than the needles or even the poison pumping into my veins!
Good luck today. I pray your numbers are good and you are able to receive your treatment. I love your photo, so Christmassy.
Take care of you...
Hugs,
Deanna0 -
My photo: "The Nightmare Before Christmas": HA!!
My granddaughter, when she saw this photo, asked me, dead serious "Are you trying to be Jack Skelington, Grammy?" (the skeleton that dresses up like Santa in "The Nightmare Before Christmas") HAHAHA! She's so RIGHT!! I hadn't thought of it myself, but I look just like him in this photo! HA!0 -
My Procrit story: (from my sleepless steroid-hamster night)
Procrit is another of those incredibly expensive ($7,000 per shot) possible additions to a chemo regime, added if your platelet counts cannot be controlled to a satisfactory level by transfusions. I never heard of it until my son came over, very excited, with 4 vials of it and 4 hypodermic needles. Someone where he works had to take it with their chemo and was given a prescription for 6 vials. They only used 2 vials before their platelets were okay again, and had $28,000 worth of paid-for medicine in their refrigerator with a 2010 expiration date. When they learned that I was having chemo, they gave it to Jake, just in case I would need it. It has to stay refrigerated and never be shaken and they had been very careful, knowing its $$ value. Jake was so excited to be able to give me such a valuable gift that I didn't have the heart to tell him that I would NEVER shoot anything into my arm that wasn't prescribed especially for me. But I did have 2 nosebleeds this month, and I have a long history of mild anemia and the last 2 times I went to donate blood, they wouldn't take mine because of it. So I decided to tell my oncologist I had this, without naming names. WELL, as it turns out, this kind of thing happens all the time! People NEVER toss valuable drugs, and he told me they SHOULDN'T. They have a special drug bank at the chemo center where people turn back in medications they didn't use, and the hospital then has the option of giving out these super-expensive drugs as 'samples' to people without insurance or whose insurance refuses to pay for them. So, on December 28th when I go for my next chemo, I am donating the Procrit, And if I need it, and am not covered for it, maybe it will still be there for me. But my oncologist says he considers Procrit a 'last resort' drug and has less dangerous options to try to raise platelet levels that he tries first. Amd my platelets currently are really good. I took iron pills daily in preparation for my hysterectomy and then had very little bleeding, so I think that iron fortification is helping me now. In fact, the oncologist said I don't even need to take iron supplements currently and advised against it. So that's my Procrit story. And now you know not to toss any valuable drugs you have to buy if you don't need them.0 -
My CA-125 dropped down from 90.5 to 47!! WOO WOO!
I'm just back in from my long chemo day, but very happy with my day. All of my numbers were good: white count, platelets, everything! The best news was that my CA-125 dropped from 90.5 down to 47. I know this is not a reliable tool, but I will accept and BELIEVE all good news!
I had a fairly long discussion with my chemo oncologist this morning. At the time he didn't yet have my CA-125 yet, but he did have the rest of my numbers from this morning's blood work. He said that my strong white count doesn't yet warrant Neulasta, and my good platelet mumbers do not warrant Procrit (more on Procrit later; that's another long story). I asked about the Avastin, and he said that he uses Avastin for many of his ovarian cancer patients, but has seen bowel preferations with some Avastin users and so never prescribes that drug lightly. He made it clear that he believes it is in my best interest to take only the drugs that my numbers indicate so that we have less side affects to deal with later. I guess I agree with that.
We talked about sandwiching the radiation into the chemo. Because he didn't yet have my CA-125, he admitted that this was currently already something he was considering for me. (1st I heard that!) He told me that if my CA-125s went up this round and again next round, they would do another CT-Scan to see if they could find out why; and would asssume that the chemo wasn't keeping up with a tiny new cancer beginning to grow somewhere. Hopefully the CT-Scan would pinpoint where the tiny new cancer is, but if not they would assume it is in the pelvic area since that is where the involved lymph node was. And he would probably interrupt the chemo after the 3rd round and try external radiation to see if that could get my CA-125 down into normal range. Then we'd get back to the 3 find chemo rounds, and then come back to the internal radiation. (Just as Peggy suggested!) All of this is back OFF the table for now unless my CA-125 goes up during my pre-chemo Round 3 blood work December 29th. He also said he only rarely does radiation concurrent with chemo because it is so hard on your body, and did not think I would be able to tolerate chemo and radiation at the same time.
During this conversation where I was getting this somewhat disturbing information that I brought upon myself with all my pointed questions, I asked him one more tough question. We were talking about the Avastin and how similar our cancer and treatment is to Ovarian Cancer. I asked him flat out if UPSC has a similar prognosis as Ovarian Cancer, or does UPSC have a better survival rate? He looked me square in the eye, took a deep breath, and said "They have similar prognosis; UPSC has a prognosis no better than ovarian cancer", but then he followed it up quickly with "but that's just statistically; that's not YOU. You have an excellent prognosis." Still, his statement will haunt me in my darkest hours. I hestitate to even share it, but I also follow it up with "But that's not OUR prognosis!! Not for any of us!" We have to remind ourselves that this UPSC cancer has no symptoms and that we were all lucky enough to have our cancer found by accident before it created a tumor elsewhere. Most UPSC patients get diagnosed at very late stages which really skews the UPSC statistics. We all have a very good shot (88% cure rate was the latest stats I found for UPSC patients getting our aggresssive treatment under the direction of a Gyn/Onc.) We'll all be in that larger 88% group; I KNOW it!
We talked about supplements. He encouraged me to get back on my multiple vitamins and calcium with vitamin D. He didn't think my red count warranted me taking iron now. He said that he does not prescribe outside of Western medicine but had no bias against it as long as I am bring in anything and show him before I take it and get his opinion. I specifically asked about Peggy's "Z" supplement, and he said that he had no problem with me taking that, just to bring it in to him to look at before I take it and that he has other patients that take it with his permission. He said that there were many tests run on alternative drugs and many of them are very good. He cautioned me about the cost, which I've altready looked at and the cost wouldn't stop me from trying it. So it looks like I have some shopping to do!
One more good thing he told me. I confessed that Vic and I had gone ahead and 'done the deed' without pre-approval from anyone, reassuring him that we'd used a condom, which was new and wierd for us. He asked WHY we used a condom, and I told him that I read that in the cancer booklets they handed out to us. He laughed and said, "Use a condon if you're having sex with random strangers. Otherwise you have my blessing to have intercourse with your husband without an internal exam and without a condom!" HA! Vic was all smiles!
This is already SUCH a long post! I'll tell you the Procrit story and about the new friends I made at chemo tomorrow. Or if I am truly in my 'hampster days', and sleepless, later on tonight! I was doing Christmas cards and realize that I don't have addresses to send a greeting to my dear friends here. Anyway I could get your mailing addresses? (email: lindapro@ptd.net)0 -
HEY MARGE! I need your mailing address to send you a card!
I am doing my Christmas cards and realize I don't have a mailing address to send my dear Marge a Christmas card! I hope you see this post, Marge or if Deanna or Peggy have your address and see this, please get it to me. I can't forget MARGE on my Christmas list! Ho Ho Ho!0 -
DEANNA: I got my Heavenly Hats today, thanks to you!
I took you up on your suggestion that I register at Heavenly Hats, and I got my box of really VERY cool hats in today's mail! Thank you for the idea! Of course, I felt really guilty to be taking free hats when I can still afford to buy my own hats. (That may change once my health insurance comes up for renewal!) So I wrote them out a check for a $50 donation and had Vic take a photo of me surrounded by my 5 new hats that I enclosed with my donation. They really try and send you what you note that you like. Marge should do this if she hasn't; it's fun! Thanks, Deanna!
No one has been in all day. This website is moving like a slug the last few days. I miss you guys, but at least I've 'edited' away all of my duplicate posts with a lot of chit chat. HA!0 -
Hoping you are feeling okaylindaprocopio said:My photo: "The Nightmare Before Christmas": HA!!
My granddaughter, when she saw this photo, asked me, dead serious "Are you trying to be Jack Skelington, Grammy?" (the skeleton that dresses up like Santa in "The Nightmare Before Christmas") HAHAHA! She's so RIGHT!! I hadn't thought of it myself, but I look just like him in this photo! HA!
Hi Girls,
You have been kinda quite the last couple of days. Hope you are feeling okay post chemo, or as okay as possible. Hang in there.
I had my simulation yesterday for internal radiation. It was not the most pleasant thing I have ever been through. At least it is one step closer to being done with radiation!
Hugs and prayer,
Deanna0 -
Internal Radiationdeanna14 said:Hoping you are feeling okay
Hi Girls,
You have been kinda quite the last couple of days. Hope you are feeling okay post chemo, or as okay as possible. Hang in there.
I had my simulation yesterday for internal radiation. It was not the most pleasant thing I have ever been through. At least it is one step closer to being done with radiation!
Hugs and prayer,
Deanna
Did my first on Monday and go again today. I know the not so pleasant thing. I went home and beside the fact my ankles hurt soooooo bad I cried and cried to my husband. It doesn't hurt but you feel a little violated... But you gotta do what you gotta do!
Love you picture, always wanted to do that.
MIND, BODY AND SOUL.
Hugs0 -
Hoping next week will be better for us all.
We may have to take my questions 'off board' because I can't even (maybe I don't want to!) imagine what internal radiation would even be like. I also can't imagine how to use a dilator. I feel unprepared for what is ahead. If you know a good internet URL that 'tells all', please let me know where to go and get the scoop. Or if it's not too personal (and we've set that bar pretty low here already; HA!) please email me and tell me about what to expect because I do so much better when I'm not caught by surprise. I guess I'm like you, Marge, as I felt violated by my surprise office biopsies and surprise internal exams, and that degraded feeling is just the worst for your sense of well-being. But if I can be READY for whatever indignity is coming next, I do a lot better.
I still have that cold and cough, and have to blow my nose so softly or get a nosebleed each time. And, like an idiot, I cracked my toe HARD yesterday when I was carrying up gift wrap from the basement, and now it's black as coal and surely broken, just when my ability to heal is so compromised. ARGH! I didn't even tell my husband, who seems disapproving lately of my "self-care" (he thinks I should stop blowing my nose if it makes it bleed, and should work harder at avoiding contact with sick people, etc.), so I'm letting him assume the limping is just post-chemo aches. At Day 4 after my 2nd chemo round, I expect an achy day, but so far so good. I took an anti-nausea pill this morning for some early quesiness, but it's not too bad. My taste buds are screwed up, and cheese and all dairy products taste sooooo rank. I stand at the refrig and everything looks yukky. I was so tired yesterday that I fell asleep at 3PM and slept an hour and then went to bed at 9 for the night. I didn't get any of my grant work done at all and now am falling seriously behind.
I sound so whiny! I apologize. I FEEL whiny!! We had freezing rain last night and it's a cold, dark and gloomy day here. I plugged in the Christmas tree and that little twinkle is helping raise my spirits. I think I'll pop in a funny DVD and let that be background and try and get through some of this grant work that's piling up. Sorry to dump on you all. Once I shake this cold, my bad attitude will go with it; I promise!0 -
So sorry
Marge and Deanna; So sorry that you are going through the internal rads now. It feels very invasive during and a long time after. At least you will soon be done and it will be over!! It does not drag on like the external. I too Deanna would hate to just be newly married and have to share my body with so many proceedures when all one should have/want to do is share your body with the man you love. How long are you hooked up to that nasty gurgle machine? They had 2 machines for me. One I started with and the last 2 sessions they had a brand new machine that made very little noise and went much faster. I hope you two have the newer models. On a brighter note... has anyone done Christmas candy with Almond bark and crushed lemon drops? Maybe food does not sound good to any of you right now (?), but this was one of the candy recipes that I liked when sick. It is also very pretty to put on a fancy plate and give away. So easy yet unique enough to let people know you still have enough energy to do fun stuff. Linda I hope you get some answers on this cold and nose bleed. Do you want me to send you a bottle of Z? My prayers and heart to all of you. Peggy0 -
Attitudes allowed!lindaprocopio said:Hoping next week will be better for us all.
We may have to take my questions 'off board' because I can't even (maybe I don't want to!) imagine what internal radiation would even be like. I also can't imagine how to use a dilator. I feel unprepared for what is ahead. If you know a good internet URL that 'tells all', please let me know where to go and get the scoop. Or if it's not too personal (and we've set that bar pretty low here already; HA!) please email me and tell me about what to expect because I do so much better when I'm not caught by surprise. I guess I'm like you, Marge, as I felt violated by my surprise office biopsies and surprise internal exams, and that degraded feeling is just the worst for your sense of well-being. But if I can be READY for whatever indignity is coming next, I do a lot better.
I still have that cold and cough, and have to blow my nose so softly or get a nosebleed each time. And, like an idiot, I cracked my toe HARD yesterday when I was carrying up gift wrap from the basement, and now it's black as coal and surely broken, just when my ability to heal is so compromised. ARGH! I didn't even tell my husband, who seems disapproving lately of my "self-care" (he thinks I should stop blowing my nose if it makes it bleed, and should work harder at avoiding contact with sick people, etc.), so I'm letting him assume the limping is just post-chemo aches. At Day 4 after my 2nd chemo round, I expect an achy day, but so far so good. I took an anti-nausea pill this morning for some early quesiness, but it's not too bad. My taste buds are screwed up, and cheese and all dairy products taste sooooo rank. I stand at the refrig and everything looks yukky. I was so tired yesterday that I fell asleep at 3PM and slept an hour and then went to bed at 9 for the night. I didn't get any of my grant work done at all and now am falling seriously behind.
I sound so whiny! I apologize. I FEEL whiny!! We had freezing rain last night and it's a cold, dark and gloomy day here. I plugged in the Christmas tree and that little twinkle is helping raise my spirits. I think I'll pop in a funny DVD and let that be background and try and get through some of this grant work that's piling up. Sorry to dump on you all. Once I shake this cold, my bad attitude will go with it; I promise!
You have a right to have an attitude right now. That is why we are here, to vent and support each other. I think that it is acceptable for you to get a little behind, especially on chemo week. You just take good care of yourself!
I was having a very emotional day anyway when I had the internal radiation simulation. I go for my first treatment today and I don't think it will be as bad as the simulation. It is a little degrading due to the position etc. I will email you my experience, but I was having other issues which made it all a little less tolerable. And it is tolerable, once it is done, it is one more thing behind you!
Like I said, I will email you so you can be prepared.
Marge,
Thank you so much for the encouragement, you are so right. It just has to be done. I think I was just not prepared for what they were going to do and having an emotional day. I didn't realize you were going to do chemo and radiation at the same time. I hope you are feeling okay. Hang in there... you are so strong, both of you are.
Hugs!0 -
Thanks Peggy!pjba11 said:So sorry
Marge and Deanna; So sorry that you are going through the internal rads now. It feels very invasive during and a long time after. At least you will soon be done and it will be over!! It does not drag on like the external. I too Deanna would hate to just be newly married and have to share my body with so many proceedures when all one should have/want to do is share your body with the man you love. How long are you hooked up to that nasty gurgle machine? They had 2 machines for me. One I started with and the last 2 sessions they had a brand new machine that made very little noise and went much faster. I hope you two have the newer models. On a brighter note... has anyone done Christmas candy with Almond bark and crushed lemon drops? Maybe food does not sound good to any of you right now (?), but this was one of the candy recipes that I liked when sick. It is also very pretty to put on a fancy plate and give away. So easy yet unique enough to let people know you still have enough energy to do fun stuff. Linda I hope you get some answers on this cold and nose bleed. Do you want me to send you a bottle of Z? My prayers and heart to all of you. Peggy
Thank you for your understanding. I think a lot of my emotional reaction on Tuesday was related to that. I feel like I am being violated and to make matters worse, all of the doctors and techs are men. It just feels like no one else should be going there but my husband! BUT, it has to be done and 2 weeks from today, this stage of it will be over. I don't know yet what the machine sounds like, today will be my first actual treatment.
Almond bark and crushed lemon drops sounds fun, would you mind posting the instructions/recipe? I would like to try them, I have been baking and making candy. I think it is very therapeutic in getting my mind off all this STUFF.
Thanks again and take care of you.
Deanna0 -
saddness here
Well... here I sit crying a river. One of my friends just died. Lung cancer. Her youngest is a 4th grader. She was doing great. Clear scans. Good tests. Lungs just collapsed and she is gone. This is a tough one. At our school concert she hugged me as only survivors can and said we are going to make it!! I am so angry!! Rally for me girls...........we are here to stay.0 -
Oh, Peggy! NO! (((((Peggy)))))))))
I cry with you, dear Peggy. sad sad sad.
I have no words that can take your grief away and these cyber hugs just don't do it for things like this. I send you my love and profound sympathy across the miles and hug you HARD from afar. (((((Peggy)))))0 -
Sorry for your loss!lindaprocopio said:Oh, Peggy! NO! (((((Peggy)))))))))
I cry with you, dear Peggy. sad sad sad.
I have no words that can take your grief away and these cyber hugs just don't do it for things like this. I send you my love and profound sympathy across the miles and hug you HARD from afar. (((((Peggy)))))
Peggy,
I am so sorry for the loss of your friend. I want to validate your feelings of anger, this disease is just so unfair!!! Know that I/we are here to listen during your time of loss and always. I'm with Linda, feel the love and hugs across the miles. You 3 have become very important to me during this difficult time. I will pray for you and your friends loves ones.0
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