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

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  • pjba11
    pjba11 Member Posts: 188
    #142
    Nov 10 post
    Linda, You may want to review my post on Nov 10 (I think) this is what my clinical trial was based on and this is what most of the articles are saying may have doubled our survival rate. First they 'rated' the staging of the surgery then they 'sandwiched' the chemo and radiation with the brachy sessions last. I felt my treatment was very aggressive and at the time emotionally that is what kept me in the fight. I am still NED!! I am sure that many oncologists write there own treatments and they may be fine. None of my Doctors wanted to be as aggressive as this trial, but I insisted. So far I feel I have won!!!
  • deanna14
    deanna14 Member Posts: 732
    #143
    pjba11 said:

    Nov 10 post
    Linda, You may want to review my post on Nov 10 (I think) this is what my clinical trial was based on and this is what most of the articles are saying may have doubled our survival rate. First they 'rated' the staging of the surgery then they 'sandwiched' the chemo and radiation with the brachy sessions last. I felt my treatment was very aggressive and at the time emotionally that is what kept me in the fight. I am still NED!! I am sure that many oncologists write there own treatments and they may be fine. None of my Doctors wanted to be as aggressive as this trial, but I insisted. So far I feel I have won!!!

    Supplements
    Peggy,
    Where do you get the supplements that you take?
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #144
    Thanks for the various 'order' options for treatment schedules
    Peggy: I re-read your treatment schedule again, and will bring that 'sandwiching' idea up again with my chemo oncologist on Monday also. Who can argue with proven success, right? My radiation oncologist was pretty adament that my chemo come first, as he says he sees bone marrow compromised by the radiation to a degree that many women cannot complete their complete prescribed chemo rounds because their white counts get too low to continue. And the chemo oncologist and surgeon both have said that it doesn't matter what you do first as long as you do both. I wish our cancer had a 'gold standard' of treatment that was universally subscribed because it worked all the time. I just want it to be adequately aggressive so that it's effective.

    I took a photo of myself today in a hat, thinking I should put a more up-to-date photo of myself here. The photo I am currently using is what I have on my business cards and website, and I just now realized it is at least 4 years old. When I compare the new photo I just took to the old one posted here, I can see that I've aged in the past 4+ years. (HECK! I've aged in the 4+ MONTHS since this cancer thing started!!) I think I'll wait until I'm completely bald (couple of days) and take a new photo, and then see if I have the nerve to post it. For now I will let you all be deluded as to how young I look for 55! HA!
  • pjba11
    pjba11 Member Posts: 188
    #145
    lindaprocopio said:

    Thanks for the various 'order' options for treatment schedules
    Peggy: I re-read your treatment schedule again, and will bring that 'sandwiching' idea up again with my chemo oncologist on Monday also. Who can argue with proven success, right? My radiation oncologist was pretty adament that my chemo come first, as he says he sees bone marrow compromised by the radiation to a degree that many women cannot complete their complete prescribed chemo rounds because their white counts get too low to continue. And the chemo oncologist and surgeon both have said that it doesn't matter what you do first as long as you do both. I wish our cancer had a 'gold standard' of treatment that was universally subscribed because it worked all the time. I just want it to be adequately aggressive so that it's effective.

    I took a photo of myself today in a hat, thinking I should put a more up-to-date photo of myself here. The photo I am currently using is what I have on my business cards and website, and I just now realized it is at least 4 years old. When I compare the new photo I just took to the old one posted here, I can see that I've aged in the past 4+ years. (HECK! I've aged in the 4+ MONTHS since this cancer thing started!!) I think I'll wait until I'm completely bald (couple of days) and take a new photo, and then see if I have the nerve to post it. For now I will let you all be deluded as to how young I look for 55! HA!

    neulasta (spelling?!)
    I had the same objection of the white count and immunity... but I knew my cancer was aggressive...very aggressive. I opted to go with the radiation 'sandwiched' because I wanted to have both the radiation and the chemo working full time. The neulasta is given as a shot the day after chemo and it does protect the white cells/ immunity just fine. ($5000.00+ per injection) I really needed the reassurance that both of the chemo and the radiation worked together since many articles stated that our type of cancer may resist chemo. The drops I take are called Z Natural. They can be used with both chemo and radiation. I have talked to the scientist who has created them many times and he does know how they interact. They are my mini chemo after all other treatment stopped. I also do Esiak and multi vitamins with calcium for the bone damage. Fish oil is good too. I take the drops 3 times a day the esiak every day and the rest when I think of it. I am very surprised that none of you are on nuelasta especially as we enter cold and flu season. I would be very concerned that if your counts get down your treatments will stop and with our aggrssive type that is not good.!! Neulasta helps protect you from this type of invasion. This is my story and I am sticking to it!!!! :)
  • pjba11
    pjba11 Member Posts: 188
    #146
    pjba11 said:

    neulasta (spelling?!)
    I had the same objection of the white count and immunity... but I knew my cancer was aggressive...very aggressive. I opted to go with the radiation 'sandwiched' because I wanted to have both the radiation and the chemo working full time. The neulasta is given as a shot the day after chemo and it does protect the white cells/ immunity just fine. ($5000.00+ per injection) I really needed the reassurance that both of the chemo and the radiation worked together since many articles stated that our type of cancer may resist chemo. The drops I take are called Z Natural. They can be used with both chemo and radiation. I have talked to the scientist who has created them many times and he does know how they interact. They are my mini chemo after all other treatment stopped. I also do Esiak and multi vitamins with calcium for the bone damage. Fish oil is good too. I take the drops 3 times a day the esiak every day and the rest when I think of it. I am very surprised that none of you are on nuelasta especially as we enter cold and flu season. I would be very concerned that if your counts get down your treatments will stop and with our aggrssive type that is not good.!! Neulasta helps protect you from this type of invasion. This is my story and I am sticking to it!!!! :)

    PS LINDA YOU ARE STILL BEAUTIFUL!!
    It will take more than a lack of hair to deminish you!!
  • deanna14
    deanna14 Member Posts: 732
    #147
    pjba11 said:

    PS LINDA YOU ARE STILL BEAUTIFUL!!
    It will take more than a lack of hair to deminish you!!

    Bald is beautiful!
    I agree!

    Can you get the supplements at places like GNC or do you have to get them from an herbal store? Did your doctor have any objection to you taking them. I've been told not to take a multi vit during chemo because the antioxidants have the potential for interfering with the chemo?
  • pjba11
    pjba11 Member Posts: 188
    #148
    deanna14 said:

    Bald is beautiful!
    I agree!

    Can you get the supplements at places like GNC or do you have to get them from an herbal store? Did your doctor have any objection to you taking them. I've been told not to take a multi vit during chemo because the antioxidants have the potential for interfering with the chemo?

    suppliment
    It will be fun to see the new fashion statements coming out with you three!! You may be surprised how 'creative' just a bandana can become!! Deanna I wish I knew more about the vitamins and chemo, but I do not. I took the essiak and the Z natural all the way through chemo. The vitamins and calcium I was was not as strict with. My oncologist looked at the Z natural 'ingredient' list and was fine with it. One of the reasons I liked my oncologist is that she had a very open mind. She always encouraged me that I had made good choices with the plans I made. She knew we had to be aggressive and that being that aggressive with would have to be monitored closely. It is a good feeling to have a Doctor really talk and listen. Many times we still talk for at least 2 hours when I go in for my 3 month scans. She always sets my appointment up for the end of the day. I get my scans and CA125 done mid morning and then go shopping (we live quite a distance away) while they read my tests and then I get to see her about 3:00. She has always been wonderful for information. Before she came here she was in Mayo. If I have questions that she can not answer she calls her past partners at Mayo and then I feel like I have the best. I hope you have a good doctor that you can call directly anytime. It is a great comfort.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #149
    I'm running a low-grade fever and have a runny nose
    Should I be worried? My temp was 99.8 last time I took it. I have a very runny nose and sore throat, nothing I would ordinarily be concerned about. But I'm to have chemo again Monday. Any recommendation? I phoned my oncology nurse and she said NOT to take anythung that would mask a rise in temperature and to call immediately if my temp reached 100.5.
  • pjba11
    pjba11 Member Posts: 188
    #150
    oh ...........You are beautiful. Your picture brings tears..
    This fever is not something I know about. I was not sick during chemo. Once again the neulasta just after each chemo was supposed to cover this and it must have helped me stay well. I sure hope your Doctor can tell you the pros and cons of using it. I was so afraid that I would too get sick and not be aggressive enough with the chemo. Let's hope that this will pass and not change your count or raise your CA125. (I noticed that this reply is not in sequence so I hope it shows up in the right place.) Please take extra care of yourself and get well.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #151
    My temp hit the magic number of 100.5 & I had to call again.
    As instructed, when my temperature hit 100.5 a little bit ago, I phoned the 'on call oncologist'. He said that if this were the MIDDLE week between chemos, a temp of 100.5 would require me to come in to the emergency room tonight to have my blood drawn for a white count. But since I am so close to my chemo date and I shouldn't be all that vulnerable this week, this is probably just a cold. I am to take my temperature again at 10:45 tonight and come in to the ER only if it hits 102 degrees. My husband is pacing the floor worrying and cursing my son Eric who came in for Thanksgiving with a bad cold.

    DEANNA: Your photo is GOEGEOUS, such a beaytiful bride!

    I tred to change my photo to show you all my new baldy-head, but I must be doing something wrong. Do I need to first delete my old photo? I tried that and uploaded the new photo, and it said the change was made, but I still see my old photo up there. Any hints?
  • shortmarge
    shortmarge Member Posts: 291
    #152
    lindaprocopio said:

    My temp hit the magic number of 100.5 & I had to call again.
    As instructed, when my temperature hit 100.5 a little bit ago, I phoned the 'on call oncologist'. He said that if this were the MIDDLE week between chemos, a temp of 100.5 would require me to come in to the emergency room tonight to have my blood drawn for a white count. But since I am so close to my chemo date and I shouldn't be all that vulnerable this week, this is probably just a cold. I am to take my temperature again at 10:45 tonight and come in to the ER only if it hits 102 degrees. My husband is pacing the floor worrying and cursing my son Eric who came in for Thanksgiving with a bad cold.

    DEANNA: Your photo is GOEGEOUS, such a beaytiful bride!

    I tred to change my photo to show you all my new baldy-head, but I must be doing something wrong. Do I need to first delete my old photo? I tried that and uploaded the new photo, and it said the change was made, but I still see my old photo up there. Any hints?

    Temp
    Hugs and Prayers Linda, take care of yourself. I like your new picture. I plan on posting a photo when I am completely bald. My hair is so thin it looks terrible, I think bald will look much better. HATS ARE ITCHY!!!

    I'm with you in spirit. Off to chemo round #2 tomorrow.

    Hugs...
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #153
    Can you see how almost bald I am in the photo?
    The photo I posted was taken at my hairdresser's. I agree that my head will look better when the hair is ALL gone rather than these pitifully thin remaining hairs with my head clearly visible through it all. The hairdresser left my bangs, so that I'd have a little bit of hair peaking out from under my hats, since the 'bangs' hair doesn't seem to be falling out as much yet. I also have a patch of much thicker hair in the back that is hanging on and really looks awful. I have little soft beige 'sleeping hats' (hat liners actually) that I wear around the house most of the time, since we are all trying to get used to my new 'look'. I see lots of stray hairs inside my hats when I take them off, and I'll bet my chemo Monday does the trick and I'll be a 'cue ball' by this time next week. I haven't put my wig on yet. I need to get comfortable with this new "me" before I start disguising myself, you know?

    My temperature is down to 99 this morning, and I'm so glad I didn't have to make the late-night run to the ER last night for blood work. The oncologist told me at my 1st chemo that a low white count during the pre-chemo testing triggers an automatic hospital admission. My sinuses are killing me and I used most of a full box of tissues last night blowing my nose. I will be holding my breath when I get my pre-chemo blood work Monday. I'm going to ask about Nuelasta, although the $7,000/shot cost is staggering and I'll bet my insirance company will balk and refuse. But maybe a low white count after Round 1 will help me get it covered??? 5 more chemo rounds means a $35,000 Nuelasta cost if I start getting it. Isn't it horrible to have to even hesitate because of the cost? If I need it, we'll just have to bite the bullet. But there are sooooo many other things I'd rather blow $35,000 on!
  • shortmarge
    shortmarge Member Posts: 291
    #154
    lindaprocopio said:

    Can you see how almost bald I am in the photo?
    The photo I posted was taken at my hairdresser's. I agree that my head will look better when the hair is ALL gone rather than these pitifully thin remaining hairs with my head clearly visible through it all. The hairdresser left my bangs, so that I'd have a little bit of hair peaking out from under my hats, since the 'bangs' hair doesn't seem to be falling out as much yet. I also have a patch of much thicker hair in the back that is hanging on and really looks awful. I have little soft beige 'sleeping hats' (hat liners actually) that I wear around the house most of the time, since we are all trying to get used to my new 'look'. I see lots of stray hairs inside my hats when I take them off, and I'll bet my chemo Monday does the trick and I'll be a 'cue ball' by this time next week. I haven't put my wig on yet. I need to get comfortable with this new "me" before I start disguising myself, you know?

    My temperature is down to 99 this morning, and I'm so glad I didn't have to make the late-night run to the ER last night for blood work. The oncologist told me at my 1st chemo that a low white count during the pre-chemo testing triggers an automatic hospital admission. My sinuses are killing me and I used most of a full box of tissues last night blowing my nose. I will be holding my breath when I get my pre-chemo blood work Monday. I'm going to ask about Nuelasta, although the $7,000/shot cost is staggering and I'll bet my insirance company will balk and refuse. But maybe a low white count after Round 1 will help me get it covered??? 5 more chemo rounds means a $35,000 Nuelasta cost if I start getting it. Isn't it horrible to have to even hesitate because of the cost? If I need it, we'll just have to bite the bullet. But there are sooooo many other things I'd rather blow $35,000 on!

    Round 2
    My blood was good except my liver. They are very concerned because it is elevated (very high). We came to the conclusion that it has been the tea that I have been drinking (green tea) so I have to go back on the 15th for blood work. The say that is when you are at your lowest. My CA125 was 17.25, wahooooooo!

    Glad you didn't have to make that hospital trip.

    Hugs
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #155
    GREAT CA-125!! Congratulations, Marge!!
    I will be soooo thrilled if I manage to score a CA-125 like yours, Marge! What was your number before this latest one? I'm already planning to rationalize, if my CA-125 goes up when they draw blood Monday, that my numbers were affected by my cold. I'm so afraid that my cancer isn't being killed by the chemo. It is a WONDERFUL comfirmation when your numbers drop into normal ranges after just 1 round of chemo. I am so happy for you!

    Please, Marge, tell us a little more about this liver thing. I didn't even realize that doctors were looking at your liver in the pre-chemo blood work. I think that all chemo drugs are filtered out through your liver, and can imagine that chemo would be hard on the liver. But this isn't anything anyone's ever mentioned as a side effect. Do you feel okay? ((((Marge))))
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #156
    Somehow I double-posted, so I'll add another EDIT snippet here.
    My grandson (6 years old) stopped in for the first time today in 3 days, as he has a cold too. He just wanted to open the 3 little tins on my Advent Tree and get his little count-down-to-Christmas prizes. I had a hat on when he arrived (it's COLD here!), but whipped it off to show him my balding head. Poor little thing immediately turned away from me and whispered "Why did you do that to your hair, Grammy?" He seemed shaken up at first, so I put my hat back on, and within a few minutes he was asking for a ZipLock bag for his little prizes and seemed to be over it. I guess you never know who will be freaked out.
  • pjba11
    pjba11 Member Posts: 188
    #157
    CA 125/Liver
    Lot's to deal with for all of you. Glad you did not have to go to emergency and suck up more germs. Marge, So glad #2 day is over for you. Have you done a port or are you doing one at a time? I had a slight elevation in my liver. Never had to address it so I have nothing to compare for you. Wonderful to hear you are able to get your CA125 results back in the normal range. Linda don't be concerned or mislead by your CA125 we are all so different. Before I had surgery and my cancer was 1C my CA125 was 7. Now it is averaged out at 12. The highest it ever got was in the 40's.(?) If you get your CA125 done at different labs they can very alot also. If you get them done by the same 'method' they will have a truer outcome. Also if your CA125 is not a true reading for you the insurance companies will pay for scans more often. Marge your picture is nice too. You look different from the other picture though. You are all pretty women. This hair thing is ongoing. It seems we will all have a story or two about it. Here is one of my experiences. My neighbors/good freinds have a grandson (about 4 years old) who in my opinion is always testing which button to push... he is a INSTIGATOR for sure and a screamer... but his mom thinks his halo always shines. One day while I was with him at his grandmas he saw me take off my wig.... hot hot day. Then I put it back on. He was amazed. I took it off again and let him wear it. Then I told him that his moms hair could do that too, all he had to do was go home and give her hair a real HARD jerk and it would come right off for him..... Never heard how much of her hair came 'off' for him!! I know.. It was mean. But if you knew this child you may see more of my side. Mean old grandma!! Wishing you all good luck and wellness this coming week. ps Linda my insurance had no questions about the nuelasta, I had been concerned too when I saw the bill!! I thought for sure it was a mistake and that the injection was $50.00 or even $500.00 not $5,000.00. :(
  • shortmarge
    shortmarge Member Posts: 291
    #158
    lindaprocopio said:

    GREAT CA-125!! Congratulations, Marge!!
    I will be soooo thrilled if I manage to score a CA-125 like yours, Marge! What was your number before this latest one? I'm already planning to rationalize, if my CA-125 goes up when they draw blood Monday, that my numbers were affected by my cold. I'm so afraid that my cancer isn't being killed by the chemo. It is a WONDERFUL comfirmation when your numbers drop into normal ranges after just 1 round of chemo. I am so happy for you!

    Please, Marge, tell us a little more about this liver thing. I didn't even realize that doctors were looking at your liver in the pre-chemo blood work. I think that all chemo drugs are filtered out through your liver, and can imagine that chemo would be hard on the liver. But this isn't anything anyone's ever mentioned as a side effect. Do you feel okay? ((((Marge))))

    Liver
    They gave me a book about chemo and I did read about not taking any herbs because they react to the chemo. I never even thought to think tea is an herb. They also told me not to eat or take anything with a mushroom base and dang if I didn't eat something Wednesday with mushrooms. I have to watch my skin tone and if it starts turning yellow and if my back starts to hurt I have to call the doctor. My back was hurting this week but I thought it was old age and I was feeling great. I go back on the 15th for blood work to see if it is still elevated, if it is they are going to adjust the chemo. I usually drink a lot of water but it was tasting like metal to me so I made ice tea out of green tea. Guess I'm going to get use to the metal taste. I put some lemon in it tonight and it taste better.

    My CA-125 before surgery was 33, the blood work on Nov. 11 showed it to be 45.5 and now it is 17.25.

    Your hair is beautiful.

    Hugs!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #159
    PEGGY: You KILL me!!! HAHAHAHA! You're terrible!! (not).
    You are too funny, Peggy. There's a little naughty streak in you, girl! I love it!

    Marge, I drink tea all the time! Green tea, black tea, all kinds of herbal teas. I had no idea that was a no-no. I am trying so hard to stay hydrated so that my veins stay good enough to forego the port. I thought tea was one of those cancer-fighting wonder 'foods', anyway. I am shocked, and will have to change my ways. Right now I'm chugging cranberry juice because of my cold and sore throat. Juice always makes me feel a little better. It's funny how your taste is affected. I just ate a tangerine and it tasted so bitter. I am anxious to get my 2nd round of chemo behind me. Are you buzzing from the steroids? I will be up all night for 3 days, scurrying around like a busy bee all day, crashing hard by day 4 if it's like last time. ((((Marge))))

    Deanna must be honeymooning; she hasn't been in that I saw. I'm glad.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #160
    just deleting double post
    I must be too impatient and keep clicking on the SUBMIT. I'm using EDIT to delete this double post. Sorry.
  • shortmarge
    shortmarge Member Posts: 291
    #161
    lindaprocopio said:

    PEGGY: You KILL me!!! HAHAHAHA! You're terrible!! (not).
    You are too funny, Peggy. There's a little naughty streak in you, girl! I love it!

    Marge, I drink tea all the time! Green tea, black tea, all kinds of herbal teas. I had no idea that was a no-no. I am trying so hard to stay hydrated so that my veins stay good enough to forego the port. I thought tea was one of those cancer-fighting wonder 'foods', anyway. I am shocked, and will have to change my ways. Right now I'm chugging cranberry juice because of my cold and sore throat. Juice always makes me feel a little better. It's funny how your taste is affected. I just ate a tangerine and it tasted so bitter. I am anxious to get my 2nd round of chemo behind me. Are you buzzing from the steroids? I will be up all night for 3 days, scurrying around like a busy bee all day, crashing hard by day 4 if it's like last time. ((((Marge))))

    Deanna must be honeymooning; she hasn't been in that I saw. I'm glad.

    Good Morning
    No I wasn't buzzing from the steriods yesterday, I think the benedryl got me. I slept almost three hours during chemo and was tired when I got home. Went to bed around 11:00 and slept until 4:45, having liver problems might be making me tired too. I have a slight headache this morning but otherwise feeling really good. Did not have that real groggy head like the first time but like I said before I think I was still recovering from surgery and was having some sugar problems. No nausea at all. I hope that fourth day isn't as bad as the last but the nurse said that if that is what happen the first time that usually is your pattern. My back does not bother me today and I'm not yellow. I drank almost a 1/2 gallon of water when I got home yesterday, going to flush my system out!

    Today is my son's 28th birthday, wow time flies. I'm going to fix him his favorite mac and cheese. He was in the Army and in the intial invasion of Iraq (March 20, 2003). I really worry about him and it makes me sad to see how bad this war has affected him. He is finally getting help and health care. He went for his first physcial in four years and they told him he has to go every six months because they have been exposed to radiation and I believe they were exposed to alot more then that. I know he is really worried about it especially since he is watching me go through this.

    Linda, they check your blood for your red blood count, white blood count, clotting, electolytes, kidney function, liver function and tumor marker. These are the important ones to them. It's the way they know how to adjust the chemo or whether you are going to get chemo that day or not. They check so much more but those are the important ones for them. They gave me a print out of my results and explained everything to me. I think they thought I was going to freak out about my liver results and I just said "oh well just another bump in the road, we'll fix it and move on". I'm going to buy some ginger ale today and try to avoid taking any nausua medicine. Give my liver a chance to settle down!

    My cousin who is fighting breast cancer gave me a book call "The Welless Community; Guide to Fighting for Recovey from Cancer" by Harold H. Benjamin, Ph.D. I highly recommend it. My husband is even reading it and is finding it beneficial for himself.

    Hope y'all have a great day. MIND, BODY AND SOUL.

    Hugs

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