Alleviating & controlling DOXIL side effects ; what I've learned

2

Comments

  • Songflower
    Songflower Member Posts: 608

    Take a deep breath
    Linda, focus on the fact that you are feeling so good on the Doxil. Plus, your doc is telling you not to read too much into the CA125. Projecting into the future is so difficult not to do, especially when we want to protect our loved ones. That is, however, when we have to strongly tell ourselves, "One step at a time!" and do whatever we can to stop our mind from spinning. I truly know that this is easier said then done but we all know how damaging stress can be.

    Hey, maybe my first treatment of Gemzar late this afternoon has whacked out my brain but what if we universally set a time to all "Take a Deep Breath" and then loudly exclaim, "One step at a time we will beat this demon!" Although it sounds a bit corny, I see it as a way to alert the universe that we are a force who means business! What say you, gals?

    Enjoy your weekend...the changing leaves are just magnificent...put your concerning thoughts aside...and LIVE, LAUGH, LOVE!

    My thoughts and prayers are with you.

    Peace and hope, JJ

    Linda
    Linda,

    I am not sure when is the best time to check CA 125 while on doxil. I do know that it goes up and down. I got to the point where I didn't look at it. It went down best after the fourth one; that was weeks down the road.

    I agree we have to stop putting so much CA 125. It seems to me that if we were all in the normal range then we would never recur. So what does normal range really mean?

    I pray for all of us before I fall asleep. I will pray this week that our CA125 stops stealing our days away from us.

    Thank you for sharing all that you are.
    Love,
    Diane
  • maggie_wilson
    maggie_wilson Member Posts: 596

    My CA-125 from yesterday's lab was 190.4, up from 155. :(
    ARGH! I'm afraid I'm going to have some bad news for my family right before the holidays. My CA125 climbed to 134 while I was trying to get into that Clinical Trial. Then my first round of Doxil took it up to 172 at my nadir labs, and 155 at the labs I had right before my 2nd Doxil infusion. Yesterday I had my nadir labs drawn to see where I am after 2 rounds of Doxil. My CA125 shot back up to a new all-time high of 190.4. My oncologist told me not to read too much into it, but I can't help but be concerned that Doxil simply isn't working for me. I'd love for him to add carboplatin to the Doxil but he knows my platelets and red counts will tank if we do. Maybe I can talk him into adding Avastin, although he is not an Avastin fan.

    We're going to do 1 more round of Doxil on November 11th and then do a new CT/PET scan. I am worried that I will have bad news for my family right before the holidays; they will be devastated if I have disease progression. I feel so GOOD on Doxil; I was hoping to be able to stay on it until it shrunk these lymph nodes down to nothing. If the CT/PET shows that I have disease progression, I think we'll try targeted radiation next.

    Bummer.

    linda: ca125s just aren't reliable

    linda,

    i know you're bummed by the ca 125, but they are notoriously so unreliable, and frankly, i'd listen to your doctor re: not reading too much into it. i don't think it's such a great idea to even have labs during treatment. no one told me about labs during my chemo, so i didn't know people were actually having them during treatment (i hadn't found this site yet). are you having the labs all done at the same place? when there's a jump, don't they give you another to make sure it's not an anomaly? because your ca 125 went up, doesn't necessarily mean the doxil isn't working, the truth is, we don't know what the heck it means. i think it means something positive, however, that you are feeling so good on doxil, and i'd go with that. please, please, try not to worry too much, linda. we're all holding you close to our hearts.

    hugs and sisterhood,
    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596

    linda: ca125s just aren't reliable

    linda,

    i know you're bummed by the ca 125, but they are notoriously so unreliable, and frankly, i'd listen to your doctor re: not reading too much into it. i don't think it's such a great idea to even have labs during treatment. no one told me about labs during my chemo, so i didn't know people were actually having them during treatment (i hadn't found this site yet). are you having the labs all done at the same place? when there's a jump, don't they give you another to make sure it's not an anomaly? because your ca 125 went up, doesn't necessarily mean the doxil isn't working, the truth is, we don't know what the heck it means. i think it means something positive, however, that you are feeling so good on doxil, and i'd go with that. please, please, try not to worry too much, linda. we're all holding you close to our hearts.

    hugs and sisterhood,
    maggie

    ps linda

    i meant to also mention that as is now well known, doxil raises ca 125s, who knows how high? or for how long? from what i understand, your ca 125 numbers going up is par for the course for doxil. keep this in mind.....

    sisterhood,
    maggie
  • Sarah Ziporah
    Sarah Ziporah Member Posts: 3
    Your edifying message
    Hi though I checked in as a 'mfreshman' in Jly/august it has taken me till now to comment.
    Firstly, thank you sly so much for being three and letting me read your sage words and advice.

    I am at a sort of crossroads now, having calmest completed four rounds of weekly taxol and once every three weeks taxol and carboplatin. I am Stage IV B clear undifferentiated Uterine/Endometrial Cancer.

    My Ca 125 was 94 pre surgery, 84 post surgery and pre Chemo, and now three months later 6.2

    My doc is one of the patent holders, discovers(?) of Doxil.
    He is now suggesting stopping the taxol crab protocol after four round, not the usual 6, and doing crab doxil instead. Then seeng after four round what's up and moving to anti hormone treatment. The idea being keeping me on a maintaining and not stopping and waiting for a relapse.

    I 'knew', thanks to Linda, about the pre Doxil muga (?) test for the heart, he suggested a cardio echo as less invasive and non nuclear medicine. He also poo pooed icing during doxil treatments,ad he said ideally icing should be for 6-10 hours which isn't realistic, so don't bother at all. He also wasn't convinced about no typing but he was less emphatic ageist not typing,than he was against icing. What do you guys think?
    Thanks so much, sorry for being long winded. Sarah Ziporah
  • Sarah Ziporah
    Sarah Ziporah Member Posts: 3
    Your edifying message
    Hi though I checked in as a 'mfreshman' in Jly/august it has taken me till now to comment.
    Firstly, thank you sly so much for being three and letting me read your sage words and advice.

    I am at a sort of crossroads now, having calmest completed four rounds of weekly taxol and once every three weeks taxol and carboplatin. I am Stage IV B clear undifferentiated Uterine/Endometrial Cancer.

    My Ca 125 was 94 pre surgery, 84 post surgery and pre Chemo, and now three months later 6.2

    My doc is one of the patent holders, discovers(?) of Doxil.
    He is now suggesting stopping the taxol crab protocol after four round, not the usual 6, and doing crab doxil instead. Then seeng after four round what's up and moving to anti hormone treatment. The idea being keeping me on a maintaining and not stopping and waiting for a relapse.

    I 'knew', thanks to Linda, about the pre Doxil muga (?) test for the heart, he suggested a cardio echo as less invasive and non nuclear medicine. He also poo pooed icing during doxil treatments,ad he said ideally icing should be for 6-10 hours which isn't realistic, so don't bother at all. He also wasn't convinced about no typing but he was less emphatic ageist not typing,than he was against icing. What do you guys think?
    Thanks so much, sorry for being long winded. Sarah Ziporah
  • Sarah Ziporah
    Sarah Ziporah Member Posts: 3

    Your edifying message
    Hi though I checked in as a 'mfreshman' in Jly/august it has taken me till now to comment.
    Firstly, thank you sly so much for being three and letting me read your sage words and advice.

    I am at a sort of crossroads now, having calmest completed four rounds of weekly taxol and once every three weeks taxol and carboplatin. I am Stage IV B clear undifferentiated Uterine/Endometrial Cancer.

    My Ca 125 was 94 pre surgery, 84 post surgery and pre Chemo, and now three months later 6.2

    My doc is one of the patent holders, discovers(?) of Doxil.
    He is now suggesting stopping the taxol crab protocol after four round, not the usual 6, and doing crab doxil instead. Then seeng after four round what's up and moving to anti hormone treatment. The idea being keeping me on a maintaining and not stopping and waiting for a relapse.

    I 'knew', thanks to Linda, about the pre Doxil muga (?) test for the heart, he suggested a cardio echo as less invasive and non nuclear medicine. He also poo pooed icing during doxil treatments,ad he said ideally icing should be for 6-10 hours which isn't realistic, so don't bother at all. He also wasn't convinced about no typing but he was less emphatic ageist not typing,than he was against icing. What do you guys think?
    Thanks so much, sorry for being long winded. Sarah Ziporah

    Sorry for double comment and dumb typos
    Sorry for double comment and dumb typos, iPad 'corrected' and I Didnt notice.
    Re Ca125 highs and lows on Doxil, thanks to you guys I presented my fear that hard achieved lowered Ca125 would rise and emotionally tank me! Doc Doxil said, yes it goes up, spikes, but it drops at the end of series. Did that happen to any of u guys?
    Sarah Ziporah
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Sorry for double comment and dumb typos
    Sorry for double comment and dumb typos, iPad 'corrected' and I Didnt notice.
    Re Ca125 highs and lows on Doxil, thanks to you guys I presented my fear that hard achieved lowered Ca125 would rise and emotionally tank me! Doc Doxil said, yes it goes up, spikes, but it drops at the end of series. Did that happen to any of u guys?
    Sarah Ziporah

    Sarah: on Doxil my CA125 goes up and down and up and down!
    Sarah: My CA125 was 134 before I started Doxil. 2 weeks after my 1st infusion it went up to 170, 2 weeks later it dropped to 155, after my 2nd infusion it went up to my all-time high CA125 190.4. Two weeks later, at the pre-chemo labs before my 3rd Doxil infusion it was 181! I don't know what to think. I hope everyone is right and that one of these labs I get a big drop.

    But for now I am taking that 9 point drop as a little (very little!) bit of good news. That's still a long way up from the normal of 35 or less, but down from the 190.4 of 2 weeks ago. I had my 3rd infusion of Doxil Thursday and another Nuelasta shot yesterday to keep my immunity good. The plan is to do another CA125 and a CT/PET scan in 3 weeks and see what's really going on and if the Doxil is working at all. I will also have my routine every-3-months internal exam sometime late this month. If the scan shows disease progression, we'll see if targeted radiation is still an option. If not, my oncologist said carboplatin as my next chemo. I had carboplatin in combination with taxol as my original treatment protocol, so I know I can tolerate it, although it did knock my red blood count and platelets down low enough that I needed a blood transfusion after each of the last 3 rounds of it that I had back in early 2009. But perhaps they will fractionate it into a smaller dose taken more often like they did with the weekly taxol. I had a little nueropathy with my original carbo/taxol rounds so I hope that doesn't return.

    I feel really good. The rash on my torso is almost gone since I got some prescription steroid cream for it; and my hands, feet, and mouth are all still free of the 'Doxil sores'. I am being reasonably vigilant with the recommended 'self care'. I still get outside to play in my garden (wearing thick gloves to protect my Doxil hands) and I was out for dinner TWICE last week with friends. I am making Thanksgiving dinner for my extended family. I really DO feel good as long as I don't over-do and I'm truly happy with this beautiful fall! Life is good on Doxil! I hope I can stay on it and that it's working. The oncology nurses at Doxil continue to call and check up on me. I asked and they do record everyone's progress so that they can improve the self-care recommendations they offer based on broad anecdotal evidence.
  • Always Hopeful
    Always Hopeful Member Posts: 234

    Sarah: on Doxil my CA125 goes up and down and up and down!
    Sarah: My CA125 was 134 before I started Doxil. 2 weeks after my 1st infusion it went up to 170, 2 weeks later it dropped to 155, after my 2nd infusion it went up to my all-time high CA125 190.4. Two weeks later, at the pre-chemo labs before my 3rd Doxil infusion it was 181! I don't know what to think. I hope everyone is right and that one of these labs I get a big drop.

    But for now I am taking that 9 point drop as a little (very little!) bit of good news. That's still a long way up from the normal of 35 or less, but down from the 190.4 of 2 weeks ago. I had my 3rd infusion of Doxil Thursday and another Nuelasta shot yesterday to keep my immunity good. The plan is to do another CA125 and a CT/PET scan in 3 weeks and see what's really going on and if the Doxil is working at all. I will also have my routine every-3-months internal exam sometime late this month. If the scan shows disease progression, we'll see if targeted radiation is still an option. If not, my oncologist said carboplatin as my next chemo. I had carboplatin in combination with taxol as my original treatment protocol, so I know I can tolerate it, although it did knock my red blood count and platelets down low enough that I needed a blood transfusion after each of the last 3 rounds of it that I had back in early 2009. But perhaps they will fractionate it into a smaller dose taken more often like they did with the weekly taxol. I had a little nueropathy with my original carbo/taxol rounds so I hope that doesn't return.

    I feel really good. The rash on my torso is almost gone since I got some prescription steroid cream for it; and my hands, feet, and mouth are all still free of the 'Doxil sores'. I am being reasonably vigilant with the recommended 'self care'. I still get outside to play in my garden (wearing thick gloves to protect my Doxil hands) and I was out for dinner TWICE last week with friends. I am making Thanksgiving dinner for my extended family. I really DO feel good as long as I don't over-do and I'm truly happy with this beautiful fall! Life is good on Doxil! I hope I can stay on it and that it's working. The oncology nurses at Doxil continue to call and check up on me. I asked and they do record everyone's progress so that they can improve the self-care recommendations they offer based on broad anecdotal evidence.

    Good Luck, Linda
    Continue to feel good after this 3rd Doxil treatment. You are quite a trooper...Thanksgiving dinner, you go, Girl!

    Peace and hope, JJ
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Good Luck, Linda
    Continue to feel good after this 3rd Doxil treatment. You are quite a trooper...Thanksgiving dinner, you go, Girl!

    Peace and hope, JJ

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!

    Linda I will be thinking of you Monday
    I hope that all goes well with your CT/PET scan. Can they use your port for that scan? Someone told me they could not use my power port for the PET scan.

    I hope the Doxil is working for you and you won't have to change treatments. Until now you have done so well with the Doxil. Sorry to hear the Hand and foot symptoms are affecting you now. They do not sound like fun to go through.

    I continue to admire your perserverance and attitude. You are a true Warrior for us. I so appreciate all you updates of the good and the bad of your treatments.

    I know how hard the waiting is for test results. Is you daughter-in- law able to give you a "head's up" on the results.

    Thinking of you. So glad you continue to enjoy those grandchildren. In peace and caring.
  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!

    Sending comforting thoughts your way.
    Linda,

    Sending comforting thoughts your way while you undergo your CT/PET scan. I hope they do not let you wait too long for the results. Will they make you wait for your appointments for your results?

    I hope your side effects start to subside.

    Wishes and hugs,

    Kathy
  • Always Hopeful
    Always Hopeful Member Posts: 234

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!

    Sorry to hear...
    So sorry to hear you are now experiencing the hand and foot issues, Linda. That's a real bummer! With it all, though, you still ventured out on Black Friday...more power to you.

    Prayers are coming your way for a quick response regarding your ct/pet scan and for much less discomfort.

    Peace and hope, JJ
  • LadybugBuz
    LadybugBuz Member Posts: 1
    My mom just diagnosed with UPSC
    Hello Linda and others,
    I just came across this site while I was researching info to better understand my mom's cancer. We found out less than 2 weeks ago that my mom has stage 3b UPSC. It's quite overwhelming trying to grasp all this information that's so foreign. My mom is 59.

    Unfortunately, the ob/gyn did not have a gynecologist oncologist present when he did the hysterectomy. When the gyno oncologist did look at her he said he disagreed with what the gyno did and would have taken out more (additional lymphnodes down farther?). But at this point he suggests starting chemo Dec 15th after she heals.

    Her second opinion gyno oncologist said he would go back into surgery after she's healed (roughly Dec 15th) to fully see what he's dealing with and remove more, then after healing from the second surgery start chemo.
    I'm thinking she should get a third opinion, but with a rare cancer who are the experts in this?
    Just wondering if anyone had thoughts or experienced this just after finding out what you have. How many opinions is it common to get? And where is the place that has the most experience with this?
    Thanks!
  • Kaleena
    Kaleena Member Posts: 2,088 Member

    My mom just diagnosed with UPSC
    Hello Linda and others,
    I just came across this site while I was researching info to better understand my mom's cancer. We found out less than 2 weeks ago that my mom has stage 3b UPSC. It's quite overwhelming trying to grasp all this information that's so foreign. My mom is 59.

    Unfortunately, the ob/gyn did not have a gynecologist oncologist present when he did the hysterectomy. When the gyno oncologist did look at her he said he disagreed with what the gyno did and would have taken out more (additional lymphnodes down farther?). But at this point he suggests starting chemo Dec 15th after she heals.

    Her second opinion gyno oncologist said he would go back into surgery after she's healed (roughly Dec 15th) to fully see what he's dealing with and remove more, then after healing from the second surgery start chemo.
    I'm thinking she should get a third opinion, but with a rare cancer who are the experts in this?
    Just wondering if anyone had thoughts or experienced this just after finding out what you have. How many opinions is it common to get? And where is the place that has the most experience with this?
    Thanks!

    First of all, let me say I
    First of all, let me say I am sorry your mom has this diagnosis and has to go through this. I would certainly get another opinion if you and your mom don't feel right. Usually your instincts will guide you.

    I had my hysterectomy and it wasn't until after my hysterectomy that they found cancer. They went back in for a staging surgery 4 weeks later! However, I didn't start chemo until a month after that after I had a port inserted.

    Your mom will probably have several other tests too. CT Scan; maybe a PET Scan; etc., so don't be surprised if they suggest those. I had to have a barium enima too.

    Please review the other posts on here about getting tissue assays, etc. Don't be afraid to ask questions and make sure they answer you. Sometimes docs forget this is all new to you.

    Sending prayers and hugs your way.

    Kathy
  • kansasgal
    kansasgal Member Posts: 122 Member

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!

    HUGS AND HOPE
    Dear, dear Linda! (and you ARE our own dear, dear Linda)

    I hope you get good news from tomorrow’s CT/PET scan that the Doxil infusions have been helpful. I read this board almost every day and will be watching for your results. It seems like a long time to have to wait a whole week, but I surely would want to be able to review the scan results with one of my doctors instead of drawing my own conclusions.

    Really sorry to hear that the hand/foot syndrome has caught up with you and that your mouth is tender, too. And an ugly rash as well! RATS! I hope healing comes quickly.

    Hugs and hope from Sally
  • Sara Zipora
    Sara Zipora Member Posts: 231

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!

    Dear dear Linda the Doxil Queen is now a Lady in Waiting
    We spent three years as students in England, and the Queen has all of Shades of positions scurrying around her, most honorary. I hope and pray your Monday results were good for you and showed the nasty buggers running for their lives or better yet, vanishing completely.

    I got a blood transfusion last Wednesday after my last of four Taxol/Carbo rounds. My Onco wanted to 'beef me up' prior to beginning Doxil/Carbo this week Wednesday ( my hemoglobin was 8.2 and white count low). It wasn't as low at the 7.2 of three weeks ago when I had a two Pinter of blood. Anyway had my Sis's youngest of eight!!! Wedding Thurs night so I felt go for it and be stronger at the wedding! HaHaHa!
    Almost immediately into the transfusion I get pains in my stomach, call the nurse. No, this isn't a blood transfusion reaction,it's properly from taxol u just received before. Anyway this wanton for three calls,each as pains were getting worse in stomach then upper legs, finally got up, IV in hand and went to toilet only to notice EXTREME redness of face, swelling and hive like welts. Took off past nurses station were I said you are not helping me, many pts standing around, I am going to find my doc! They then called him, I was at his desk as he was shouting out orders to deal with what was Hemolytic Transfusion Reaction, when he finished he turned and saw me in front of him with a lopsided red swollen jibed face, he had apoplexy. I said shouting at the victim didn't seem useful. The system works here, call the nurses they contact me! The system doesn't work for me, I called them three times! I mutter to myself that the Biblical donkey of Bilaam SPOKE after not being answered three times! My husband at my side, whispered I should give Him a break and go back to my bed to allow the Doc to treat me, he was running down the hall now stethoscope on neck with me and IV walking behind him, kind of funny scene!
    Anyway they stopped the transfusion, I had had half, gave me ton of steroids and antihistamines, stayed under watch another two hours. Slept all day Thursday but got to the Wedding!
    They are giving me one week 'off' and hopefully/anxiously beginning Doxil/
    Carbo next week.
    Bought Eucerin and plush crocs- they only had red ones in my size!.
    Linda, my front runner, be well and strong and keep the updates coming.
    Thank you all for being out there to talk to.
    Sara Zipora
  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Thought I should stick with this thread for Doxil side effects..
    This past week, after 3 Doxil infusions to date, I've started to experience some of the hand/foot syndrome Doxil is famous for, and wanted to share about that. One toe on the very tip of one foot has a visible sore now, hard to describe a 'sore' that comes from inside instead of from a scrape. I don't even know it's there as long as I don't wear shoes. The soles of my feet are a very dark red and skin very dry, and between my (swollen now) toes is the worst. When I took the grandkids for a brief "Black Friday" shopping expedition, even with lots of Eucerin cream and fuzzy chenille socks and plush-lined Crocs, I was practically limping before we were very deep into bargain shopping. Now I'm trying to not push it. Wierd the things I can't do without pain: like jump down off the counter after I hung up a garland on my kitchen window; or clap my hands in appreciation; or open a child-proof "push-down-while-turning" bottle of cough syrup for my grandson. I HATE feeling limited!! My grandaughter said "You should get a handicapped parking pass, Grammy" ARGH!! I don't WANT to be handicapped!!! Even for a great parking space!!! HA!

    The palms of my hands aren't as red as the soles of my feet, but I had to stop wearing rings and my wrists are very sore and itchy where they rest on the keyboard. (which is why I haven't been posting here much, although I do LURK and keep up with you all and sympathize silently!) My fingertips look all wrinkly like I've been in water too long even with all the cream I keep on them. I still don't have any real mouth sores but I can feel how tender my gums are when I brush my teeth and I faithfully use a non-alcohol flouride rinse and I think that is helping.

    The steroid creme they gave me has just about healed up the rash on my torso, but now I have it on my legs, so I'm using the steroid creme there. It's not that itchy, just unattractive.

    Today is a 'no carbohydrates / no exercise' day because tomorrow is CT/PET scan day, probably the scariest scan I've had to date. With a rising CA125 even though I am in active chemo treatment, I fully expect to see some disease progression. This scan will show if Doxil is at all effective on my cancer. I have no physical symtoms of disease progression, so I am hanging my hopes on that for now. I will be anxious until I know what this sneaky cancer is up to now and where it shows up. I have an appointment with my gyne-onc for an internal and his opinion of my scan on Monday 12/06; and an appointment with my chemo-onc on Tuesday 12/07 for a discussion on my treatment options based on the results of the scan. My guess is that they won't want to tell me anything before thopse official meetings. A full week to wait! ARGH!

    Linda:
    I hope all went well

    Linda:

    I hope all went well for you yesterday at your CT/PET Scan. May you be comforted this week with positive thoughts while you wait until your meetings next week.

    Kathy
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Kaleena said:

    First of all, let me say I
    First of all, let me say I am sorry your mom has this diagnosis and has to go through this. I would certainly get another opinion if you and your mom don't feel right. Usually your instincts will guide you.

    I had my hysterectomy and it wasn't until after my hysterectomy that they found cancer. They went back in for a staging surgery 4 weeks later! However, I didn't start chemo until a month after that after I had a port inserted.

    Your mom will probably have several other tests too. CT Scan; maybe a PET Scan; etc., so don't be surprised if they suggest those. I had to have a barium enima too.

    Please review the other posts on here about getting tissue assays, etc. Don't be afraid to ask questions and make sure they answer you. Sometimes docs forget this is all new to you.

    Sending prayers and hugs your way.

    Kathy

    Just tacking on the final chapter of my Doxil sage.
    Because I think of this Discussion Board as a resource for those coming after us, I want to relate the end of my Doxil story here.

    After my 3rd Doxil round I was really beginning to have some bothersome sores between a few of my toes and fingers and on the backs of my heels when I made long treks anywhere, painful. (I still went but it hurt! HA!) Although the Rx steroid creme cleared up the rash on my torso, I broke out in a different very fine rash across the tops of my feet, up the inside of my calves and across the from of my thighs that the steroid cremem did nothing for. Luckily it did not itch or hurt, just looked bad like a million red freckles.

    I get a CT/PET scan every 3 months and so had my scan after the 3 rounds of Doxil. Turns out that Doxil DID work to shrink the malignant lymph node under my arm. But it also allowed the para-aortic lymph node that keeps winking on and off on my PETs to get a little bigger, AND for the 1st time, I had 3 little spots light up in my LIVER. And my CA125 which was 134 before I started Doxil was 292 when I ended it. :( Doxil works for some people but not for others, true for all the salvage chemo drugs. I hate to switch from Doxil because I had such good energy and digestive function on it and LOVE having eyelashes again!

    So, instead of the 4th Doxil infusion I would have had yesterday (according to my every-4-week Doxil infusion schedule), I had Carboplatin yesterday. We may re-visit Doxil down the road if we are running out of options. I woke up feeling good and consider Carbiplatin one of the 'big guns' I have left to use.

    But that's my Doxil experience. I have no regrets about trying it.
  • Always Hopeful
    Always Hopeful Member Posts: 234

    Just tacking on the final chapter of my Doxil sage.
    Because I think of this Discussion Board as a resource for those coming after us, I want to relate the end of my Doxil story here.

    After my 3rd Doxil round I was really beginning to have some bothersome sores between a few of my toes and fingers and on the backs of my heels when I made long treks anywhere, painful. (I still went but it hurt! HA!) Although the Rx steroid creme cleared up the rash on my torso, I broke out in a different very fine rash across the tops of my feet, up the inside of my calves and across the from of my thighs that the steroid cremem did nothing for. Luckily it did not itch or hurt, just looked bad like a million red freckles.

    I get a CT/PET scan every 3 months and so had my scan after the 3 rounds of Doxil. Turns out that Doxil DID work to shrink the malignant lymph node under my arm. But it also allowed the para-aortic lymph node that keeps winking on and off on my PETs to get a little bigger, AND for the 1st time, I had 3 little spots light up in my LIVER. And my CA125 which was 134 before I started Doxil was 292 when I ended it. :( Doxil works for some people but not for others, true for all the salvage chemo drugs. I hate to switch from Doxil because I had such good energy and digestive function on it and LOVE having eyelashes again!

    So, instead of the 4th Doxil infusion I would have had yesterday (according to my every-4-week Doxil infusion schedule), I had Carboplatin yesterday. We may re-visit Doxil down the road if we are running out of options. I woke up feeling good and consider Carbiplatin one of the 'big guns' I have left to use.

    But that's my Doxil experience. I have no regrets about trying it.

    Thanks
    Thanks again, Linda, for concretizing your experience. This discussion board is a reference site for so many of us and, as you said, for those coming after us.

    My best wishes for much success on the carbo protocol. It is time to knock the cr*p out of that pesky critter.

    Peace and hope, JJ
  • Always Hopeful
    Always Hopeful Member Posts: 234

    Just tacking on the final chapter of my Doxil sage.
    Because I think of this Discussion Board as a resource for those coming after us, I want to relate the end of my Doxil story here.

    After my 3rd Doxil round I was really beginning to have some bothersome sores between a few of my toes and fingers and on the backs of my heels when I made long treks anywhere, painful. (I still went but it hurt! HA!) Although the Rx steroid creme cleared up the rash on my torso, I broke out in a different very fine rash across the tops of my feet, up the inside of my calves and across the from of my thighs that the steroid cremem did nothing for. Luckily it did not itch or hurt, just looked bad like a million red freckles.

    I get a CT/PET scan every 3 months and so had my scan after the 3 rounds of Doxil. Turns out that Doxil DID work to shrink the malignant lymph node under my arm. But it also allowed the para-aortic lymph node that keeps winking on and off on my PETs to get a little bigger, AND for the 1st time, I had 3 little spots light up in my LIVER. And my CA125 which was 134 before I started Doxil was 292 when I ended it. :( Doxil works for some people but not for others, true for all the salvage chemo drugs. I hate to switch from Doxil because I had such good energy and digestive function on it and LOVE having eyelashes again!

    So, instead of the 4th Doxil infusion I would have had yesterday (according to my every-4-week Doxil infusion schedule), I had Carboplatin yesterday. We may re-visit Doxil down the road if we are running out of options. I woke up feeling good and consider Carbiplatin one of the 'big guns' I have left to use.

    But that's my Doxil experience. I have no regrets about trying it.

    Thanks
    Thanks again, Linda, for concretizing your experience. This discussion board is a reference site for so many of us and, as you said, for those coming after us.

    My best wishes for much success on the carbo protocol. It is time to knock the cr*p out of that pesky critter.

    Peace and hope, JJ