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

lindaprocopio said:

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.

Sarah Ziporah said:

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

lindaprocopio said:

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.

lindaprocopio said:

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!

lindaprocopio said:

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!

LadybugBuz said:

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!

lindaprocopio said:

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!

lindaprocopio said:

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.