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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I won't be posting for a few days because you are not supposed to do anything that cause friction between your toes and fingers for 3 to 5 days after a Doxil infusion to help prevent the hand/foot syndrome, with TYPING specifically listed. (ARGH! I can't imagine being cut off from you all and Facebook and my grantwriting clients this way!! Withdrawal will be awful! HA!) I wanted to post this now, since I leave in an hour for my 1st Doxil infusion. (For those who missed the last installment in my ongoing treatment drama: my insurance refused to cover the cost of any possible complications if I went into the Clinical Trial at Fox Chase & I couldn't take that risk, so I shifted to Plan B.)

My oncologist hasn't told me any of the stuff I learned myself online and from the wonderful women here and on the Ovarian Cancer Discussion Board about how to minimize and control the side affects of Doxil, so I want to get what I learned into the archives here, for anyone else who is offered Doxil as a treatment option:

1.) You shpould get a MUGA scan to make sure your heart is strong enough to take Doxil, 1 BEFORE your 1st treatment, and then at regular intervals if you take Doxil long-term to make sure you're still okay. Search for my post on 'MUGA' scans if you want to know what that test is like.

2.) Check out: http://www.doxil.com/managing_side_effect.html
Only 6% of people who ICE during their Doxil infusion get the hand/foot syndrome, as opppsed to 67% who will get it if you DON'T ice during your chemo. & yet NO one said anything about icing to me yet at my clinic! But I have 4 ice packs ready to take along and gauze to attach the ice packs to my ankles and wrists!

3.) I'm also taking along a little pot of Eucerin (original formula only) cream and will be stripping off my compression socks just before my infusion (and NOT wearing them now for the next week!), and creaming up my hands and feet real good before I put on the light little footies I brought along for the treatment. Once I get home, the women on the OVC board recommend that I wear just fur-lined crocs with no socks all the time on my feet, and to ice my hands and feet multiple times over the next 5 days and keep them lathered up with the Eucerin cream.

4.) I am wearing no bra or undies to chemo (!!!) and loose baggy pants, so that nothing rubs or makes me too warm. I may need to increase my wardrobe of baggy tops that allow access to my port, do not bind anywhere, and look okay with no bra. (GOD KNOWS WHAT THAT I CAN EVEBN FIND LIKE THAT!!) Kafcans and moo-moos might work but I've never owned anything remotely like that and may need to shop. Online it looks like a lot of them come with matching scarves for an ethnic look. Next chemo will be in 28 days, so I have lots of time to come up with a new chemo-wardrobe.

5.) Mouth sores is the other potential side affect with Doxil. i got a couple of new soft toothbrushes and baking soda/peroxide toothpaste and some no-alcohol dental mouth wash like they make for kids. One of the OVC ladies recommended an immunity building oral supplement drink made by Nestle that I may get, called ORAL IMPACT, recommended by her oncologist that she credits with saving her from any mouth sores (It's quite expensive so I didn't get it yet, but probably will once I run it by my oncologist.)

Time for me to go ! Wish me luck!

nempark
Posts: 579
Joined: Apr 2010

Isaiah 41:10
Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness.

Proverbs 17:17
A true companion is loving all the time, and is a brother that is born for when there is distress. Linda, you are a true companion when there is distress.

I am one of Jehovah's Witnesses and I do my utmost best all the time to conduct my self according to the scriptures. I have learned a new way of life since I have the Scriptures to comfort me and whom ever I come in contact with. I have also learned not to be anxious over anything, but in everything by prayer and supplication along with thanksgiving let your petitions be made known to God.
I pray and think about you and everyone on the board Mary Ann also are in my prayers. Linda you will be okay. Big Hugs June
Connie says twenty more years, I will not be greedy, I say twenty five. Love you all

Antpopoola
Posts: 10
Joined: Jun 2012

How are you doing? Those are also two of my favorite scriptures that keeps me going each day.  I am also one of Jehovah's witnesses and my source of comfort comes from the scriptures, friends, families and fellow cancer partners on this website.  We must keep on fighiting. STAY POSITIVE everyone!  I believe what the bible say at Isaiah 33:24 and Revelation 21:3,4.  There will be a time when no one will be sick also there will be no more death, mouring or pain.  A wonderful time to look forward to!

WITH LOVE

 

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

and thank you for that very helpful post re: doxil. i'm printing it, so i have it in my own personal archives. it sounds like a lot of work just controlling the side effects, but oh so worth it. we'll miss you for the next few days, linda, but we know you're taking as good care of yourself as is possible. and get that oral impact!

hugs,
maggie

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

As always, thank you Linda for sharing your knowledge. I'm off to Yoga Nidra meditation class and will send you healing thoughts.
You are a great warrior - best of luck in this battle. Barbara

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Linda....you are the ultimate "prepared" warrior!You do your research...have Plan A to Plan Z all lined up....you KNOW what you WANT and you go for it!

Pulling all the info from the experiences of other brave sisters who have taken DOXIL in one message will be most helpful to those who may need that info "down the road". And just MAYBE, cancer centers would start making that info available to others!

I am just picturing you arriving for treatment with your "Doxil Side Effects Prevention Kit". You tell your nurse to just hold on a minute with that treatment while you slather yourself in Eucerin cream, strap on your ice packs, and prepare for your treatment (sans underwear and support hose!). I love it!

AND I am counting on you to sail through the treatments with NO foot and hand problems and many more years to enjoy life to the fullest!!!

You do amaze me! Best wishes to you always!

Karen

Kaleena's picture
Kaleena
Posts: 998
Joined: Nov 2009

Sending my best to you, Linda. Thank you for all of your wonderful information. We will all miss your posts for a couple of days, but stay well. If anyone can prevent side effects, it will be you!

(((Hugs)) to you!

Kathy

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My oncology team was able to get me in for labs, an 'informed consent' Doxil educational consultation, an appointment to review my tests and labs with my oncologist, and a DOXIL chemo infusion,...all done yesterday in a 5 hour visit! & though I'm not supposed to do anything repetitive with my hands the first 5 days following the infusion (typing was on the NO-NO list), I am wide awake from the pre-chemo steroids and wanted to share a report of how well I'm doing.

My chemo-onc said my MUGA test (heart strength) results were exceptionally good, better than his own, so I am starting Doxil with a strong heart, a prerequisite as it can weaken it. My CA-125 climbed to 134 during the 5 weeks I was out of treatment getting my scans and my 2nd opinion at Fox Chase and meeting with my 3 oncologists locally. That's not scary-high but a long way from normal (35 or less), so I am happy to be back in battle mode. I did quite a bit of research on Doxil before my infusion and plan to be really good about icing my hands and feet and eating all food at room temperature (although room temp cciffee and showers sounds pretty grim to start my mornings! But I will do it! To see what else is recommended: http://www.doxil.com/managing_side_effect.html

Doxil chemo is given 28 days apart so you have adequate time to recover between infusions. I see my oncologist in 2 weeks for labs so that he can see the effect of the chemo at my nadir (the low point for bone marrow & blood counts halfway between chemos). That way he'll know if I need Nuelasta shots afterward my subsequent chemos to keep my white count up so that I don't need to worry about my immunity tanking over winter. If it looks like Doxil isn't shrinking my lymph nodes after 3 months (verified by a new CT/PET) I'll switch to targeted radiation next. But for now, I feel good!

PS: You get a big shiny purple DOXIL goodie bag from the manufacturer when you have your "informed consent" chat. It has hand cream and 2 kinds of mouth-moisturizing sprays and sunscreen. There's a water bottle and a baseball hat with the flap that goes over your next like the French Foreigh Legion. There's a soft toothbrush; and a plastic gauge to use outside to measure the sun's SUV; and another gauge that goes in the bathtub or dishwater to make sute it's tepid enough for Doxil patients. Strange, huH? I better stop; my hands are itching.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I didn't stay off the computer and got red over the part of my hands that hits the computer. I went to the beach for a wedding too. I've read just go barefoot too. Those fur lined clogs make my feet sweat. I tried to lay on the sofa and watch TV but laid on one elbow too long so you have to watch that. Good news is that all this goes away when you are finished.

Sometimes I iced down at night too. Actually, I kept a foot soaker for pedicures filled with cold water and ice and put my feet in and out while watching TV. The doxil made me sleepy. So for those days I slept. My sister said naps are better than pain!

I never had any mouth sores. Most people didn't even know I was on chemo. With cooler weather coming it will be easier.

When you can let us know!

Diane

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

when you're being bad..... please, however, don't overdo the typing....but i sure can understand why it would be so difficult not to let us know how your first day went. i can tell, you're feeling good, and looking forward, as are we, to good results with the doxil. i do appreciate your sense of humor, linda, perks me right up!. great news re: your exceptional heart, which of course, we all knew already! ugh, hadn't known re: tepid coffee and showers, now that's grim indeed. keep doing all the good things you're doing for yourself, linda; am sending white light your way to surround you to aid the doxil in shrinking those pesky nodes.

sisterhood & hugs,
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was somewhat 'good' about following the rules for the 5 days following a chemo infusion, and am happy to report that my skin and mouth and hands and feet all look normal! I wasn't nauseous and had no bowel issues. I had some overall body itchiness but no visible rash and now the itchiness is even gone. I tried to be 'good'; I left my grandson's Midget Football game on Sunday after the 3rd quarter when the sun shown through brightly and my face started to prickle and feel burn-y, even though I missed his interception in the 4th quarter!! Each day I only let myself trim back just a handful of things in my garden, showing incredible restraint for me. I took only cool showers and drank only cool coffee (YUK!) and ate all my food at room temperature. I answered only crucial emails and paced my typing to break it up into very short session. And I religiously brushed my teeth after I ate ANYTHING, and 'iced' and creamed my hands and feet off and on all the time. But tomorrow I think I can start inching back to my normal activities and cut back on this intense 'self-care', as the 1st 5 days are the ones where the restrictions are in place.

I know that the side effects are cumulative and with each subsequemnt infusion the risk of having an outbreak grows. So NEXT infusion I will really be a good girl. But I was 'good-ish', and wanted to let you all know I am doing great with this Doxil. As long as it WORKS!! (PLEASE let it work!!)

Cindy Bear
Posts: 560
Joined: Jul 2009

Linda.. I have a feeling you couldn't sit still if somebody bound, gagged and duct-taped you to a chair.... you're like a little energizer bunny aren't you. In my eyes, you're 10 feet tall and bulletproof... I'll be thinking of you tomorrow morning when I have my first cup of coffee.... Cheers!!!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

in the meantime, all of us who fancy we have any psychic abilities at all, are showering and enlosing you in an circle of white lights, that will hopefully go a along way in helping the doxil to do its job. so glad that there are hardly no side effects at all, and that you have been mainly good re: taking care of yourself. i do hear that it's cumulative, which means more intense self care, but it's good to know you're doing well with that. of course we want to know how well you're doing all along the way. sorry for the lukewarm coffee and showers--they they return to normal soon in between infustions.

keep up the icing and the creaming; almost sounds good enough to eat......

sistehood and gentle hugs,
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Not supposed to be typing as I got Doxil on Thursday, but wanted to share this. Doxil is famous for raising CA125 at first, but I was still freaked out when my CA125 went up from 134 to 171 at my 'nadir' oncology appointment following my 1st Doxil infusion. Just learned that my CA125 prior to my 2nd Doxil infusion was 155, so still higher than when I started Doxil but now at least going down. Both of these labs were AFTER my 1st Doxil but BEFORE my 2nd Doxil infusions. I have an October 28th 'between chemos nadir' oncology appointment and labs on 10/28 to see if I'll need more Nuelasta or anything; and get chemo next on Nov. 11th. So I'll let you all know how the CA125 fluctuates. I want anyone else getting Doxil not to be terrified if their CA125 climbs at first. That's very typical of this drug.

nempark
Posts: 579
Joined: Apr 2010

Thank God you are tolerating this very well. You are just a trooper and will conquer this monster. Keep up the good work. June

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My hospital billed my insurance company $30,800 for a single round of Doxil; and $17,000 for the Nuelasta shot I got the next day. My insurance negotiated that down and paid $24,000 for that single Doxil infusion, and $14,000 for the Nuelasta shot. So, even with the negotiated discount, my insurance is paying my oncology center $38,000 every 28 days for my treatments!! And that doesn't include anything else I might need; my CT/PET scans are billed at $22,000@!

I have very expensive private insurance, (with a $7,500 deductible that I pay every January with my first chemo infusion of the year) as I own my own business, and last year, even with NO surgeries, my insurance paid out $330,000 for my cancer treatments.

When I told my chemo oncologist what we were being billed he was SHOCKED. (He guessed $18,000 for the Doxil before I told him $30,800.) He said that they routinely mark up all pharmamcy costs 300%. Apparently, they try to get whatever the market will bear. Those with private insurance pay sooooooo much more than those on other group insurances. I am so very grateful that I have such good insurance and am able to pay the monthly premiums of over $1,000@. God help the uninsured!

I was just wondering if anyone else knows what they are billed for chemo and Nuelasta and CT/PET scans. I've never seen ANY discussion on TV by our legislators about how hospitals mark up their costs; politicians always seem to want to make the insurance companies out as the villans. We may not need the healthcare reform we GOT, but we sure as hell need healthcare reform in this country.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Linda,

This subject has been a pet peeve of mine since I had treatments and diagnosed in 2009. My husband and I are both self-employed, therefore, we pay for our own "individual" coverage thru Anthem. Our premiums for 3 (18 yr old daughter) are $500 per year.

I remember last year during the treatments, seeing the huge bills and wondering how this works. For instance, my hysterectomy stay in hospital for 2 days was billed to insurance $40K, insurance paid $22K; CT scan billed to insurance $4300 and insurance paid $950; chemo (taxol & carbo) billed to insurance $8100 and insurance paid $700; and oncologist visit 2 weeks ago for 4-month checkup billed insurance $463, and insurance paid $65. I have no co-pays so everything comes out of my pocket until I meet my high deductible.

According to a friend of mine who's in the health insurance industry, if we have no insurance and were going thru the above we'd possibly be billed double. For instance hysterectomy might be billed to me $80K and I would be expected to pay the full amount as an uninsured individual. With insurance, we get discounts, believe it or not!!!

You're correct, who could afford not to have insurance coverage. I see a few neighbors who are both unemployed and are taking the chance with 2 adults and 2 young kids to not have health insurance....just can't afford it. Takes one horrific accident and that hospital or medical bill will put that family in bankruptcy court...so very sad!

Something needs to be done about health insurance reform. Too many people walking around without it and when they go to hospital who pays,,,,,we the insured. Our insurance premiums this year increased $45 per month...that's just crazy!

Sure be interesting to see how this healthcare reform works out when most of the new changes hit in 3-4 years.

Jan

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

paris11
Posts: 132
Joined: Oct 2010

It is a bummer for sure. But try and take a deep breath and wait it out. You have three hellish weeks of worry ahead. Try to stay in the present. The verdict isn't in. The CA 125 may be nothing serious.

Prayers and love and

TWENTY MORE YEARS KIDDO !!!

Connie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sorry to hear the news on your CA125 was not going down...

Hang in Girlfriend...

Laurie

Always Hopeful
Posts: 234
Joined: May 2010

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

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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
Posts: 3
Joined: Nov 2010

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
Posts: 3
Joined: Nov 2010

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
Posts: 3
Joined: Nov 2010

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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
Posts: 234
Joined: May 2010

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

Peace and hope, JJ

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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's picture
Ro10
Posts: 1356
Joined: Jan 2009

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's picture
Kaleena
Posts: 998
Joined: Nov 2009

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
Posts: 234
Joined: May 2010

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

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

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's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

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's picture
Kaleena
Posts: 998
Joined: Nov 2009

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

LadybugBuz
Posts: 1
Joined: Nov 2010

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's picture
Kaleena
Posts: 998
Joined: Nov 2009

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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
Posts: 234
Joined: May 2010

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
Posts: 234
Joined: May 2010

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

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry the Doxil has given you such skin problems. I know Sharon and Diane talked about hand and feet problems, too. Sorry you will not be continuing it, as you felt pretty good while taking it. Plus the every four week treatment had to be better than every week of treatment you had before Doxil. I hope your body can take the Carboplatin infusions. I know you had trouble with counts before. I pray that the "big gun" will work for you. In peace and caring.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Started Doxil on Wednesday, then had Carbo on Thursday. I have another med. problem, Glaucoma in one eye so I can't take steroids as they raise eye pressure.. I do take basic Emend on day of carbo and two days later, lowish steroid, with no added Steroids and a diuretic to lower eye pressure.
Friday and Sat felt weakish but ok, kids and grandkids pooled meals and we ate together.
Today, Sunday felt nauseous,dizzy and sleepy. Hoping this will be all as I hoped to go to work tomorrow and have three one hour meetings planned.

Am using Eucerin and olive oil a lot on feet and hands, thanks Linda. Also showered with plain crocs so that soles of feet wouldn't be in warmish water, not as brave as Linda to have cold showers.

How long do post Doxil symptoms last, mainly nausea and sleepiness?

Thanks,
Sara Zipora

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