Alleviating & controlling DOXIL side effects ; what I've learned
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!
Comments
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linda, wishing you the very best of luck and more
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,
maggie0 -
Comfort from the Scriptures For all of you!!!!
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 all0 -
Linda.....I am smiling!
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!
Karen0 -
Disobeying the "DO NOT TYPE" order already!! (quick report)Kaleena said:Sending my best to you,
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
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.0 -
Good ole Doxillindaprocopio said:Disobeying the "DO NOT TYPE" order already!! (quick report)
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.
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!
Diane0 -
it's always so great to get your posts, linda, especiallylindaprocopio said:Disobeying the "DO NOT TYPE" order already!! (quick report)
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.
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,
maggie0 -
5 days after Doxil : TOMORROW the cold coffee & showers are overmaggie_wilson said:it's always so great to get your posts, linda, especially
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
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!!)0 -
"Somewhat goodish"lindaprocopio said:5 days after Doxil : TOMORROW the cold coffee & showers are over
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!!)
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!!!0 -
may the powers that be insure that the doxil WORKS!!!lindaprocopio said:5 days after Doxil : TOMORROW the cold coffee & showers are over
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!!)
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,
maggie0 -
CA125 went UP to 171 Round 1, then down to 155 Round 2.maggie_wilson said:may the powers that be insure that the doxil WORKS!!!
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
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.0 -
Lindalindaprocopio said:CA125 went UP to 171 Round 1, then down to 155 Round 2.
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.
Thank God you are tolerating this very well. You are just a trooper and will conquer this monster. Keep up the good work. June0 -
Crazy high cost of Doxil & Nuelasta!!nempark said:Linda
Thank God you are tolerating this very well. You are just a trooper and will conquer this monster. Keep up the good work. June
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.0 -
Insurancelindaprocopio said:Crazy high cost of Doxil & Nuelasta!!
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.
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.
Jan0 -
My CA-125 from yesterday's lab was 190.4, up from 155.jazzy1 said:Insurance
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
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.0 -
Bummer - Oh Linda,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.
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 !!!
Connie0 -
Linda sending hugs and prayers your waylindaprocopio 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.
Sorry to hear the news on your CA125 was not going down...
Hang in Girlfriend...
Laurie0 -
Take a deep breathlindaprocopio 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.
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, JJ0
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