Carbo/Doxil- What do I need in my medicine cabinet?
'Starting second round of "major" chemo on Tuesday. I have heard lots of horror stories about Doxil and was wondering what I need to buy in preparation.(One lady told me satin sheets are a must) I have had the carbo, so I envision myself bald with creepy, itching rashy skin! LOL I'm wondering if my wigs will hurt my head, as I have heard the skin doesn't like pressure.
Any suggestions? (I already have 5 scripts for anti-nausea)
Thanks, Ginny
Comments
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Doxil
I had a rough time with doxil. Put ice packs on your hands and feet during infusion. Also when you get home, ice them when you can. I always had very itchy palms and ice helped more than anything. When you go to bed put a thick layer of aquaphor on your hands and wear white cotton gloves. This helps with the dryness. I wish you luck fellow teal warrior!!
Sending Blessings and Prayers your way.
Natalie0 -
Hiya Froggy
I have just found out that I am to have my second line treatment very soon - doxil. I had carbo/taxol last year and have only had 7 months remission. So now we are fellow "Doxil ladies" and we will have to keep each other up to date with our treatment.
Good luck and hang in there
Tina x0 -
Doxil - different for everyone, but
Hi Ginny,
I did 4 rounds of Doxil this summer. My best advice is to ice your hands and feet during infusions (Doxil company supplied me with these cute ice packs) and several times a day for about five days afterwards. This keeps the blood flow away from your hands and feet and reduces the hand/foot syndrome that can occur. My dr. told me to avoid all citrus and spicy foods for five days after, to take cool rather than hot showers and to cream up my hands and feet often. Oh, BTW... Doxil doesn't cause hair loss. If you do get a rash (I didn't) please call your Dr. My major complaint was pain in my feet and I could have avoided some of that if I had kept up with the icing. I actually had much less complaints with Doxil that carbo/taxol, didn't need satin sheets and could wear my wig. I wish you all the best because if you can tolerate Doxil, it's a drug that be used for as long as needed.
(((HUGS))) Maria0 -
Doxil
I'm also on Doxil (Carbo/Toxil didn't work for me), and so far I've only had one treatment (2nd to come on Tuesday). What I've noticed the most is lack of appetite and I do tire easily. I've also noticed a marked sensitivity to hot water, so I've kept my showers warm, which really bites because I just love hot showers!!!
Jane0 -
heat
My mom was told to be careful with heat and to be very careful not to burn her hands, especially for the first week or so after infusion. She uses an Ov-glove and a potholder (together) to get anything out of the oven. She also ices her hands, wrists, feet, and ankles during and after infusion, I think. With the doxil/carbo combination, she had about 4-5 days after last Friday's treatment where she was a bit nauseous. She was told to take the anti-nausea meds before she needs them. Don't wait until you get nauseous. If you want any other information, feel free to email me at home and I will get you in touch with my mom.
ejward@ameritech.net
Hugs,
Eileen0 -
I've had 2 Doxil rounds so far, and follow BonnieR's suggestionseward said:heat
My mom was told to be careful with heat and to be very careful not to burn her hands, especially for the first week or so after infusion. She uses an Ov-glove and a potholder (together) to get anything out of the oven. She also ices her hands, wrists, feet, and ankles during and after infusion, I think. With the doxil/carbo combination, she had about 4-5 days after last Friday's treatment where she was a bit nauseous. She was told to take the anti-nausea meds before she needs them. Don't wait until you get nauseous. If you want any other information, feel free to email me at home and I will get you in touch with my mom.
ejward@ameritech.net
Hugs,
Eileen
Wonderful Bonnie told me to get Eucerin cream (original only) and Instant Ocean (available at pet stores, to use as a foor soak) and to brush teeth with baking soda and a soft toothbrush every time I eat. & of course, to ICE. Were any of you asked to sign up for input directly from Doxil? I was and received a big kit of 'goodies' from Doxil and also receive a phone call from Doxil every week to check on how I'm doing and they courage me to keep icing and creaming, etc. Please ask your oncologist about that. Doxil provides a big box with sunscreen and a hat, temperature gauges for your bath water, creams, wash sprays and ointment, a water bottle, shoe insert pads, etc. I also got alcohol-free flouride mouth rinse and a bunch of those fuzzy chennile (sp?) socks and some loose baggy pants and tops to wear the first few days.
Bonnie. I miss you.0 -
Thanks Lindalindaprocopio said:I've had 2 Doxil rounds so far, and follow BonnieR's suggestions
Wonderful Bonnie told me to get Eucerin cream (original only) and Instant Ocean (available at pet stores, to use as a foor soak) and to brush teeth with baking soda and a soft toothbrush every time I eat. & of course, to ICE. Were any of you asked to sign up for input directly from Doxil? I was and received a big kit of 'goodies' from Doxil and also receive a phone call from Doxil every week to check on how I'm doing and they courage me to keep icing and creaming, etc. Please ask your oncologist about that. Doxil provides a big box with sunscreen and a hat, temperature gauges for your bath water, creams, wash sprays and ointment, a water bottle, shoe insert pads, etc. I also got alcohol-free flouride mouth rinse and a bunch of those fuzzy chennile (sp?) socks and some loose baggy pants and tops to wear the first few days.
Bonnie. I miss you.
Thanks Linda,
Do you ice while having the infusion? I asked my chemo nurses and they said I don't need to do that. It seems everybody does! I'm confused. Ginny0 -
(bumping, sorry I don't knowfroggy1 said:Thanks Linda
Thanks Linda,
Do you ice while having the infusion? I asked my chemo nurses and they said I don't need to do that. It seems everybody does! I'm confused. Ginny
(bumping, sorry I don't know anything about Doxil yet!)0 -
Thank youlindaprocopio said:I've had 2 Doxil rounds so far, and follow BonnieR's suggestions
Wonderful Bonnie told me to get Eucerin cream (original only) and Instant Ocean (available at pet stores, to use as a foor soak) and to brush teeth with baking soda and a soft toothbrush every time I eat. & of course, to ICE. Were any of you asked to sign up for input directly from Doxil? I was and received a big kit of 'goodies' from Doxil and also receive a phone call from Doxil every week to check on how I'm doing and they courage me to keep icing and creaming, etc. Please ask your oncologist about that. Doxil provides a big box with sunscreen and a hat, temperature gauges for your bath water, creams, wash sprays and ointment, a water bottle, shoe insert pads, etc. I also got alcohol-free flouride mouth rinse and a bunch of those fuzzy chennile (sp?) socks and some loose baggy pants and tops to wear the first few days.
Bonnie. I miss you.
What great advice. I haven't even started it yet but I feel really positive about it. I hope they do a "gift pack!!" here in the UK? (Its called Caelyx here) I have already bought some nice foot creams etc.
Tina0 -
OOps, one more thingTina Brown said:Thank you
What great advice. I haven't even started it yet but I feel really positive about it. I hope they do a "gift pack!!" here in the UK? (Its called Caelyx here) I have already bought some nice foot creams etc.
Tina
I forgot to mention to wear loose fitting clothes while you're around the house. I went "commando" and wore loose, soft PJs and Ts. My Dr. told me that it's much easier to prevent rashes/cracking feet etc. than it is to treat them. Enjoy those nice foot creams.
(((HUGS))) Maria0 -
mariaMwee said:OOps, one more thing
I forgot to mention to wear loose fitting clothes while you're around the house. I went "commando" and wore loose, soft PJs and Ts. My Dr. told me that it's much easier to prevent rashes/cracking feet etc. than it is to treat them. Enjoy those nice foot creams.
(((HUGS))) Maria
Is this for the whole time or for five days or so after? Thanks, Ginny0 -
Doxil
Hi Ginny, I did 8 infusions of doxil last year. I did follow all the instructions given by Bonnie and others as much as possible. But, no one mentioned the walking and rubbing on the feet (either that or I wasn't paying attentiont to that part as much!). I was in very comfortable berkie style shoes with a divider in the middle, and after 4 infusions or so the inside of my second toe, became completely inflamed and blistered. When I shitched to fur lined crocs, they were the best and didn't give me any problems. I wish I had cut way back on my walking and taken it a bit more easy in the beginning. I did have many blisters on my feet, but not until after 6 infusiosn or so. I did two more, and then took a break. It took a few months, but they did clear up nicely. The doxil held my cancer at bay for the whole year. I did add in some carbo with the doxil, for the last few infusions, which really gave it a boost.
Wishing all you ladies the very best!!
kathleen❥0 -
Ginnyfroggy1 said:maria
Is this for the whole time or for five days or so after? Thanks, Ginny
I was told to be extra careful for the first five days, but I found that I had to pamper my feet and hands with extra lotion the whole time. I think you'll have to see how you react and let that be your guide. Good luck and best of all I hope this cocktail works wonders for you.
Maria0 -
I ice DURING my Doxil infusion.kayandok said:Doxil
Hi Ginny, I did 8 infusions of doxil last year. I did follow all the instructions given by Bonnie and others as much as possible. But, no one mentioned the walking and rubbing on the feet (either that or I wasn't paying attentiont to that part as much!). I was in very comfortable berkie style shoes with a divider in the middle, and after 4 infusions or so the inside of my second toe, became completely inflamed and blistered. When I shitched to fur lined crocs, they were the best and didn't give me any problems. I wish I had cut way back on my walking and taken it a bit more easy in the beginning. I did have many blisters on my feet, but not until after 6 infusiosn or so. I did two more, and then took a break. It took a few months, but they did clear up nicely. The doxil held my cancer at bay for the whole year. I did add in some carbo with the doxil, for the last few infusions, which really gave it a boost.
Wishing all you ladies the very best!!
kathleen❥
I bring along a little 6-pack cooler with my 4 ice packs and 4 washrags that I wrap around them. (Plus my yogurt, water bottle, snacks, HA!) The way I ice the soles of my feet is to rock the chemo lounger back to the WAY back position, then bring my knees up in a very unlady-like way and put 1 of the ice packs between my feet. (It sounds harder to do than it is; I'm totally comfortable in that position with the lounger rocked all the way back, but I have done yoga since I was 14 so am flexible.) Then I put 1 ice pack on each arm of the chair and rest my palms on those. It sounds like contorsions, but if you try it I'm sure you'll see how do-able it is.
I try to remember to ice at least once a day even after the 5 days. I have 1 more trick to share. I keep a box of baking soda and a small plastic spoon in each bathroom. Every time I go to the bathroom (which is OFTEN, as you are supposed to HYDRATE a LOT on Doxil to prevent constipation), I scoop up a handful of water into my mouth and spoon in a little baking soda and swish that around my gums good while I'm peeing, then spit it out before I wash my hands. I don't want to get mouth sores and I think repeating this exercise all day helps. I also use a non-alcohol flouride rinse after I brush my teeth before bed.
On the constipation: you may want to take a couple stool softeners the night before chemo and make sure you hydrate constantly. I swear for me that it's because I can't drink HOT COFFEE for 5 days that my system gets thrown off, because as soon as the 5 days are up and I'm back to drinking my coffee at a civilized temperature, the constipation is over! The Doxil folks that call me told me to use stool softeners all the time on Doxil, but so far I only need them the first 5 days then I'm back to normal.
I feel so GOOD on Doxil after the 1st week, So good that I hope I can stay on it and most of all, that it is working. I'll know better after my next labs (Thursday) whether Doxil is able to drop my CA125. The 1st Doxil infusion my CA125 went up, so Thursday's labs will let me know whether the 2nd Doxil infusion brought it back down.0 -
Hi Lindalindaprocopio said:I ice DURING my Doxil infusion.
I bring along a little 6-pack cooler with my 4 ice packs and 4 washrags that I wrap around them. (Plus my yogurt, water bottle, snacks, HA!) The way I ice the soles of my feet is to rock the chemo lounger back to the WAY back position, then bring my knees up in a very unlady-like way and put 1 of the ice packs between my feet. (It sounds harder to do than it is; I'm totally comfortable in that position with the lounger rocked all the way back, but I have done yoga since I was 14 so am flexible.) Then I put 1 ice pack on each arm of the chair and rest my palms on those. It sounds like contorsions, but if you try it I'm sure you'll see how do-able it is.
I try to remember to ice at least once a day even after the 5 days. I have 1 more trick to share. I keep a box of baking soda and a small plastic spoon in each bathroom. Every time I go to the bathroom (which is OFTEN, as you are supposed to HYDRATE a LOT on Doxil to prevent constipation), I scoop up a handful of water into my mouth and spoon in a little baking soda and swish that around my gums good while I'm peeing, then spit it out before I wash my hands. I don't want to get mouth sores and I think repeating this exercise all day helps. I also use a non-alcohol flouride rinse after I brush my teeth before bed.
On the constipation: you may want to take a couple stool softeners the night before chemo and make sure you hydrate constantly. I swear for me that it's because I can't drink HOT COFFEE for 5 days that my system gets thrown off, because as soon as the 5 days are up and I'm back to drinking my coffee at a civilized temperature, the constipation is over! The Doxil folks that call me told me to use stool softeners all the time on Doxil, but so far I only need them the first 5 days then I'm back to normal.
I feel so GOOD on Doxil after the 1st week, So good that I hope I can stay on it and most of all, that it is working. I'll know better after my next labs (Thursday) whether Doxil is able to drop my CA125. The 1st Doxil infusion my CA125 went up, so Thursday's labs will let me know whether the 2nd Doxil infusion brought it back down.
Thank-you Linda I have just read your post and It is great to get the "heads up" on this before I start. Your ideas and tips will be most useful and I may even print them off. I've got to go back on chemo - caelyx and I think in the US it's called Doxil. My chemo nurse knows nothing about icing the hands and feet, but I have read somewhere about hand/foot syndrome. I have already bought some nice creams and soothing foot lotions.
She also said I would lose my hair. Is this right? Do you lose your hair on Doxil? I am pleased that you are feeling so well on it and I hope your numbers drop soon.
Tina x0 -
Thanks, Lindalindaprocopio said:I ice DURING my Doxil infusion.
I bring along a little 6-pack cooler with my 4 ice packs and 4 washrags that I wrap around them. (Plus my yogurt, water bottle, snacks, HA!) The way I ice the soles of my feet is to rock the chemo lounger back to the WAY back position, then bring my knees up in a very unlady-like way and put 1 of the ice packs between my feet. (It sounds harder to do than it is; I'm totally comfortable in that position with the lounger rocked all the way back, but I have done yoga since I was 14 so am flexible.) Then I put 1 ice pack on each arm of the chair and rest my palms on those. It sounds like contorsions, but if you try it I'm sure you'll see how do-able it is.
I try to remember to ice at least once a day even after the 5 days. I have 1 more trick to share. I keep a box of baking soda and a small plastic spoon in each bathroom. Every time I go to the bathroom (which is OFTEN, as you are supposed to HYDRATE a LOT on Doxil to prevent constipation), I scoop up a handful of water into my mouth and spoon in a little baking soda and swish that around my gums good while I'm peeing, then spit it out before I wash my hands. I don't want to get mouth sores and I think repeating this exercise all day helps. I also use a non-alcohol flouride rinse after I brush my teeth before bed.
On the constipation: you may want to take a couple stool softeners the night before chemo and make sure you hydrate constantly. I swear for me that it's because I can't drink HOT COFFEE for 5 days that my system gets thrown off, because as soon as the 5 days are up and I'm back to drinking my coffee at a civilized temperature, the constipation is over! The Doxil folks that call me told me to use stool softeners all the time on Doxil, but so far I only need them the first 5 days then I'm back to normal.
I feel so GOOD on Doxil after the 1st week, So good that I hope I can stay on it and most of all, that it is working. I'll know better after my next labs (Thursday) whether Doxil is able to drop my CA125. The 1st Doxil infusion my CA125 went up, so Thursday's labs will let me know whether the 2nd Doxil infusion brought it back down.
Thanks Linda for all your helpful information. I still do know not why my group does not encourage icing.
I had my first infusion today. It was pretty rough. They hooked me up and 8 this morning and I went until 4. (I had Carbo, too)
They said they do the first one more slowly, as to avoid a reaction, and the next one will be faster. I really felt off during the infusion, which has never happened before.
The next few days will tell the tale. I usally don't do real well with Carbo, now with the Doxil it will be interesting!
They did give me that Doxil box, but there were not ice packs in there.0 -
Here's the "Ice During Infusion" recommendation from Doxilfroggy1 said:Thanks, Linda
Thanks Linda for all your helpful information. I still do know not why my group does not encourage icing.
I had my first infusion today. It was pretty rough. They hooked me up and 8 this morning and I went until 4. (I had Carbo, too)
They said they do the first one more slowly, as to avoid a reaction, and the next one will be faster. I really felt off during the infusion, which has never happened before.
The next few days will tell the tale. I usally don't do real well with Carbo, now with the Doxil it will be interesting!
They did give me that Doxil box, but there were not ice packs in there.
You may want to print out and bring this recommendation to your oncology nurse, direct from the Doxil website:
http://www.doxil.com/managing_side_effect.html
I think Doxil's pie chart makes a strong argument for icing during your infusion. My chemo lounge also does not routinely ice during Doxil infusion, but I gave them a print out of this at my last infusion, trying to get them to change their procedure for everyone on Doxil. Meanwhile, I bring my own ice packs. There were no ice packs in my box from Doxil either, but I picked up gel ones for $1@ at a discount store. You don't need anything fancy. I just wrap each frozen pack in a washrag so it isn't TOO cold against my skin.
I was already bald from taxol when I started Doxil, so I have no idea whether it would have made me bald. But my eyebrows and lashes and pubic hair have grown back while on Doxil and I have thin patchy hair coming in on my head. So my guess is that, although my hair would have thinned perhaps, I don't think Doxil would have made me bald like taxol does. So far (2 rounds in) I feel GOOD on Doxil, not fatigued like on taxol and better digestion. After the 5 days of 'self-care' following infusion, I garden and go to football games and live like a healthy woman. (OH! That reminds me! No typing or sex for the 5 days after infusion or other 'friction' causing activities!)0 -
Thanks Lindalindaprocopio said:Here's the "Ice During Infusion" recommendation from Doxil
You may want to print out and bring this recommendation to your oncology nurse, direct from the Doxil website:
http://www.doxil.com/managing_side_effect.html
I think Doxil's pie chart makes a strong argument for icing during your infusion. My chemo lounge also does not routinely ice during Doxil infusion, but I gave them a print out of this at my last infusion, trying to get them to change their procedure for everyone on Doxil. Meanwhile, I bring my own ice packs. There were no ice packs in my box from Doxil either, but I picked up gel ones for $1@ at a discount store. You don't need anything fancy. I just wrap each frozen pack in a washrag so it isn't TOO cold against my skin.
I was already bald from taxol when I started Doxil, so I have no idea whether it would have made me bald. But my eyebrows and lashes and pubic hair have grown back while on Doxil and I have thin patchy hair coming in on my head. So my guess is that, although my hair would have thinned perhaps, I don't think Doxil would have made me bald like taxol does. So far (2 rounds in) I feel GOOD on Doxil, not fatigued like on taxol and better digestion. After the 5 days of 'self-care' following infusion, I garden and go to football games and live like a healthy woman. (OH! That reminds me! No typing or sex for the 5 days after infusion or other 'friction' causing activities!)
Thanks for all the info. I am getting Carbo, too, so I think my wigs are going to have to be taken out of storage. My hair is all grown in now:( I think the Carbo causes the hair loss. When on was on maintenance taxol, everything came back.... I hate having no eyebrows and eyelashes, almost more than no headhair!
Ginny0 -
Thank goodness for thisfroggy1 said:Thanks Linda
Thanks for all the info. I am getting Carbo, too, so I think my wigs are going to have to be taken out of storage. My hair is all grown in now:( I think the Carbo causes the hair loss. When on was on maintenance taxol, everything came back.... I hate having no eyebrows and eyelashes, almost more than no headhair!
Ginny
Thank goodness for this info. I am supposed to be starting on doxil either in tandem with a clinical trial drug if I get into the trial or alone, my oncology doc mentioned nothing about the icing, just about possible heart issues.0 -
everyone different
Ginny,
I have had 4 doxil infusions (higher dosage) on this clinical trial. I have had slight itchy hands and feet. I do use lotion but no ice. So far have not had a need to. Have balm in the medicine cabinet if I need it.
First infusion I had indegestion. My biggest issue has been mouth sores. After 2nd infusion had them along back of tongue and 3rd infusion along left side of throat. I could not eat much either time and it occured both times two weeks after infusions and lasted about 10 days.
I am now into my 2nd week after 4th infusion. I am rinsing my mouth out with baking soda and salt after I eat. Lots of water and try and watch what I eat and drink. You don't want to rinse with the salt after you get the mouth sores (just ask me!) ;0)
I too wear loose fitting clothes. Sports bra, keep shoes off in house, no jeans, etc. But when I go out I wear what I want if I am not out too long.
And I have not lost my hair since carb/taxol but it sure is thinner. Hope that helps.
Libby0
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