Tell me how to cope with Doxil

wholfmeister

Hi, everyone!

I've had a pleasant few months on Gemzar.  It gave me absolutely no side effects except tiredness/fatigue.  Unfortunately, it was not giving my cancer a hard time, either!  So, tomorrow, I start Doxil. 

I am surprised at the level of anxiety I am feeling, because I have read many posts about the nasty side effects.  I've been on chemotherapy for 2 1/2 years, but except for losing my hair, I haven't had any bad side effects.  Oh, yes, I have the chemo brain, and minimal tingling in my toes, and nausea/vomiting every few weeks, and I'm tired all the time, but nothing really bad or intolerable.  I haven't missed work except for appointment days.  But Doxil scares me! 

I would LOVE to hear from women about how they handled the side effects.  What tips do you have for minimizing/reducing the risk/avoiding the bad stuff?

Thanks!

ovarian_support

side effects

My mother is currently on doxil, along with an experimental drug.  There are some side effects we are sure are the doxil and some we are not.  Your doctor should check you for any heart problems, but it was my understanding that the lipid they used to encapsilate it took care of that, but they still check for it with a mugga.  My mother did get the blisters on the hand, and a rash on her body.  For her last treatment she tried using ice packs on her hands and afterwards did not notice any new blisters.  She also uses 'udderly smooth' or 'moo cream' on her hands and body for the rash and does not wear anything that constricts her body.  Very soft cloths, no elastic.  We didn't know about the body rash at first, we just thought it was odd that she was getting this red bumpy rash and at first only on her right leg (my mom typically sleeps on her right side).  Then it spread to the waist line and bra line.  Her substitute oncologist didn't know what it was and it was only after some online research we found information on the rash and what to do to prevent/treat it.  At home my mom wears a loose dress and we she goes out she wears loose clothes but still changes into the dress we she gets home.  No hot showers only warm, no loofas instead soft wash cloths.  The idea is not to agrivate the skin, the rash only seemed to appear were there was some friction.  These are the only side effects we can attribute soley to the doxil, but if you have any specific side effect you want to talk about please let me know, my mom seems to get all side effects so we got very good at finding ways to treat them 

lovesanimals

ovarian_support said:

side effects

My mother is currently on doxil, along with an experimental drug.  There are some side effects we are sure are the doxil and some we are not.  Your doctor should check you for any heart problems, but it was my understanding that the lipid they used to encapsilate it took care of that, but they still check for it with a mugga.  My mother did get the blisters on the hand, and a rash on her body.  For her last treatment she tried using ice packs on her hands and afterwards did not notice any new blisters.  She also uses 'udderly smooth' or 'moo cream' on her hands and body for the rash and does not wear anything that constricts her body.  Very soft cloths, no elastic.  We didn't know about the body rash at first, we just thought it was odd that she was getting this red bumpy rash and at first only on her right leg (my mom typically sleeps on her right side).  Then it spread to the waist line and bra line.  Her substitute oncologist didn't know what it was and it was only after some online research we found information on the rash and what to do to prevent/treat it.  At home my mom wears a loose dress and we she goes out she wears loose clothes but still changes into the dress we she gets home.  No hot showers only warm, no loofas instead soft wash cloths.  The idea is not to agrivate the skin, the rash only seemed to appear were there was some friction.  These are the only side effects we can attribute soley to the doxil, but if you have any specific side effect you want to talk about please let me know, my mom seems to get all side effects so we got very good at finding ways to treat them 

Hi

I don't have any personal experience with doxil but please know that I'm sending lots of prayers your way that you have minimal side-effects with the drug.

Kelly

Alexandra

Dear Merrily

I haven't had Doxil. I hope it works for you with no unpleasant side effects.

Best wishes,

Alexandra

NoTimeForCancer

I can't comment on doxil but

I can't comment on doxil but I have seen posts on it so maybe a search of the forums will help with some answers.  I hope it works for you.

Cindy Bear

doxil

Hello. Sorry I don't have any first hand advice for you but there is a web site.. Doxil.com.. you might find some helpful tips /suggestions there if you haven't already tried it.

Good luck to you!

scatsm

haven't had Doxil...yet

but I think it's next up on the list for me.

I will now think of it as hummingbird food forever more (as per your FB post)  and that will ease the fear....I hope your infusion had few nasty surprises. Keep us informed!

xoxo Susan

 

wholfmeister

scatsm said:

haven't had Doxil...yet

but I think it's next up on the list for me.

I will now think of it as hummingbird food forever more (as per your FB post)  and that will ease the fear....I hope your infusion had few nasty surprises. Keep us informed!

xoxo Susan

 

Susan!

The infusion was uneventful.  My cancer center staff is great.  My veins are not good, so we usually have some drama getting the IV in and running.  But the nurses really know what they are doing.  Since this was my first dose of Doxil, my nurse actually pulled up a stool and just chatted for the first 15 minutes to be sure I didn't have a reaction.  I'm a little tired today, but nothing out of the ordinary.  So far, so good!

i can't post a photo of the Doxil until I am at a real computer.  It is a nice red color, like hummingbird nectar!

Hope everyone enjoys the start of college football! Go, Buckeyes!

 

lovesanimals

wholfmeister said:

Susan!

The infusion was uneventful.  My cancer center staff is great.  My veins are not good, so we usually have some drama getting the IV in and running.  But the nurses really know what they are doing.  Since this was my first dose of Doxil, my nurse actually pulled up a stool and just chatted for the first 15 minutes to be sure I didn't have a reaction.  I'm a little tired today, but nothing out of the ordinary.  So far, so good!

i can't post a photo of the Doxil until I am at a real computer.  It is a nice red color, like hummingbird nectar!

Hope everyone enjoys the start of college football! Go, Buckeyes!

 

Uneventful is good!

And sounds like you have really good nurses.  I hope the side effects continue to be minimal and that the Doxil kicks your cancer's butt to the curb!

Kelly

anam2012

wholfmeister said:

Susan!

The infusion was uneventful.  My cancer center staff is great.  My veins are not good, so we usually have some drama getting the IV in and running.  But the nurses really know what they are doing.  Since this was my first dose of Doxil, my nurse actually pulled up a stool and just chatted for the first 15 minutes to be sure I didn't have a reaction.  I'm a little tired today, but nothing out of the ordinary.  So far, so good!

i can't post a photo of the Doxil until I am at a real computer.  It is a nice red color, like hummingbird nectar!

Hope everyone enjoys the start of college football! Go, Buckeyes!

 

I'm currently on Doxil

I'm from the uterine board and was diagnosed with UPSC stage 4 in October 2012.  I have been through the carbo/taxol regiment twice. My CA 125 started rising very quickly after the second round of carbo/taxol. So now I am being treated with Doxil for my second recurrence.  I've only had two infusions so far so I am still sorting out side effects.  Fatigue is the most prominent and seems to have the most impact on my life currently.  I'm used to being more active, so this is a little frustrating to me. My stomach feels very uncomfortable, like it is producing excess acid so I have been taking Compazine regularly which helps. I don't have much appetite and I eat small amounts at meals.  I was told no more long walks, I love to walk, no activities that create friction on your skin.  I have been using cold packs on my feet if I spend too much time standing or walking, it helps cool them and reduces swelling.  The upside is my hair is still growing back in from my last carbo/taxol treatment and neuropathy is not as bad. 

Please feel free to ask questions, I'm a newbie to Doxil, but I will try to answer if I can.

Ana

wholfmeister

anam2012 said:

I'm currently on Doxil

I'm from the uterine board and was diagnosed with UPSC stage 4 in October 2012.  I have been through the carbo/taxol regiment twice. My CA 125 started rising very quickly after the second round of carbo/taxol. So now I am being treated with Doxil for my second recurrence.  I've only had two infusions so far so I am still sorting out side effects.  Fatigue is the most prominent and seems to have the most impact on my life currently.  I'm used to being more active, so this is a little frustrating to me. My stomach feels very uncomfortable, like it is producing excess acid so I have been taking Compazine regularly which helps. I don't have much appetite and I eat small amounts at meals.  I was told no more long walks, I love to walk, no activities that create friction on your skin.  I have been using cold packs on my feet if I spend too much time standing or walking, it helps cool them and reduces swelling.  The upside is my hair is still growing back in from my last carbo/taxol treatment and neuropathy is not as bad. 

Please feel free to ask questions, I'm a newbie to Doxil, but I will try to answer if I can.

Ana

Thanks, Ana!

You are a month ahead of me. I guess we'll learn together!

i can't imagine giving up long walks! That is my main exercise...several miles a day! It's so good for my mental health!

I'll be thinking about you! Stay strong!

JoWin615

Just had my 4th Doxil treatment

I'll give it to you straight: Compared to the 6 Taxol/Carbo, and the 15 Gemzar/Carbo treatments I've had, this Doxil/Carbo has been the roughest. Maybe it's the cumulative effects, maybe it's my age (71), but I was not expecting it to be this hard. I am not having any blistering or skin rashes though - just general tenderness of my hands and feet, and, as Ana said, queasiness and stomach discomfort. There are two major differences in the side effects: 1) the "bad days" keep popping back up, so that it's really 10 or so days you are left feeling like cr** instead of 3 or 4, and 2) I thought I could ignore the "no more long walks" rule. Big mistake. Much pain! Walking my 10 miles a week was my form of meditation, and now that I cannot do that, it is VERY upsetting. 

I did not intend to plummet us all into the depths of dispair here, and thanks for the opportunity to vent! I feel sure, Wholfmeister, that you will handle Doxil just fine. I think it probably helps to have work as a distraction. I am retired, and have little to do but sit around and whine!

wholfmeister

JoWin615 said:

Just had my 4th Doxil treatment

I'll give it to you straight: Compared to the 6 Taxol/Carbo, and the 15 Gemzar/Carbo treatments I've had, this Doxil/Carbo has been the roughest. Maybe it's the cumulative effects, maybe it's my age (71), but I was not expecting it to be this hard. I am not having any blistering or skin rashes though - just general tenderness of my hands and feet, and, as Ana said, queasiness and stomach discomfort. There are two major differences in the side effects: 1) the "bad days" keep popping back up, so that it's really 10 or so days you are left feeling like cr** instead of 3 or 4, and 2) I thought I could ignore the "no more long walks" rule. Big mistake. Much pain! Walking my 10 miles a week was my form of meditation, and now that I cannot do that, it is VERY upsetting. 

I did not intend to plummet us all into the depths of dispair here, and thanks for the opportunity to vent! I feel sure, Wholfmeister, that you will handle Doxil just fine. I think it probably helps to have work as a distraction. I am retired, and have little to do but sit around and whine!

JoWin

I appreciate your honesty. How many doses of Doxil have you had so far?  I think you are right about the cumulative effects.  Five days after my first dose, and all is well.

No long walks is going to SUCK! Like you, walking is my mental health booster.  My husband heard the part about no hot water, so he has been doing the dinner dishes. Yeah!

Don't worry about causing dispair! If we can't expect honest answers from our Teal Sisters, we really are in big trouble!

anam2012

wholfmeister said:

JoWin

I appreciate your honesty. How many doses of Doxil have you had so far?  I think you are right about the cumulative effects.  Five days after my first dose, and all is well.

No long walks is going to SUCK! Like you, walking is my mental health booster.  My husband heard the part about no hot water, so he has been doing the dinner dishes. Yeah!

Don't worry about causing dispair! If we can't expect honest answers from our Teal Sisters, we really are in big trouble!

I agree JoWin and Wholfmeister

It helps to know what others are experiencing, we know we are not alone through this journey.  We are all different and will not experience the exact same symptoms, but it does help to know. Thank you both for sharing.  No walks and having to nap during the day is new to me, I don't like it, but if it means the Doxil is killing cancer so be it.

are you both receiving full dose?  I received 66 mg my first time and 80 mg the second time. I ask because the second time has affected me quite a bit more.  Hoping my next CA 125 shows a big drop. Next treatment is September 15th.

JoWin615

anam2012 said:

I agree JoWin and Wholfmeister

It helps to know what others are experiencing, we know we are not alone through this journey.  We are all different and will not experience the exact same symptoms, but it does help to know. Thank you both for sharing.  No walks and having to nap during the day is new to me, I don't like it, but if it means the Doxil is killing cancer so be it.

are you both receiving full dose?  I received 66 mg my first time and 80 mg the second time. I ask because the second time has affected me quite a bit more.  Hoping my next CA 125 shows a big drop. Next treatment is September 15th.

Doxil dose

I'm not sure what dose I'm getting, but I'll ask before my 5th treatment on 9/22. My CA 125 is coming back down slowly. 

Here's a walking update: yesterday I was feeling so much better, that I went for a VERY leisurely 1-mile walk. It went fine! it wasn't much, but it gave my mental state a much-needed boost. 

wholfmeister

anam2012 said:

I agree JoWin and Wholfmeister

It helps to know what others are experiencing, we know we are not alone through this journey.  We are all different and will not experience the exact same symptoms, but it does help to know. Thank you both for sharing.  No walks and having to nap during the day is new to me, I don't like it, but if it means the Doxil is killing cancer so be it.

are you both receiving full dose?  I received 66 mg my first time and 80 mg the second time. I ask because the second time has affected me quite a bit more.  Hoping my next CA 125 shows a big drop. Next treatment is September 15th.

Good question

I got 80 mg for my first dose.  The product insert says for ovarian cancer, give 50 mg per meter squared.  I believe that is the body surface area.  If you google, you will find body surface calculators, based on height and weight.  I am not a little girl...my body surface area is about 2 square meters.  So I guess a full dose for me would be 100.  I will be interested to ask when I see the doctor right before my next dose, September 26.

Photo queen

wholfmeister said:

Good question

I got 80 mg for my first dose.  The product insert says for ovarian cancer, give 50 mg per meter squared.  I believe that is the body surface area.  If you google, you will find body surface calculators, based on height and weight.  I am not a little girl...my body surface area is about 2 square meters.  So I guess a full dose for me would be 100.  I will be interested to ask when I see the doctor right before my next dose, September 26.

Doxil

I too had 6. Rounds of Doxil and Avastin at the same time.  They gave me a kit in the oncologist office that contained things such as a temperature gauge for bath water so you knew it wasn't to hot, a hat with a long tail to keep sun off your neck, sunblock and a big jar of Udderly Smooth skin cream which is really cheap at Wal Mart and I practically lived in the jar.  No real problems with Doxil that I can remember except for the usual fatigue and just off feeling of knowing you are on chemo.  I believe that Doxil is one that makes your counts go up at first but then come down. They usually do some type of heart test before you start checking your ejection rate and I know there is a lifetime dose that you can receive.  Hope all goes well for you.  It did not get me to NED but did keep me fairly stable for 6 months 

anam2012

wholfmeister said:

Good question

I got 80 mg for my first dose.  The product insert says for ovarian cancer, give 50 mg per meter squared.  I believe that is the body surface area.  If you google, you will find body surface calculators, based on height and weight.  I am not a little girl...my body surface area is about 2 square meters.  So I guess a full dose for me would be 100.  I will be interested to ask when I see the doctor right before my next dose, September 26.

Hi ladies, goodbye Doxil for me

Yesterday was to have been my third Doxil treatment, but found out my marker went form 1170 to 2650. My oncologoligist recommended we change back to carbo/taxol and Avastin.  It appear that the symptoms I was experiencing were from the cancer activity and not necessarily the Doxil treatment.  It was dissapointing but at the same time a relief, don't know what the future brings but hopefully the tried and true treatment will bring my numbers down and maybe keep them there this time around.  

I wish you luck with your continued treatment, my prayers are with you all.

wholfmeister

anam2012 said:

Hi ladies, goodbye Doxil for me

Yesterday was to have been my third Doxil treatment, but found out my marker went form 1170 to 2650. My oncologoligist recommended we change back to carbo/taxol and Avastin.  It appear that the symptoms I was experiencing were from the cancer activity and not necessarily the Doxil treatment.  It was dissapointing but at the same time a relief, don't know what the future brings but hopefully the tried and true treatment will bring my numbers down and maybe keep them there this time around.  

I wish you luck with your continued treatment, my prayers are with you all.

So sorry!

I'm sorry your cancer seems to be progressing inspite of the Doxil.  Your CA 125 is so much higher than mine!  I hope the change in treatment will bring about the demise of your symptoms and of your cancer!  I appreciate your prayers for me, and you will be in mine!