Tell me how to cope with Doxil

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 

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

Best wishes,

Alexandra

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!

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 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

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 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!

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.

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.

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.