I am currently going to start Doxil after I get an echocardiogram. I know one of the side effects is damage to the heart as well as many other problems. I was wondering if anyone is this support community has been on Doxil and if they experienced any horrific side effects.
I recently , after being on carboplatin for many months, had an allergic reaction soon after the chemo was infused. My Oncologist was in the office at the time.... I went into anaphalactic shock.......breathing difficulties, congestion and itching of the palms of the hands and soles of the feet.
My body rejected the chemo. I was immediately admistered IV Benedryl and another drug which saved my life. It was the worse thing I have experienced so far with chemo. I have been on chemo over three years and I think my body has had enough and Just Said No. Has anyone else had this happen. I would love to hear from you. annejulia
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Doxil
- By annejulia
- Posted September 19, 2009 at 11:01 am · 28 replies
- In Caregivers and family members
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Explore topics in this discussion:
Taxol Cancer Surgery Advil Dexamethasone Burns Blisters Taxotere Anxiety Rashes Oxycodone Pain Benadryl Carboplatin Tagamet Cimetidine
28 replies
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- By Sandy0729
- Posted September 19, 2009 at 12:24 pm
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Hi!
I've been on Doxil for 5 months. As far as I know, my heart is fine. I had a muga test prior to taking Doxil. I was very active - walked 4 miles a day, went to the gym 3 times a week and did lots of yard work. I find that with Doxil, I can't be as active. I get nasty blisters on my feet that really hurt. In addition, I also have a rash on my legs. I'm very sensitive to the heat with the rash and blisters more prevalent during warm, muggy weather, so I stay in air conditioning.
These are some of the side effects that you can get from Doxil, but please remember that everyone is different - you may have no side effects at all and you should plan on having none!
You might want to go online - there's a lot of info on the internet. Good luck!
Hugs and healing,
Sandy
- By annejulia
- Posted September 19, 2009 at 5:53 pm
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Thank you Sandy for your input. Every chemo has untoward effects and I just wanted to get an idea what to watch out for. annejulia...
I appreciate you taking the time to respond.
- By Crit
- Posted September 19, 2009 at 7:03 pm
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My wife is at cycle 6, she had the MUGA test and will have a CAT scan next week. The drug has been a bit of a problem on her skin and feet. We are both chefs and spend lots of time on our feet working very hard. She had foot trouble in August when it finally got hot here on Cape Cod. She had a very bad rash for the first few cycles, but it has become less and less over time, now, very little, just a couple of days it seems. Her feet still hurt some days, but again, less than before. Her foot blisters were on the top of her feet and huge, they looked just like a burn blisters ( as chefs, we have seen bad burns before) Good luck with your treatment and remember that if you react at all, it will become less over time.
- By annejulia
- Posted September 19, 2009 at 8:55 pm
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First of all I wish you and your wife the best and hopefully the treatment will outweigh the side effects. It seems to be that rashes and blisters are really a problem with Doxil. I was wondering what, if anything, can be done to prevent these particular side effects???
It seems like Cancer isn't the only battle we will fight.....those doggone side effects can really be debilitating as well. Take good care. Thanks for the information. Better to be informed so I won't faint when something like you have gone through happens to me. Annejulia
- By Crit
- Posted September 19, 2009 at 9:44 pm
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Annjulia, Diane's nurse said the best scenario would be if she could be off her feet in a cool place, not slamming around in a 100 degree kitchen. The skin rash has simply subsided over time, as predicted by her Doc. One of the Fellows added Dexamethasone as a premed and it does stop any immediate pop up rash, but doxil releases so very slow that it is not possible for the steroids to last that long. Udderly Smooth has helped her hands and feet, though her hands have been no real problem(as I see it, she may say different) All the recommendations by the makers of Doxil do help, like icing of hands and feet at administration time. You will get a lot of info from your chemo nurse, its all good. My wife does say that she has never felt bad from the cancer, it's the drugs.
- By CountryGirl46
- Posted September 20, 2009 at 1:33 am
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The first time I went thru chemo Doxil was one of them that I had with no outstanding problems. The second time I went thru chemo I had a very bad reaction to the Doxil. They ended up taking me from the cancer center by ambulance to the hospital. My blood pressure had bottomed out and I had trouble breathing, my body went into shock. My OC said that my body rejected the Doxil, it had had enough and I couldn't take it anymore. You just never know when your body will decide to reject any one of the chemo drugs. It is so scary to put any of this poison into our bodies. I hope you the best Anne
- By kibbitzqueen
- Posted September 20, 2009 at 7:50 am
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annejulia ,
I just finished 6 rounds of Doxcil. I have had issues with my feet, skin and nails. I had just built up to walking 45 minutes a day when I got a blister from my sneakers. I didn't think anything about it really. Then it turned into a nasty sore. I equate it to being burned by touching the rack in the oven. It took forever to heal. I switched to sandals that are leather strapped slide ons that have minimal contact with my feet. I also got 'burns' in the creases of my writst and heels. I've also had several nasty blisters/burns that are under the straps where my sandals touch my feet! UGH! They took a long time to heal. My urine didn't change color either... just as a side note.
I had weekly Taxotere treatments. My body rejected the Taxotere. It was like I was turning inside out. (forgive the description but I'd want to know) I needed to use the bathroom immediately ... for both reasons. I vomited several times too, my eyes teared, my nose ran, my mouth salivated, my ears excreted wax, my ears buzzed and it felt like my heart and lungs were filling up with water because it got really hard to breath! It was like my body went haywire and was trying to reject everything it had all at the same time!
It was really embarassing throwing up in a room full of 12 other chemo patients. I actually had those same reactions happen twice! Benedryl to the rescue. The first time I had no idea what was happening. My sister said 'you look funny, are you ok?' by then, I couldn't even speak then the turning 'inside out' started.
I've been on chemo for 14 of the past 18 years. I think your body does just finally say enough is enough.
As far as I know I didn't have any damage to my heart. I had a MUGA and a PET scan pre and post Doxcil. I also found out that I don't have kidney or liver damage either! WOW! I was SHOCKED at that one after so many years of chemo!
Next month, surgery again. It has been over eight years since I had my last 'look' or 'debulking' surgery. My Michigan doctor was all for debulking and looking. My Georgia doctor hasn't been. It's hard when I don't feel like I'm activly doing something to fight the cancer.
Another step in the life of a caner patient!
Hope this helped with your question.
Good Luck!
~Kibbie
- By GrandmaB
- Posted September 20, 2009 at 10:10 am
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Honey- for what it is worth, I just had Doxil #6 (directly following T/C 6 ) and it has been a walk in the park! In fact, the picture on my profile was when we were leaving for Germany and France after Doxil #2. I hope you have the same experience. My only problem is that my CA125 is hung up in the 30's since March and now the proof of the pudding so to speak will be my CAT in Oct. Good Luck!
- By GEPI
- Posted September 20, 2009 at 11:31 am
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Hi,
I just started Doxil 2 weeks ago. I used ice in water and put my feet and hands in for the first few days and since I do chemo on Fridays I avoided any tight clothes / shoes for the first few days. For the 1st 10 days I felt really well but the last few days I feel tired. I was told to take vitamin B6 every day - which I do, and also for 3 days after chemo I take Prezolon (similar to Dexam....). I also had a mouth wash (Soda and water) after food for the few days - preventaviley and when I felt a sore. Additionally I had a lotion (elocon - I live in Europe - Greece, so trade names may vary) which I used on hand and feet for the 1st few days. So far no hair loss/thinning. Just the odd blister in the mouth, took soda water mouthwash and it went away.
Early days yet for me too.
All the best
GEPI
- By annejulia
- Posted September 20, 2009 at 2:27 pm
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Thank you for your added advice. You have been very helpful. Being Chef's you both are on your feet most of the time and I forgot about the Hot Kitchen which would be an added dilemma with rashes etc. Hope there is something good cooking up in Your Kitchen today. Chef's make things look so easy but I know it takes a lot of work to put together a yummy masterpiece meal. Now I am getting hungry.... LOL.
Thanks again. annejulia
- By annejulia
- Posted September 20, 2009 at 2:30 pm
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Hi Kibbie! Sounds like you have been having a lot of fun too. Thank you for your response , I do appreciate this site so much thanks to all you great members. This support group helps me to cope like no one else can. annejulia
- By annejulia
- Posted September 20, 2009 at 2:36 pm
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Country girl.........thanks for sharing what happened to you with me. Sometimes I think I am the only one certain things happen to. I want to think I can bouce back if I do have something bad happen. annejulia
- By annejulia
- Posted September 20, 2009 at 2:39 pm
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GrandmaB. Thank You. It was nice to hear someone with Positive input. I hope I will be one of the lucky one's too. annejulia
- By annejulia
- Posted September 20, 2009 at 2:41 pm
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GEPI.............Thank you for the Preventive side of this chemo . You have been extremely helpful. Hope you continue to keep those side effects at bay. annejulia
- By Shearaw
- Posted September 20, 2009 at 3:55 pm
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I also started Doxil after an allergic reaction to Carboplatin. Like Sandy I had been active prior to starting Doxil. I have had the same set of foot side effects, no matter what type of shoe or sandal I tried. The sores are on the tops and sides and heels. I also got sores on both elbows. My hands are much less affected. I use Udder Balm, Bag Balm, and Cetaphil on the dry and peeling skin, with triple antibiotic ointment on the open sores.
I wish you an easy time and a good outcome.
I've also had thinning hair :-( and mouth sores. Because of the mouth sores, the docs reduced my dose, which had been at the max rate. The mouth sores have cleared up. I had to use Magic Mouthwash, canker sore patches, and be on a soft/liquid diet for several weeks. I lost about 10 lb. on this regimen.
There are two different ways that they can monitor our hearts - either by MUGA scan or by echocardiogram. In both cases they are looking for any deterioration in pumping strength.
- By annejulia
- Posted September 20, 2009 at 4:07 pm
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Shearaw....... It seems the blistering is a big side effect for most. Udder Balm has been mentioned a lot and I think I will buy some ahead of time in case I may need it. Rather be prepared and not have to run to the store after the fact. Thanks !!! Annejulia
- By tg4love
- Posted September 20, 2009 at 6:25 pm
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Hi, I just wanted to add a few small things, please. I have had 3 Doxil treatments as recent as 1 week ago. The first one was horrible but that was because they gave it to me to fast. So from now on it's the full 90 min. drip. I also use ice gloves and ice on my feet as well. Twenty four hours AFTER my chemo I have flushing really bad and nausea really bad, but I do take anti-nausea meds and benadryl and it keeps in check for 3 days. After that the next week is just washed out. My counts tend to drop on the 7th day until about 13th day. But they never really get up past the bottom anyway. No big deal to me anymore. But, the hands and feet start showing a bad discoloration and they look dirty. The skin on my feet turns ruby red and peels off in sheets, and my hands, they look like I ground dirt into the palms and knuckles. My nails are already in bad shape from the taxotere/avastin I had a few months ago. They continue to get worse and I'm losing more of my nails. I think for me, the mouth sores are THE very worse thing. I have had as many as 10 in my mouth at once time. I've lost 25lbs so far because I can't eat. I have several mouth meds to use that my dentist gave me. My ONC. doesn't help me much so I've gone to my dentist, what a life saver. Usually the sores come about the second week for me and last until just a few days before I have my next chemo. Bummer.
Well, that is what I've experienced with the Doxil. This is the 5th time with different chemo treatments. I haven't had hair for the last 3 yrs but I am starting to get some peep fuzz. I couldn't get thinning since I had nothing to thin, but I am getting a little back, yeah!
Thinking of you.....
- By annejulia
- Posted September 20, 2009 at 6:35 pm
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tg4Love..... seems everyone has mostly the same complaints about this chemo. Isn't it a shame that the drugs that keep us alive also cause us so much pain and anquish. I don't start it until Oct. 2nd if the echocardiogram comes out OK. I certainly will let you all know how I make out. I appreciate your taking the time to let me know first hand what I may be up against. annejulia
- By Shearaw
- Posted September 20, 2009 at 7:32 pm
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I had the mouth sores on the same cyclical interval as tg4love. Whenever I am not sore, I try to remember to rinse with baking soda and water.
I also ice hands and foot soles during infusion. And lotion on them several times a day.
When I was on the stronger dose, I also had the very dark hands and feet. In fact someone complemented me on my tanned toes and pedi back in June, haha! Both the "tan" and the pedi are gone now.
I have to say that my onc and the study nurses have been great with help for managing the side effects. And they inspect my skin and mouth every 2 weeks to make sure they are within their estmate of acceptable. Maybe that comes with wanting to make sure I can stay on the trial. They gave me the smallest possible dose of oxycodone to help with pain. I only take it before bed so that it is easier to get to sleep.
- By annejulia
- Posted September 20, 2009 at 8:01 pm
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Shearaw......thanks again for the input. Some people would not like to know the bad and the ugly of it all but I don't like being in the dark when it comes to chemo.
I know things are not always what we wish so I will keep my fingers crossed and with a prayer too that I will have only minor problems with Doxil..... You all are so terrific. No one understands our anxiety like this group of wonderful people. annejulia
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