Major side effects

daylady
daylady Member Posts: 122
in Uterine/Endometrial Cancer #1

I was dx in jan 2014 with UPSC stage IVB.  It had spread to the omentum area, but no organ involvement.  Major reduction surgery, followed by 6 mo of chemo and vaginal brachytherapy.  Got to NED in July 2014, but had a recurrence in several lymph nodes in Dec. 2014.  Caught very early with CT/PET scan, no tumor, masses, or organ involvement...just enlarged nodes.  Started 6 mo of chemo with full strength Doxil.  Had no reaction to chemo last year, but am struggling with the Doxil terribly!  Got mouth sores so bad it nearly closed my esophagus.  My oncologist agreed to reduce the dosage and so this month no mouth sores but am dealing with skin rashes left over fromthe last full dose treatment, and the hand/foot syndrome that was kicking in at the end of last cycle (just aggravating at that point) is now so bad that every step is like walking on broken glass!  I am spending every day with the maximum dosage of Tylenol and ice packs on my feet for 20-30 min at a time every couple of hours.  It's been like this for a week with no respite!!!  I have no idea how long it will take for this to run it's course and am hoping that the reduced dosage will prevent it from coming back next time.  I have an appt. for a CT scan on Monday and right now I could not make it from the car to the office without a wheelchair!  Two weeks ago I could walk 5 miles a day.  Now I can't make it from the couch to the bathroom!  My oncologist does think the drug is working as my CA125 numbers have Been falling dramatically and she thinks the scan results will be good, but I am very discouraged!!!!!  

Comments

  • AWK
    AWK Member Posts: 364 Member
    #2
    Ugh! I have been there.

    I had such bad sores in my mouth and throat my doctor ended up prescribing a wash for me.  It worked really well.  To soothe my feet I used a compress called Lindi skin cooler which you can order online.  They have other treatments too.  I always felt like I was walking on hot burning sand.  i also got burns where seams rubbed.  I used Gold Bond powder on my abdomen which also stung a little but provided relief.  

    Doxil is so darn tricky.   If I think of anything else I will post.  sending prayers for healing and relief for you.  Anne

  • AWK
    AWK Member Posts: 364 Member
    #3
    AWK said:

    Ugh! I have been there.

    I had such bad sores in my mouth and throat my doctor ended up prescribing a wash for me.  It worked really well.  To soothe my feet I used a compress called Lindi skin cooler which you can order online.  They have other treatments too.  I always felt like I was walking on hot burning sand.  i also got burns where seams rubbed.  I used Gold Bond powder on my abdomen which also stung a little but provided relief.  

    Doxil is so darn tricky.   If I think of anything else I will post.  sending prayers for healing and relief for you.  Anne

    Oatmeal baths, soaps too

    Hope that helps.  

  • daylady
    daylady Member Posts: 122
    #4
    AWK said:

    Ugh! I have been there.

    I had such bad sores in my mouth and throat my doctor ended up prescribing a wash for me.  It worked really well.  To soothe my feet I used a compress called Lindi skin cooler which you can order online.  They have other treatments too.  I always felt like I was walking on hot burning sand.  i also got burns where seams rubbed.  I used Gold Bond powder on my abdomen which also stung a little but provided relief.  

    Doxil is so darn tricky.   If I think of anything else I will post.  sending prayers for healing and relief for you.  Anne

    Ugh

    Thanks so much Anne.  Did you find the burning feet went through a cycle?  Did you have any respite between cycles?  I found with the mouth sores that they followed kind of a 10 day cycle and by the last week of one cycle things had pretty much healed up.  Did you experience that with your feet too?  I'm pretty desperate at this point.  I was also referred to dermatology who prescribed a steroid cream for the body rashes.  Had a severe reaction to the cream and broke out in horrible burn spots under my arms that are now healing wounds that hurt like the devil.  Stopped the cream and told everyone I was going back to simple OTC Vit E cream and things are healing, but so much pain from so many areas is making my disposition less than fun loving!

  • AWK
    AWK Member Posts: 364 Member
    #5
    daylady said:

    Ugh

    Thanks so much Anne.  Did you find the burning feet went through a cycle?  Did you have any respite between cycles?  I found with the mouth sores that they followed kind of a 10 day cycle and by the last week of one cycle things had pretty much healed up.  Did you experience that with your feet too?  I'm pretty desperate at this point.  I was also referred to dermatology who prescribed a steroid cream for the body rashes.  Had a severe reaction to the cream and broke out in horrible burn spots under my arms that are now healing wounds that hurt like the devil.  Stopped the cream and told everyone I was going back to simple OTC Vit E cream and things are healing, but so much pain from so many areas is making my disposition less than fun loving!

    You will get some relief

    It never entirely went away but once I got it under control the rawness and blistering got better.   I had to dig around to find shoes that I could wear that wouldn't rub or make it worse.  One of my Chemosabes wore cotton footies and keep getting pedicures and manicures, not for the nails but to stimulate the nerves.  She also wore her tennis shoes all the time; big sacrifice for a fashionista!  She is doing well and got through it better than I did.  I just couldn't bear the thought of anyone touching my feet or hands.  Night time was the worst.  The hospital I am treated at offers free massages for feet and hands for the same reason.  

    It freaked my husband out because I had a couple of falls and balance issues.  Walking was a challenge and I was still working so I ended up changing my schedule around, working from home and less time in the market.   I did find my way back to my sense of humor over it all though and so did he.   Do what you need to do and yes, remember it is all temporary. 

  • daylady
    daylady Member Posts: 122
    #6
    AWK said:

    You will get some relief

    It never entirely went away but once I got it under control the rawness and blistering got better.   I had to dig around to find shoes that I could wear that wouldn't rub or make it worse.  One of my Chemosabes wore cotton footies and keep getting pedicures and manicures, not for the nails but to stimulate the nerves.  She also wore her tennis shoes all the time; big sacrifice for a fashionista!  She is doing well and got through it better than I did.  I just couldn't bear the thought of anyone touching my feet or hands.  Night time was the worst.  The hospital I am treated at offers free massages for feet and hands for the same reason.  

    It freaked my husband out because I had a couple of falls and balance issues.  Walking was a challenge and I was still working so I ended up changing my schedule around, working from home and less time in the market.   I did find my way back to my sense of humor over it all though and so did he.   Do what you need to do and yes, remember it is all temporary. 

    Thanks so much!  How long

    Thanks so much!  How long after you stopped treatment before it wet away?

  • AWK
    AWK Member Posts: 364 Member
    #7
    daylady said:

    Thanks so much!  How long

    Thanks so much!  How long after you stopped treatment before it wet away?

    I think three weeks to a month?

    It is kind of a blur as I went from that to Avastin.  Which is much easier to handle although I am home today because I am just beat from Monday's treatment.  First time I have felt like this in 10 of these treatments.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #8
    AWK said:

    I think three weeks to a month?

    It is kind of a blur as I went from that to Avastin.  Which is much easier to handle although I am home today because I am just beat from Monday's treatment.  First time I have felt like this in 10 of these treatments.

    If need be

    I hope I am as strong as you ladies.

  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    #9
    Doxil side effects

    I had the very same side effects that you got. The blisters on my feet were so bad a friend of mine shared a small amount of liquid Liacaine and it helped with the pain. I could only wear Croc's. I feel your pain, I could only do 4 doses even with a lower dose. I couldn't wear anything tight either, it would cause a terrible rash. It takes awhile to go away. I just recently had to go back on chemo and this time it was Cisplatin. I was so sick from this chemo I could only do 2 doses. I hope you heal soon.

     

  • nempark
    nempark Member Posts: 681
    #10
    Fuzzy!!!!

    How are you fuzzy?  Haven't heard from you for a while.  Please let us know how you ar doing.  Did you have a recurrence?  

  • Ann55
    Ann55 Member Posts: 48
    #11
    I had the same problem with

    I had the same problem with blistering on hands and feet with doxil.The feet blisters were almost the size of baseballs and the indigestion and reflux were terrible.The blistering was so bad they had to stop the treatments for 2 months and when they started them back I was placed on massive doses of steriods to be able to complete the treatment cycle but it worked and I finally got a remission! I also got cataracts from the steriods but they will be removed soon.I'm enjoying this remission no chemo for 6 months now.Hang in there, this too shall pass.  

  • daylady
    daylady Member Posts: 122
    #12
    Ann55 said:

    I had the same problem with

    I had the same problem with blistering on hands and feet with doxil.The feet blisters were almost the size of baseballs and the indigestion and reflux were terrible.The blistering was so bad they had to stop the treatments for 2 months and when they started them back I was placed on massive doses of steriods to be able to complete the treatment cycle but it worked and I finally got a remission! I also got cataracts from the steriods but they will be removed soon.I'm enjoying this remission no chemo for 6 months now.Hang in there, this too shall pass.  

    Doxil Side effects...

    Thanks so much for everyone's comments!  I had a CT scan today and the enlarged lymph nodes are shrinking. nothing new has shown up except my spleen is slightly enlarged now.  But I cn barely walk and the rash on my trunk is so bad.  Very hard to sleep or wear clothes.  Going to dermatology tomorrow.  Hope they have some kind of magic bullet in their bag of tricks. 

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #13
    daylady said:

    Doxil Side effects...

    Thanks so much for everyone's comments!  I had a CT scan today and the enlarged lymph nodes are shrinking. nothing new has shown up except my spleen is slightly enlarged now.  But I cn barely walk and the rash on my trunk is so bad.  Very hard to sleep or wear clothes.  Going to dermatology tomorrow.  Hope they have some kind of magic bullet in their bag of tricks. 

    Ditto, to what ConnieSW said!

    I believe that the strongest and most heroic people I have ever been fortunate to get to know, have been the brave and beautiful women who have shared their lives and their cancer journeys with us here. Before I embarked on my personal cancer journey , I really had no idea what cancer was all about. Certainly, not like I do now. It has changed me in quite positive ways, for which I am grateful.

    I feel that each of you have allowed me to glimpse your personal lives in ways that only the most intimate friends and family members do , and I am humbly grateful to each of you for your willingness to bare your souls to others. That takes such immeasurable inner fortitude.

    Love to each of you dear women,

    Cathy

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