Doxil and Avastin side effects

Oma~reviews will B mixed~wishing 4 btr days ahead 4 U

My Dear Oma

You are so right—living with terminal cancer IS difficult.  That is certainly evident by what you’ve already endured.  Chemotherapy is no “piece of cake”.  And yet, our options are few.  The most we can do is arm ourselves with the truth about our particular cancer, whatever it is, and then set out to make the wisest choices possible.  Needless to say, I’m sorry you are hurting like you are.  It saddens me to hear another story about these awful side effects of DOXIL/Avastin. 

And like another woman “J Kerry” said whose husband had been diagnosed with Stage IV Esophageal Cancer, “It’s hard when you’ve had the “future tense” stripped out of your vocabulary when you’re talking to the one you expected to spend the rest of your life with!”

https://www.youtube.com/watch?v=so9Yhh__c-8

Her husband died 3 months after she shared her feelings so openly about her husband Paul.  He was only 49.  This is the most poignant story I’ve listened to and I’ve listened to a lot.  I know exactly how she feels.  My eyes fill with tears and my heart aches each time I watch this 7 minute video. 

I write on 3 different discussion links because my husband is a “miraculous” survivor or Stage III Esophageal Cancer!  (EC – OC & PC) So I’ve lived on both sides of the fence, first as a caregiver to my husband,  and now as a terminal cancer patient myself.  So I know how you suffer as a terminal cancer patient, and how those around you are hurting who want so badly for things to go well for you.  Everyone says to me, “Loretta I can’t stand to think that you’re not going to get well.  I’m praying for the Lord to heal you.”  And I say, “Well if that makes YOU feel better, go ahead.  But as for me, God doesn’t choose to heal everyone and I want you to pray that He will give me the physical and spiritual strength to endure for whatever period of time He allows."   And He has.  Yes there can be “down days” when I rush way ahead and attend my own funeral, but every day that I spend worrying are days wasted because they produce no good results. 

As for my own choice of drugs and having listened to some of the ladies here tell about their DOXIL experiences, I decided that I was not going to risk taking Doxil or Avastin.  And after reading your letter, I am yet again convinced that I’ve made the right decision.  Having just raced right to the top of the diagnosis cancer chain, I checked in at the ER (11-2012) thinking I had a hernia and two hours later and a CT scan, the report read “Peritoneal Carcinomatosis!”  So a second opinion and exploratory surgery confirmed that diagnosis and that cancer was also in both my ovaries.  So I underwent neo-adjuvant chemo of Carboplatin/Paclitaxel (Taxol).  It brought the cancers down to a size and number that I was able to have Cytoreductive surgery July 1, 2013.  Incidentally, this “CRS” was never meant to be curative, but to give me a longer period of “Progression Free Survival.”  (PFS)  Now that original diagnosis was first given me in November of 2012, so the Lord has allowed me to live much much longer than the stats suggest. 

But now the “times” of progression free survival are becoming shorter and shorter.  And so the last time my doctor told me, he would recommend DOXIL.  Now he said I wouldn’t be a candidate for AVASTIN because I have a blood condition separate from my cancer.  I’ve had it for years.  I’m almost a free-bleeder.  But even if that were not the case, after reading the side effects of AVASTIN and of DOXIL, and what it has done to my sisters here, I will not take it.

I told the oncologist, “You know I am a Christian, and I know where I’m going when I die.  And after all, I am a terminal cancer patient.  And why do I want to make my last days worse by taking a chance on DOXIL, when it isn’t going to be long-term?”  And from reading after my OC sisters here, I don’t want to risk the burning blisters on my hands and feet.  So I’ve said all that to say this, when my doctor said, “Well approximately 50% will have that side effect, I said, “No thank you.”  Now he didn’t argue, but I know all he can do when he thinks I’m becoming “platin sensitive” is to recommend the next thing DOWN the chemo chain.  I’ve decided much like “Guitardiva” that quality of life should be more than merely existing and living in pain. 

So since I know that this discussion has gone on long before you joined today, I thought I would at least give you the link to one important topic discussion that helped me make up my own mind.  And it really doesn’t make it any more tolerable, just to know that others have this side effect also, but since you’re new here—here is that link:

 https://csn.cancer.org/node/309820

Sorry, but I’m not a cheerleader when it comes to DOXIL or AVASTIN or both combined.  So it will be interesting to see what others have had to say.  But I’m not qualified to tell you about how it affected me, but no doubt others will.  And here’s another clue for your future postings.  Should you want to ask someone a question after reading some of their comments, “click” on the name in the “blue block” and up will come their about-me page.  You will always see 2 dates, the date they joined and the date they were last online.  That will give you a clue as to how active that particular person is. 

And here is another letter that I wrote quite a while back now asking the same question you’re asking.  Would anyone like to share their DOXIL treatment story?  You can read it here:   https://csn.cancer.org/node/312623

Normally, I’m not a “downer” but so far I haven’t read enough “good” stories about these drugs to convince me that I would benefit from them.  The itching, burning blisters on hands and feet, is not something I view as “quality of life” and as a Stage IV my “PFS” days are dwindling down to a precious few.  And I’m going to “savor” them and thank God for the extension of time He is giving me and my husband.

Wishing you were without those horrible side effects,

Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer DX 11-2012 & like you—STILL HERE.)

________________________________________________________ 

P.S.  Below is one letter from “Beth C” who joined and posted her letter on October 23, 2017.  I note she has only returned once on October 24, 2017.  Here was her brief remarks.  She was/is having the same horrible side effects from DOXIL.  I do wish someone else who had actually been taking DOXIL had shared their story.  That would have “offset my not-too-good” reply.  I hope Beth is having a real time of “Progression Free Survival” but she hasn’t been back on to tell us.  Oft times I find that a lady will come here, make one posting, and often not even return.  Sometimes they just need to “get it out of their system and vent their frustrations of which there are always MANY when we have a cancer diagnosis, no matter the stage!”  We need to listen to all of them and share and bare their burdens when we can.  “Honesty” is always the best policy and sometimes that’s hard to relay to other persons and yet not dash their hopes.  However, as a realist, I try to be bold enough to be true to myself and look at both the bottom side of the “tapestry of life” with all the knots and hanging threads as well as what we hope the top looks like. 

“https://csn.cancer.org/node/312617

After 3 years, a recurrence.  Oct 24, 2017 - 12:26 am

Hi everyone.  A quick about me and my story.  I’m facing a recurrence and it was so out of the blue, I was asymptomatic and thought everything was going great after my original diagnosis in 2014. 

In 2014 after not having a period for over 2 years, I started spotting and went to my GP. A CA-125 results were 126.

An ultrasound showed something going on in both ovaries and a fibroid on the uterus.

 A CT scan was then done. It was all so fast. Before I knew it, we were meeting with an oncologist and scheduling hysterectomy.

 And after the results of that, there was 18 weeks of Carboplatin and Taxol. 

After 3 years of my CA-125 results being consistently in the single digits, in June 2017 my numbers jumped to 1715. My ONC did a re-test 3 weeks later and the number jumped to 2952.

 At this point, he wanted to me to start chemo immediately but my partner and I had a bucket list trip to Alaska planned. 2 days after returning, I had my first chemo - Doxil.

My CA-125 had jumped to 6243.

 Before my 2nd chemo, my CA-125 jumped to 8495.

I had a horrible reaction to Doxil so my ONC changed my 3rd chemo treatment to Taxol which I tolerated fairly well in 2014.

 My CA-125 finally showed a drop to 4555. My treatments are now 3 weeks on, 1 week off.”

___________________________________________________ 

“Dear Beth:

Needless to say all of us here are sad to learn of your recurrence.  As far as DOXIL is concerned, I am ruling it out as my next option, although my oncologist thinks I should consider it.  He thinks I am becoming “platin resistant”, and that I need to change to something else.  As for now, I don’t know what it will be, if anything at all.  One thing I have said from the beginning of my knowledge of chemotherapy because of my husband’s diagnosis back in 2002, I am NOT going to keep on taking one chemo treatment after another when the side effects are as bad or worse than I’m feeling with my cancer.  I want to have some semblance of QOL—quality of life—and the side effects of DOXIL do not fit that description for me.  So for that reason I’ve chosen to answer you on a new topic forum so that others might join in and share their treatment options especially relative to Doxil.  My nurse described it as “Plan B” when “Plan A” ceases to be effective.  Then what happens when “Plan B” doesn’t work and so on?????

So you can read my “expanded” response to your posting here: 

https://csn.cancer.org/node/312623

Hoping that you will be able to enjoy many more great fun-filled trips to far-away places in the days that follow while looking back at cancer in the “rear view” mirror.

Love Loretta

stingaree57 said:

rash on legs and arms from Doxil

I have a rash on arms and legs, not hands and feet. Have had three treatments. rash started after second treatment and has not gone away.  very itchy at times.  I m using Aveeno eczema cream and benedryl pills.  Rash clears up a little, but then comes back.  Has anyone used anything that has taken the rash completely away.

 

I'm a visitor from the Uterine Board and while I haven't taken Doxil, there is a current thread on that Board regarding the side effects of Doxil. You may want to follow that discussion to see if anyone there offers any advice that might also help with your rash.

I'm sorry that you had to join this site, but I hope the information here helps as you undergo treatment.

LorettaMarshall said:

Oma~reviews will B mixed~wishing 4 btr days ahead 4 U

My Dear Oma

You are so right—living with terminal cancer IS difficult.  That is certainly evident by what you’ve already endured.  Chemotherapy is no “piece of cake”.  And yet, our options are few.  The most we can do is arm ourselves with the truth about our particular cancer, whatever it is, and then set out to make the wisest choices possible.  Needless to say, I’m sorry you are hurting like you are.  It saddens me to hear another story about these awful side effects of DOXIL/Avastin. 

And like another woman “J Kerry” said whose husband had been diagnosed with Stage IV Esophageal Cancer, “It’s hard when you’ve had the “future tense” stripped out of your vocabulary when you’re talking to the one you expected to spend the rest of your life with!”

https://www.youtube.com/watch?v=so9Yhh__c-8

Her husband died 3 months after she shared her feelings so openly about her husband Paul.  He was only 49.  This is the most poignant story I’ve listened to and I’ve listened to a lot.  I know exactly how she feels.  My eyes fill with tears and my heart aches each time I watch this 7 minute video. 

I write on 3 different discussion links because my husband is a “miraculous” survivor or Stage III Esophageal Cancer!  (EC – OC & PC) So I’ve lived on both sides of the fence, first as a caregiver to my husband,  and now as a terminal cancer patient myself.  So I know how you suffer as a terminal cancer patient, and how those around you are hurting who want so badly for things to go well for you.  Everyone says to me, “Loretta I can’t stand to think that you’re not going to get well.  I’m praying for the Lord to heal you.”  And I say, “Well if that makes YOU feel better, go ahead.  But as for me, God doesn’t choose to heal everyone and I want you to pray that He will give me the physical and spiritual strength to endure for whatever period of time He allows."   And He has.  Yes there can be “down days” when I rush way ahead and attend my own funeral, but every day that I spend worrying are days wasted because they produce no good results. 

As for my own choice of drugs and having listened to some of the ladies here tell about their DOXIL experiences, I decided that I was not going to risk taking Doxil or Avastin.  And after reading your letter, I am yet again convinced that I’ve made the right decision.  Having just raced right to the top of the diagnosis cancer chain, I checked in at the ER (11-2012) thinking I had a hernia and two hours later and a CT scan, the report read “Peritoneal Carcinomatosis!”  So a second opinion and exploratory surgery confirmed that diagnosis and that cancer was also in both my ovaries.  So I underwent neo-adjuvant chemo of Carboplatin/Paclitaxel (Taxol).  It brought the cancers down to a size and number that I was able to have Cytoreductive surgery July 1, 2013.  Incidentally, this “CRS” was never meant to be curative, but to give me a longer period of “Progression Free Survival.”  (PFS)  Now that original diagnosis was first given me in November of 2012, so the Lord has allowed me to live much much longer than the stats suggest. 

But now the “times” of progression free survival are becoming shorter and shorter.  And so the last time my doctor told me, he would recommend DOXIL.  Now he said I wouldn’t be a candidate for AVASTIN because I have a blood condition separate from my cancer.  I’ve had it for years.  I’m almost a free-bleeder.  But even if that were not the case, after reading the side effects of AVASTIN and of DOXIL, and what it has done to my sisters here, I will not take it.

I told the oncologist, “You know I am a Christian, and I know where I’m going when I die.  And after all, I am a terminal cancer patient.  And why do I want to make my last days worse by taking a chance on DOXIL, when it isn’t going to be long-term?”  And from reading after my OC sisters here, I don’t want to risk the burning blisters on my hands and feet.  So I’ve said all that to say this, when my doctor said, “Well approximately 50% will have that side effect, I said, “No thank you.”  Now he didn’t argue, but I know all he can do when he thinks I’m becoming “platin sensitive” is to recommend the next thing DOWN the chemo chain.  I’ve decided much like “Guitardiva” that quality of life should be more than merely existing and living in pain. 

So since I know that this discussion has gone on long before you joined today, I thought I would at least give you the link to one important topic discussion that helped me make up my own mind.  And it really doesn’t make it any more tolerable, just to know that others have this side effect also, but since you’re new here—here is that link:

 https://csn.cancer.org/node/309820

Sorry, but I’m not a cheerleader when it comes to DOXIL or AVASTIN or both combined.  So it will be interesting to see what others have had to say.  But I’m not qualified to tell you about how it affected me, but no doubt others will.  And here’s another clue for your future postings.  Should you want to ask someone a question after reading some of their comments, “click” on the name in the “blue block” and up will come their about-me page.  You will always see 2 dates, the date they joined and the date they were last online.  That will give you a clue as to how active that particular person is. 

And here is another letter that I wrote quite a while back now asking the same question you’re asking.  Would anyone like to share their DOXIL treatment story?  You can read it here:   https://csn.cancer.org/node/312623

Normally, I’m not a “downer” but so far I haven’t read enough “good” stories about these drugs to convince me that I would benefit from them.  The itching, burning blisters on hands and feet, is not something I view as “quality of life” and as a Stage IV my “PFS” days are dwindling down to a precious few.  And I’m going to “savor” them and thank God for the extension of time He is giving me and my husband.

Wishing you were without those horrible side effects,

Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer DX 11-2012 & like you—STILL HERE.)

________________________________________________________ 

P.S.  Below is one letter from “Beth C” who joined and posted her letter on October 23, 2017.  I note she has only returned once on October 24, 2017.  Here was her brief remarks.  She was/is having the same horrible side effects from DOXIL.  I do wish someone else who had actually been taking DOXIL had shared their story.  That would have “offset my not-too-good” reply.  I hope Beth is having a real time of “Progression Free Survival” but she hasn’t been back on to tell us.  Oft times I find that a lady will come here, make one posting, and often not even return.  Sometimes they just need to “get it out of their system and vent their frustrations of which there are always MANY when we have a cancer diagnosis, no matter the stage!”  We need to listen to all of them and share and bare their burdens when we can.  “Honesty” is always the best policy and sometimes that’s hard to relay to other persons and yet not dash their hopes.  However, as a realist, I try to be bold enough to be true to myself and look at both the bottom side of the “tapestry of life” with all the knots and hanging threads as well as what we hope the top looks like. 

“https://csn.cancer.org/node/312617

After 3 years, a recurrence.  Oct 24, 2017 - 12:26 am

Hi everyone.  A quick about me and my story.  I’m facing a recurrence and it was so out of the blue, I was asymptomatic and thought everything was going great after my original diagnosis in 2014. 

In 2014 after not having a period for over 2 years, I started spotting and went to my GP. A CA-125 results were 126.

An ultrasound showed something going on in both ovaries and a fibroid on the uterus.

 A CT scan was then done. It was all so fast. Before I knew it, we were meeting with an oncologist and scheduling hysterectomy.

 And after the results of that, there was 18 weeks of Carboplatin and Taxol. 

After 3 years of my CA-125 results being consistently in the single digits, in June 2017 my numbers jumped to 1715. My ONC did a re-test 3 weeks later and the number jumped to 2952.

 At this point, he wanted to me to start chemo immediately but my partner and I had a bucket list trip to Alaska planned. 2 days after returning, I had my first chemo - Doxil.

My CA-125 had jumped to 6243.

 Before my 2nd chemo, my CA-125 jumped to 8495.

I had a horrible reaction to Doxil so my ONC changed my 3rd chemo treatment to Taxol which I tolerated fairly well in 2014.

 My CA-125 finally showed a drop to 4555. My treatments are now 3 weeks on, 1 week off.”

___________________________________________________ 

“Dear Beth:

Needless to say all of us here are sad to learn of your recurrence.  As far as DOXIL is concerned, I am ruling it out as my next option, although my oncologist thinks I should consider it.  He thinks I am becoming “platin resistant”, and that I need to change to something else.  As for now, I don’t know what it will be, if anything at all.  One thing I have said from the beginning of my knowledge of chemotherapy because of my husband’s diagnosis back in 2002, I am NOT going to keep on taking one chemo treatment after another when the side effects are as bad or worse than I’m feeling with my cancer.  I want to have some semblance of QOL—quality of life—and the side effects of DOXIL do not fit that description for me.  So for that reason I’ve chosen to answer you on a new topic forum so that others might join in and share their treatment options especially relative to Doxil.  My nurse described it as “Plan B” when “Plan A” ceases to be effective.  Then what happens when “Plan B” doesn’t work and so on?????

So you can read my “expanded” response to your posting here: 

https://csn.cancer.org/node/312623

Hoping that you will be able to enjoy many more great fun-filled trips to far-away places in the days that follow while looking back at cancer in the “rear view” mirror.

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV- first DX in November of 2012.” 

I have inflammatory breast cancer so my body tends to reject lines of treatment.  (ER+ (60%), PR+ (10%), Her2-   I just had my 2nd infusion of Doxil today.  (Prior to this I was on Xeloda).  Fortunately, I haven't had side effects.  Xeloda has similar side effects so I followed my Dana Farber doctor's instructions to slather my feet with bag balm before bed every night starting w Xeloda and to put sox over them going to bed and to slather my hands with heavy cream am, pm and multiple times a day and to wear lined gloves for dishwashing, any chores etc. I also take L-Glutamine am and pm to help prevent neuropathy.  (Vitamin B6 can easily lead to toxicity although it's in my multivitamin.)   Slathering my feet (and hands) worked except when I was away in a hot area.  When my feet started peeling badly and 2 fingers, I realized they had gotten hot because I'd worn a new pair of sneakers.  I now only wear loose Skechers (Go walk slide ons as well as a super light weight tie pair that has a light fabric).  I also never walk barefoot in the house as I promised her and this has helped to prevent issues.  When my feet did get hot that time, I soaked in ice water and slathered them up multiple times a day until better in 2-3 days.  I also had to take extra L-Glutamine since I could feel my finger tips getting hard (neuropathy).  It worked after a few days.  With regard to Doxil, I had no side effect after the 1st infusion but I sucked ice chips (which they recommended with Adriamycin ("red devil") previousy too in order to prevent mouth sores and used Biotene.  it worked.  I didn't get any.  I just had my 2nd infusion today so am praying I won't have side effects.  I need this chemo to work since I have progressed with every other chemo!   Maybe we don't hear the people without side effects since don't tend to write in but rather just follow our doctor's advice?  Don't know but I'll try to follow up if anyone has questions as I progress and asks me!  

evolo58 said:

For most people

Doxil and Avastin work great. But some do experience strong side effects. There is a reason why doctors check your heart every few months. 

I was one of those who suffered nasty side effects. After the second and third doses, I experienced severe itchy rashes. It felt like I had bathed in a tub full of poison ivy. At one point, it affected my entire body below my waist (literally all the way to my toes!), my hands and wrists, and elbows, as well as a couple of small patches outside these areas. My right elbow and hand swelled slightly. Eventually, the rashes became painful. While the doctor and I worked on various ways to reduce the itching, eventually, clear calamine  lotion, a prescription antihistamine and a prescription cream provided some relief. It wasn't as bad when the rashes turned painful, for some reason.

That, however, was minor compared to what happened next. 

The good news was that the rashes stopped. The bad news, though, was that the treatments caused some fluid buildup around my heart, severe anemia (though anemia is common with chemo), and two sections of collapsed lung. I was wondering why I felt like someone was punching me in the gut. I still have high blood pressure from the Avastin that BP meds seem to have trouble getting down. Some fluid around my lungs could either be ascities or related to high BP because of the Avastin. Nothing has to be drained yet, but I'm still concerned. For a while, I even had trouble climbing the stairs to my bedroom. I was constantly tired; much more tired than carbo/taxol. Oh, and the protein in my urine spiked.

After all of that, my CA-125 kept climbing, and there were some areas on concern on my CT scan. Needless to say, I was pulled off both treatments. While I can try other chemo treatments, my doctors agreed that I might want to go clinical for a while to allow my body to heal better. I am currently on a clinical trial, and still recovering almost two months later from Doxil/Avastin.

I have endometrial cancer (Type 2). 

Again, either or both of these drugs have yielded great results for most people. But if you experience ANYTHING you're concerned about, let your onco know, and keep letting the onco know if problems persist. 

Recently I was taken off  Doxil/Avastin chemo.  After the 2nd treatment I ended up getting a really bad case of the Hand/Foot Syndrome which lasted about 4 weeks.  I also had a rash on my back, arms, elbows, knees  and mouth sores.  My doctor indicated my side effects were rarely seen. I was also taken off Doxi and needed to go on a break from treatment while my body recovered (about 3 months).   New treatment begins next week or the following and I'm not sure what it will be.  Would you please share what your next treatment or clinical trial?   My doctor also said I should consider a trial.  I have Ovarian Cancer.

Candyce