DOXIL-My reply to "BethC"-Does anyone wish to share their Doxil treatment experience, side effects,

LorettaMarshall

Well Good morning Beth ~

Actually I was up very late last night doing research for a dear wife whose husband has been diagnosed with Esophageal Cancer.  So by the time I read your letter, I was, shall I say “brain dead”.  Now Beth, I read your “about me” page and I see that you didn’t put down an age bracket.  Now if I put on my “detective hat”, your not having had a period for over 2 years, and then starting to spot, would lead one to believe that perhaps you had already gone through “the change of life!”  Now isn’t that an interesting phrase?  Wonder if the same person came up with the phrase, “The Golden Years”?  Hhhmmm……? 

As an aside, if anyone wishes to read Solomon’s description of the “golden years”, especially if they are my age, most likely they will agree with Sol’s sentiments.  https://www.biblegateway.com/passage/?search=Ecclesiastes+12&version=AMPC 

Shall we just say it gives new meaning to the old “Patsy Cline” song, “I FALL TO PIECES!” 

https://www.youtube.com/watch?v=HG-8uZg2uV0 – This is Patsy.  

As for me, I’m 78, actually so along in years now that somedays I have to ask myself, “How old am I?”  Birthdays come so quickly that I say, “Didn’t I just have a birthday?”  Okay enough about age.  I hope you know I’m just in a jovial mood this morning.  That’s neither here nor there.  Some women get diagnosed with cancer at a very early age.  Certainly the longer we can live without a CANCER diagnosis, the better off we are.  I think everyone will agree.  Okay enough about “back in the day” when we were all young, beautiful and smart!  It reminds me of the sign I still have posted here in my computer room.  Having raised 3 boys of my own, and then 4 grandchildren, I think it speaks volumes.  And then to be truthful, there was a day when I, as a teenager, fit this description.  The sign reads: 

“TEENAGERS!  -- Tired of being hassled by your stupid parents? 

ACT NOW – Move Out, Get a Job, Pay Your Own Bills…WHILE YOU STILL KNOW EVERYTHING!”

 Now Beth, I will say that I can see your reasoning for taking the “bucket-list trip” to Alaska.  Having had multiple treatments of Carboplatin/Taxol, you certainly had a clue as to what you were “in for!”  I would probably have done the same thing. It reminds me of a discussion I had with my oldest son recently.  He said, "You don't have to save anything for me.  Spend your money now and enjoy life.  Take a trip.  I can take care of my family."  Well, that was nice, but I'm so busy going to the doctors that there's no time to take leisurely trips, especially with "daily diarrhea and/or constipation".  My bowels have been on a "trip of their own" every since my Cytoreductive Surgery in 2013.  So any trip I can take will include many "rest stops" along the way, and knowing where to find some clean restrooms.  That's not to mention the extra baggage I have to take in the way of toilet tissue, wipes, rubber gloves, etc.  Don't you just love it when you go to the bathroom and there is no toilet tissue in the booth you choose?????   Moreover, some people don't know how to "flush the commode!"  And then there are others who seem to "wet on the seat instead of in the bowl!"  Okay enough about traveling, rest stops and bathroom etiquette!  

Beth, I'm curious.  It would help me to know what kind of cancer you had for your original diagnosis.  There are many ladies here that post, but not are all Ovarian Cancer Stage IV patients, like me.  It’s always informative to know one’s original diagnosis and what the oncologists offered as a treatment regimen. 

You say you had a hysterectomy.  How many female parts were removed?  I’m assuming you have had regular follow-ups since that time, and that is how you came to know that you had a problem in June of this year.  At the time you had the hysterectomy, what was your prognosis?  Nowadays, researchers believe that Ovarian cancer most likely begins in the fallopian tubes.  Had I known that at age 36, I would have insisted on having everything removed.  But back then doctors believed that it was best to leave in the ovaries and the tubes so that our hormones would continue to function properly.  My doctor gave me a book that was supposed to prepare me for the hysterectomy.  It had lots of questions.  One was, “Will it make me lose my mind?”  The answer:  “Not unless you were going to anyway!”  Somehow that’s about the only thing I remember about the book.  So my ovaries & tubes were left intact.  But on another note, I’ve learned that one can still be diagnosed with Ovarian cancer, even after the ovaries have been removed.  But if I had to give one piece of advice to those about to undergo a hysterectomy—take it all out!  I’d rather be dealing with “hot flashes” than OC Stage IV and Peritoneal Carcinomatosis.  But at least the Lord delayed that diagnosis until I was in “my golden years!”  So come to think of it, I’m glad it came “later rather than sooner.” And I'm certainly sorry to hear about your recurrence.

Now Beth, my real reason for writing is because you say you had a horrible reaction to DOXIL.  Can you elaborate and tell us exactly what you experienced?  I have read multiple posts on this site and you’re not the first one that wrote about Doxil and the bad effects they suffered.  My reason for asking is, my CA-125 markers started rising again in 4 months after my last series of 6 Carbo/Taxol treatments that ended in January of 2017.  For that reason, my oncologist said that this indicated that I was becoming “platin resistant”.  I didn’t like hearing that because my previous regimens had always knocked back the “progression” factor, till it seemed I had about a year of “feeling good”.  (Now all of us that are dealing with ongoing active cancer—“feeling good” doesn’t mean feeling as though we are cancer free—but feeling fairly well given our state of affairs. Extreme fatigue is always a constant companion even now.  

Having followed patients on the Esophageal Cancer site since 2002 when my own husband was diagnosed with advanced stage EC, I have witnessed so many patients that lived in denial when it came to finding a "cure".  They always felt that the “next chemo” would be the kicker, and that it would cure them of their cancer.  Many of them started out with a Stage IV diagnosis, and a cure wasn’t part of their prognosis, but they carried on as though they would be healed.

Now I’m not discounting the Lord’s ability to heal.  I would love to be healed, but I’m not entertaining that lofty goal and demanding a healing.  Sometimes the Lord uses “weak vessels” more than “strong ones” to manifest His strength in our lives.  Rather, I say to my dear friends, “You don’t have to pray for me to be healed, as much as I need you to pray that the Lord will give me the inner strength to bear up under whatever happens.  Pray that I will make the right choices, choose the right doctors, and not lose my mind and live in a state of depression as I travel on. "  So far He has done that.  I have a dear cousin that says, “Loretta, I can’t imagine life without you.  I can only pray for you to be healed.”  So I said, “Okay, have it your way but I need to be strong to face each day while I still have cancer.”  And I can attest to the fact that when I’m beset with fears, I don’t dwell there long because it robs me of the peace and good things that I still have going for me.

So bottom line for me is that my oncologist now says he doesn’t see the benefit of another series of Carbo/Taxol treatments which would be “Round 4!”  He suggests I try Doxil. BUT he is leaving it up to me, as I have requested.

After listening to my dear sisters here, I began to question the effectiveness of Doxil.  What I have read is in fact disturbing.  I’m saying, “I’d rather live with the Devil I do know than the ‘Doxil devil’ I don’t know.  The more I read, the more I became convinced that I do NOT want to begin a Doxil regimen.  I talked with my oncologist just again last week.  I respect him for his compassion for me and for his training of many years.  I know he knows what effects Doxil can have.  He told me that the "burning/stinging/blistering sensations are a common side effect.    But he thinks if I choose to go the Carbo/Taxol route again, I will be suffering the ill effects of another Carbo/Taxol regimen without the benefits.  HOWEVER, I have reached this conclusion.  I don’t know what I will do, but it won’t be DOXIL!  I have prayed about it, prayed about it, and then prayed some more.  Chemo is not a magic bullet.  There is no cure for my Stage IV diagnosis, absent a miracle.  And I continue to say, based on how I’ve seen others hasten their demise by taking yet another round of this and that, and always on a downward spiral, why do I want to subject myself to that?  I know that the Carbo/Taxol regimen has proven to provide greater results for the greatest number of women diagnosed with the OC that I have.  And as for the Peritoneal Carcinomatosis DX, the treatment is the same as for my OC. 

So what am I going to do?  At this point, I only know what I am not going to do.  I have read the side effects of Doxil.  If I take the full cumulative dosage allowed, my cancer isn’t going away, and I will be left even the worse for wear!  Here’s just one post that I read and entered into the discussion re Doxil.  https://csn.cancer.org/node/309820.  

So bottom line, after having said all this, “Beth do you care to elaborate on either your diagnosis and prognosis and/or the side effects that you encountered with Doxil? 

We ladies here are not always able to help those that we read about, but we all sympathize with one another.  Often we realize that, believe it or not, there are others suffering worse than we are.  (Especially 'GuitarDiva')  So we just “have to dance with the one whot brung us”—a wise old saying.  To me, it means—accept the reality of what I’m dealing with—learn all about it—and ask God to guide me in making the right decisions.  He alone knows the number of my days.  If I attend my own funeral each day of my life what is left to live for?  So I thank God for the sunshine and I thank Him for giving me the inner strength to survive.  Even as the “outer shell” is in a process of decay, I have real soul peace.  I thank God He has let me enjoy the presence of family and friends for this long, but alas the “golden years” do not come with a “body wash” that makes me look like I did when I was that teenager that “knew it all and had it all!”

And once again this saying though not original with me says it all:

“Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain!”

So may God bless you Beth, and may you find the best possible treatments that can put your cancer in remission so that you can continue to plan a “bucket list of trips” to places yet unknown.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV – DX Nov. 2012

P.S.  I especially like the “UK” site in Reference 4.  Over there they have universal health care, and having spoken with more than one person in the UK via the web, patients don’t have all the choices that we have here.  The doctors don’t always leave the “options up to the patient”.  Moreover, their options are limited as to what doctors they are “assigned”.  But I’m not here to discuss advantages vs. disadvantages of national health care.  A good amount of my money is being spent on health care premiums but I’m not complaining, because I do have a voice in what happens to my body!

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1.     https://www.drugs.com/sfx/doxil-side-effects.html

“Note: This document contains side effect information about doxorubicin liposomal. Some of the dosage forms listed on this page may not apply to the brand name Doxil.

In Summary

Common side effects of Doxil include: severe anemia, severe erythrodysesthesia syndrome, nausea, vomiting, diarrhea, stomatitis, erythrodysesthesia syndrome, alopecia, anemia, asthenia, bone marrow depression, neutropenia, thrombocytopenia, and anorexia. Other side effects include: asthma, syncope, severe neutropenia, back pain, chest pain, dyspnea, facial edema, fever, headache, hypotension, pruritus, skin rash, tachycardia, pharyngitis, and chills. See below for a comprehensive list of adverse effects…”

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2.     http://chemocare.com/chemotherapy/drug-info/doxil.aspx

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3.     https://www.navigatingcare.com/chemotherapy_treatments/doxorubicin-liposomal-ovarian

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4.     http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/liposomal-doxorubicin

“Side effects of liposomal doxorubicin

Find out about the side effects of the chemotherapy drug liposomal doxorubicin.

Tell your doctor or nurse if you have any side effects so they can help you manage them. Your nurse will give you a contact number to ring if you have any questions or problems. If in doubt, call them.

Contact your doctor or nurse immediately if any of your side effects get severe or if you have signs of infection, including a temperature above 38C.

Common side effects

Each of these effects happens in more than 10 in every 100 people (more than 10%). You might have one or more of them.

 Increased risk of getting an infection

 Breathlessness and looking pale

 Bruising, bleeding gums or nosebleeds

 Tiredness and weakness (fatigue) during and after treatment

 Feeling or being sick

 Mouth sores and ulcers

 Sore throat

 Soreness, redness and peeling of your hands and feet

 Red or orange urine

 Loss of appetite and weight loss

 Hair loss or thinning

 Diarrhoea or constipation

Occasional side effects

Each of these effects happens in 1 to 10 in every 100 people (1 to 10%). You might have one or more of them.

 Eye problems

 Damage to your heart muscle

 Numbness or tingling in fingers and toes

 Skin sensitivity to the sun

 Allergic reaction

 Indigestion

 Tummy (abdominal), bone, muscle or joint pain

 Skin changes

 Thrush in your mouth

 Cold sores

 Nail changes

 Feeling very sleepy

 Dizziness

 Build up of fluid

 Sore and inflamed tongue

 Liver changes

 Periods stopping

Rare side effects

Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them.

 Inflammation around the drip site

 Skin colour changes

 Reddening of the skin

 Confusion

About liposomal doxorubicin

• Find out about what liposomal doxorubicin is, how you have it and other important information

More information about this treatment

We haven't listed all the very rare side effects of this treatment. For further information see the electronic Medicines Compendium (eMC) website.

• eMC website

You can report any side effect you have that isn’t listed here to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.

• Report a side effect to the MHRA…”

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EZLiving66

Loretta, is there some place I can see all your posts?

Although I have uterine cancer, I think a lot of your posts can pertain to me.  I have not yet had a recurrence of my UPSC but in all likelihood I will and would like to be able to refer to your research.

Love,

Eldri

rejoycew

Doxil

I was on Doxil for 9 months with no side effects.  I felt well,  able to do household tasks, and to travel inbetween the monthly infuaions.  I know that others have experienced difficulties but I thought I should chime in let you know my experience.  It did maintain my CA 125 levels around the 125 to 150 range.  I had to 'move on' to another chemo as the protocol stated that heart damage can occur with more.  My ultrasound showed no damage.  I am now on Avastin which I know is controversisl to some on this forum.  I again have no side effects and my CA 125 has gone down dramatically.  After the inital round of Carboplantin/taxol, I was on gemcitobin which was not successful in lowering my tumor marker.  I know everyone reacts differently to these drugs and it is so hard to know what to do.   I am happy with Avastin so far and hope it will continue to work for me. We have to stay positive and enjoy each day God has ginen us. Good luck and Blessings to you.

Joyce

Jacjac2

I am currently on Doxil for

I am currently on Doxil for Uterine Cancer, second go round,  I am having the severe rash burning spots under arms, thighs, elbow, anywhere where pants bands rub me, etc.  I am a big busted women so not wearing a bra is out when going to work.  I thought about double layering clothes but then I get hot again and that effects the rash.  What creams have you used?