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349465 tn?1289081764

Update on Doxil Treatments

I haven't updated my experiences with Doxil in a few months.  I consider MedHelp a forum where each of us can help eachother be more informed about the ups and downs of battling OVCA.  We must all be aware that this forum is an amazing avenue for information that we would never have learned if not for these posts.  So....if more of us would post what is going on in our treatments, interactions with our Oncologists, side effects of the treatments..etc.... All of us would be more equipped to wage our our own private wars, regardless of where we live in the world.

Doxil is my ONC's chemo of choice for treating my recurrence of the beast.  The first four treatments and/or four months, I had very few of any side effects. Humphhhh..then came treatment #5 and it's been downhill since. In fact, I spent all day yesterday (Sunday, April 26th) at the emergency room.  Beginning Saturday night, after Jan's service, I began running a fever. It got up to 101.8, at it's highest point. I called the on call ONC at 1AM and we decided to wait until the morning unless my temp got much higher. I had no clue what infection could be causing the fever. The doctors wanted to make sure my white counts were high enough to fight off whatever was going on. While at the ER for seven hours yesterday, they did a CBC and everything was fine.  Therefore, they sent me home with a script for antiobiotics. Oh I almost forgot, my blood pressure was dangerously low when I first got to the ER. They gave me IV fluids which they said brought up the blood pressure. Go figure....What I would like to know is WHAT made it go that low in the first place? I've always had minor problems with HIGH, not LOW blood pressure. Good ole' Doxil, I guess.

"Nuf of fever talk. To date, I have horrible mouth sores. One of the sores MAY be infected which could be causing the temperature problem. I've just begun having problems eating.  I've had red dots all over my legs off and on for a month. They are below the surface, bright red sores. At one time, there were about 100 on each leg.  My skin has really been affected by the Doxil.  I have a brown tint to some of the skin on my body.  I've had burn marks on my back and under my arms. These have not been painful at all. My skin is ultra dry all over. I have itching attacks, mainly on my buttocks for some reason. Ever try scratching your buttocks while walking at the mall? LOL

My hands and feet are pink to red in color and are slightly swollen.  I get little blister looking things on my hands that go away with moisture cream.  Make sure you only use the lotions that do NOT have alcohol. I wonder why they even put alcohol in them anyway???

The ongoing side effect I've also had is of course, no energy. I had bone pain immediately after the 5th treatment. I was able to control it with pain pills. I'm also taking pain meds for the mouth sores. Otherwise, I would find that pain almost intollerable. And to think, for four months prior to this on Doxil, I had little to no side effects. I guess when they say it accumulates in the body, they are not joking.

I know I've said a lot here.  But, this is the type information I wish from some of you who are on other chemo treatments.  I know that none of our bodies react the same all the time. But, we can get an idea of what might be expected from reading it from others who have been there. We are here to help eachother battle this horrible cancer. I also realize at times, we just don't feel like typing. I've been there many days myself. But, if you can let us know what's going on with you, we kill two birds with one stone. We find out how you are doing AND we learn something to we may be able to apply to our own treatments, from the information you share with us.
17 Responses
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703858 tn?1274669802
Hey, thanks for the comments and suggestions.  Mom went back to the oncologist today and he took her off Doxil because of her extreme reaction after two treatments.  Her hands and feet are really swollen and it will take 4 - 6 weeks for the swelling to go down.  Nice.  Anyway, she's starting on Avastin next week.  We're running out of tools in the toolbox...but there still are a few.  I'm going to post a new question about Avastin.  

Denyc
Helpful - 0
653618 tn?1260603643
Hello girl>

I'm sorry your mom is having a hard time with the doxil.  I'm not trying to butt in here but the l-glutamine is a very common supplement that can be found in any health store or even in the vitamin section in your local grocery store.  I recommend the powder form but they also have it in pill form.  I mix it in with a smoothy for breakfast.  I don't know about it helping with mouth sores but do know it is recommended for neuropathy for hands and feet.

Good luck and let us know how your mom is doing.  I am thinking of her daily.

Teresa/doicat
Helpful - 0
703858 tn?1274669802
sorry.  it posted before I was finished.  My question about the L-Glutamine...where do I get this?

Also the swelling, any recommendations?

Thank you all so much for being so transparent and willing to share your ups and downs.  You help us all so much.

Denyc
Helpful - 0
703858 tn?1274669802
Teresa,

I'm with Alisa.  Thank you so much.  My mom has had two rounds of Doxil so far and just the last two weeks has had the mouth sores, but has also been really exhausted.  Today she went in to the clinic to get fluids for dehydration and hopefully will help her extreme swelling of her feet and hands.  She can barely get her shoes on and tonight couldn't hold a pen to finish her bible study.  To say she is down, depressed,  and struggling is an understatement.  She has been really emotional and totally overreacting to situations.  This upsets her far more than us.  I wish she would understand that none of us expect her to power through this.  She is not used to being the "needy" one and it is hard for her to ask for help.

What was the mouthwash recommended?





Helpful - 0
Avatar universal
Congratulations for your complex presentations.
I believe You must have a higher intake of liquids and to know the liquids intake and the urine volume daily.The problems you presented indicate that you made a hypovolemy (blood volume down), that s why you had hypotension. And after infusion blood tension was higher.You can avoid this by liquids...
Did you try any suplements.
What do you know about BIoBran???
Ainegeu
Helpful - 0
349465 tn?1289081764
You don't know how happy that makes me to know it was some help to you and your mother!  Thank you for sharing that with us/me. Tell her it's not all bad and that hopefully it will kill the beast for her.

Although I've had problems with Doxil...I doubt there are many toxic chemo's out there that all of us don't experience some side effects that are uncomfortable.  All in all, it is a tolerable situation.

Someone asked about my CA125.  It's 17 right now and I began at 9.  However, the lab the hospital was using has changed midstream.  I am still within their "normal" number. It tops out at 35.
Teresa
Helpful - 0
653618 tn?1260603643
Girl, got your PM and note on my puppy.  No, I missed this post somehow.  I've been on a few times this week but somehow missed your post.

I've just finished my 3rd treatment of Doxil and the trial drug EC145.  So far no mouth sores but have had the red peeling hands (feet just red no peeling).  I attribute them not getting soo be because of the ice gel packs during treatment and several times a day afterwards for about a week or so and the udderly Smooth cream and lotion.  I also found after this last treatment the red pin pricks all over my thighs and torso.  They really look like little pin pricks!  I've put lotion on them and they seem much better.  Finally, I have been having more severe neuropathy in hands and feet than with the taxol but i attribute this to doxil AND the trial drug, since I take the trial drug more often, I don't really recover.

So far, been okay with WBC though it dips a lot during week 3.

Teresa thanks for this post!  

Teresa2

PS:  I'll PM you tonight about other more important stuff (i.e. my Puppy!) LOL!
Helpful - 0
451053 tn?1237577749
Oh my gosh Teresa...thank you, thank you and THANK YOU!!!!!!  You have no idea how it felt to literally hang up the phone with my Mom (while she was still sitting at her Dr. App.)  jump on the computer to MH in order to find someone who had been experiencing Doxil...amazing!!!!  My Mom's Dr. TODAY has just changed her chemo to Doxil.  Just a few moments on the site and there you were...WOW!  Thank you all for your imputs and the time you take to share.  Whether the info is "good feeling" info or not it is still so comforting to walk beside someone through this journey.  Thank you Ladies'

Alisa
Helpful - 0
349465 tn?1289081764
Yes, I used the icepacks on my hands and feet for each treatment. I think that is the reason I'm not having as big a problem with my hands and feet that some women do.

Surviver Susie: Where do you get the G-Glutimine? Is it over the counter?
Helpful - 0
523728 tn?1264621521
Thank you for sharing this very valuable information, especially given the way you've been feeling.  Like Jane, I hope that the Doxil is doing it's job, not just giving you fits.  I will start a thread like this to inform folks about how Topo is affecting me.  
Wishing you better days ahead,
Sharon  

Helpful - 0
107366 tn?1305680375
COMMUNITY LEADER
Do you tie the ice packs that come in the Doxil kit around your wrists and ankles when you have treatments?  I forgot to ask that part the other day.  If not, maybe you could try that next time.  I used them for all my Doxil treatments, but I didn't have that many treatments, so I can't say 100% if they helped or not, but they couldn't hurt.  If you didn't get the Doxil pack, it comes with a tube of Udder Cream.  I'm sure you have your lotion of choice, but if you haven't tried it, it is pretty good stuff.  Oh, and the mouthwash I was talking about the other day is called Prevention Oncology Mouthwash.  You can get it at any drugstore or Walmart.  

I'm really sorry you had so much trouble this vveekend. I hope you're back on your way to feeling better.

Gail
Helpful - 0
Avatar universal
I am glad you updated us. I agree that we need to post about treatments to help others.  Thanks for the reminder that posting treaments is how we can help each other.
Arlynn
Helpful - 0
415684 tn?1257329318
Any chance the chemo nurses forgot benedryl or something in the mix?  You seemed to be doing so well up to this last round.  

Hang in there .. we are all with you in spirit.

Judy
Helpful - 0
408448 tn?1286883821
I am sorry you are having the side effects.  I agree that we all should do regular up-dating posts like this.  There is no way to guess how many will read this and be helped by your shared information.  I have had a rocky time on my last cycle, which is why I have been absent.  I will update on myself when I can get my head working a little better.  Marie.  
Helpful - 0
Avatar universal
Hi Teresa, you're having such a hard time with the Doxil, I feel so bad for you reading your post. You didn't mention if you've had a Ca125, or scans while your on Doxil, is it helping with the disease? I really hope that considering the side affects you're dealing with that it's kicking butt!

I absolutely agree with you about our posting about our chemo treatments, and side affects. The more information we have, the better equipped we are to make informed choices, and know what to possibly expect.

I think I had read something about cool showers, and sucking on ice pops, or ice chips.

I hope you get some relief, it's hard to see how tough it is for you.
Take care of yourself,
Jane
Helpful - 0
398758 tn?1248220291
I'm so sorry that you're having reactions at this point.  I do have a suggestion.  I got mouth sores from treatment one on carbo/taxol.  I made a mouthwash out of L-Glutamine, as recommended by a nurse online.  Wow.  No more mouth sores.
Best of luck,
Survivor Susie


Helpful - 0
415684 tn?1257329318
Well done, Teresa.  Did the MD have any explanation on why you reacted so much after round 5?  I dread the day I will try Doxil.

Had 5 days of topotecan last week .. now have 2 weeks off.  Exhaustion is about my only side effect.  Had Neulasta shot today for my white count.  

Some ladies here get topo once a week for 3 weeks with the 4th week off.

Judy
Helpful - 0
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