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Avastin and Avastin/Doxil Side Effects

Little Annie
Posts: 28
Joined: Jul 2018

Hi Everyone,   I am contemplating either Avastin alone  or Avastin/Doxil as my next step along this journey.   The published side effect look awful.   I am looking for first hand information from you ladies that you might be willing to share on how well tolerated these drugs are......thanks.

Universe
Posts: 7
Joined: Apr 2019

Hi Annie,

Some ladies here will respond. Meanwhile can you tell us if you did carbo taxol and how u tolerated it?

Little Annie
Posts: 28
Joined: Jul 2018

Six cycles of carboplatin and taxol,  25 pelvic radiation, 6 months of Herceptin.....recurrence....looking at next step.    Chemo was very painful....I don't want to do that again....hoping Avastin is not too bad.

DM_K's picture
DM_K
Posts: 51
Joined: Mar 2018

I just had my first Doxil and Avastin infusions today so I will have to let you know in a few days about side effects, I feel great now.

BluebirdOne's picture
BluebirdOne
Posts: 260
Joined: Jul 2018

Good luck and keep us informed.

Denise 

MMMT SURVIVOR
Posts: 6
Joined: May 2018

Hi Little Annie, I have been on Avastin only since October 2017 getting the infusion every 3 weeks and just had my 25th last week.  The infusion itself only takes about 30 minutes and the chemo is considered non-toxic so you don't lose your hair or experience the side effects of normal chemo.  So far high BP has been my most noticeable side effect but I have a cardiologist/onclologist who helps me manage things with medication.  So far so good.  I have started having some knee problems since January but can't tell if that's from the cold weather, arthritis (xray shows moderate osteoarthritis) or the chemo.  It mainly affects the right leg which is on the side where I had 30 pelvic ratiation treatments so it could be some side effect from that.  There are definitely risks but after having recurred 3x I decided it was worth a shot for me.  I recently asked my oncologist if I could have a colonoscopy recommended by my primary.  He replied, absolutely not!  Too much danger of bowel perforation.  So it's wise to alway consider with one's onc before taking any action.  I see that Cindy0519 and Jacjac2 responded to one of my messages last year.  It appears they were going on Avastin as well.  Perhaps they can chime in.  I wish you good luck and good health as you continue on your medical journey.  Sending a hug your way.

Mary Ann

evolo58
Posts: 293
Joined: Dec 2017

Most of the time, the Doxil used today is allegedly a version milder on your heart (liposomal). Some ladies have reported few side effects; some have been hit much harder. Actually, I guess, that's the case with most chemo drugs or drug combos. Doxil hit me a little harder than most (the doctor told me I had the nastiest case of Doxil rash she'd ever seen!), and I find issues with constipation (not uncommon with many chemo drugs in general). Smooth Move tea, stool softeners, a better diet ... that sort of stuff. Oh, and a month sore or two/dry mouth. That can be a complication with Carbo/Taxol as well, I believe. 

Fatigue, of course. I found Doxil-related fatigue somewhat  worse than C/T. A little nausea once in a while... sometimes a couple of weeks after teatment ... but a quick pop of an Ondasetron pill takes care of that. I think someone ... was it here? ... advised me to keep an Ondasetron pill on me just in case, and that seems to be sage advice.

Back with carbo/taxol, the nasty stuff kicked in some time on Day 2 or 3 and went away after one week. In my case, nasty Doxil effects kick in after about a week to ten days. I feel better after two weeks (I get it once every four weeks. That is QUITE enough, thank you!)

Avastin ... not nearly as bad re side effects. Mild headache the first day or so. Tylenol takes care of that. Very occasionally, constipation. See routine above to take care of that. BP is the major thing to watch for, though. Most people I know on Avastin do have to go to a BP medication at some point if they haven't already. I just went on meds a couple of weeks ago. Some of my increase, though, may be stress- or thyroid-related (I went hyper.) I don't know or think I can blame Avastin for ALL of it. Fatigue during the first few days. 

evolo58
Posts: 293
Joined: Dec 2017

I posted this on the Ovarian board, so please don't mind if I copy/paste.

(EDIT ... OOPS! I would have been nice if I DID copy/paste. Sorry!)

Doxil and Avastin work great for most women. 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 Phase II clinical trial (ONC201), and still recovering almost two months later from Doxil/Avastin. (Long story re the Vitrakvi .... it wasn't quite the panacea we hoped for. I mentioned it somewhere in my profile.)


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 you're still concerned. Make noise!

EDIT
I admit to being concerned because my CA-125 on Monday skyrocketed from the 500s (well, I WAS off chemo for a few weeks) to 851 ... the highest it's ever been. However, I had a very nasty sinus/bronchial  infection (what I call "the crud" because honestly, I have NO idea what this nasty piece of work was) starting last Friday that made me so weak I couldn't even eat much or get out of bed for two or three days, and I'm still has bouts of coughing fils (though not as violent) from the crud today. The doctors know about it. I read that a cold can elevate a CA-125 (one lady on an ovarian cancer board reported over a hundred points), and this was NO garden-variety cold. I'm praying that this crud caused that high an elevation. 

MAbound
Posts: 964
Joined: Jun 2016

Wow! You sure have been dealing with a lot!

While your doctors know about your "crud" you don't say if you are or have been running a fever with this (that would sure elevate your CA-125!) or if they have done any testing like an x-ray to be sure you aren't having any cardiac issues like the tampanade you had earlier or congestive heart failure due to any impact on your heart from the treatment you had.

If your legs have any edema besides the "crud" you are having, you'd need to be certain to tell your doctors about that because its a hallmark symptom that helps differentiate between strictly respiratory and cardiac issues and means you'd need at least an xray to confirm what the problem is. This is not to cause you alarm, but I thought it might be useful for you to be aware of this considering all that you've been subjected to.

You can test yourself for edema by being aware of if you legs feel "tighter" than they usually do, especially as the day progresses and you've been sitting or standing and by using your finger to press the top of your foot or below your knee. If it leaves an indent that takes a bit to recede, you have edema. The deeper the pit, the more severe the edema is. That symptom kind of goes out the window for usefulness, however, if you normally have edema from varicose veins.

Hugs and prayers that things get better for you as time progresses.

 

evolo58
Posts: 293
Joined: Dec 2017

Most of my symptoms seem to match acute bronchitis. I did have a fever, but that went down by the day of the first clinical meeting (and was down for more than 24 hours). Still, if a cold could elevate a CA-125, I would think that bronchitis could send it sky-high, too!

My BP was always higher; never too low, so I don't believe I had tampanade. But whatever happened, while I might try Carbo/Taxol for a while in a pinch in the future, I never want to be within 90 yards of Doxil again, and would really not have to deal with Avastin. I read some Doxll horror stories here; both the older version and the newer version. I was on Doxorubicn Liposomal, the so-called gentler version. Gentler, my !@#$. It seems that when it works, it works great for most, but if you're one of the ones whose body isn't playing nicely with it ...

No edema. The doctors tested for that in the physical prior to the trial. 

On a good note, my BP is FINALLY starting to cooperate. Still not ideal, but much better than that one time I reached 182/111 after climbing a flight of stairs. I'll take it for now. Now that my pulse also seems to be going down a little as well, I finally feel more confident about doing gentle exercise. I was always afaid to do it with such high pulse and BP readings. I mean .... 182/111 from slowly climbing a flight of stairs? It went below hypertensive crisis in a second reading shortly after, but was still really high for a while. My last home reading was 135/81 ... still pre-hypertensive (particularly with meds), but I deeply appreciate the improvement!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2680
Joined: Mar 2013

evolo, I'm sorry I can't remember all your specifics, but are there any clinical trials available?  

https://clinicaltrials.gov/ct2/results?cond=Endometrial+Cancer&recrs=a&age_v=&gndr=Female&type=&rslt=&Search=Apply

Again, I'm sorry I just don't remember

evolo58
Posts: 293
Joined: Dec 2017

An ONC201 trial. We'll see what happens. I have other chemo options on the table, but I really think I need some time for my body to heal better, and from the swiftness of both my oncologists (main and medical) to have me go clinical a little sooner than traditionally, it appears that both fully agree. I know my medical oncoloigst openly agreed with me. 

One thing that I have noticed ... much more in the last year ... is that it does not seem unusual at all now for oncos to recommend non-chemo alternatives for those who have had a rough chemo series, rather than simply switching to another chemo combo right away. Maybe it's pushing toward research, maybe it's more of a focus on quality of life as well as quantity ... or both. I'm guessing both. 

barnyardgal
Posts: 245
Joined: Oct 2017

Evolo,

Wow, you have been thru a lot. I'm so sorry. I had the older doxil (adriamyacin) and was terrified of potential heart issues. The drs wouldn't do the doxil lipsomal as it isn't for frontline treatment. But it is supposed to be safer for the heart but cause more rashes. That's so upsetting that it caused so many issues for you.

One thing I did hear about doxil lipsomal is that it causes the ca-125 to rise significantly during treatment. So that might be what's causing the spike.

Hope you feel better soon!

evolo58
Posts: 293
Joined: Dec 2017

Then the CA-125 drops. But mine was odd. WHY am I not surprised?

My CA-125 plummeted during the first two treatments, then rose after that.

The info about the rashes make me smile, but not in a happy way, if that makes sense. More like a grimace than a smile. Since having that experience, I have read of one or two ladies who had the same experience. These are nasty, nasty, itchy rashes.

Ever since I was first diagnosed, I have had this sneaking suspicion that something causing inflammation is not helping any. Nothing dire ... just a money wrench with the CA-125. But I have no proof. Just a weird feeling.

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