Ixempra-My experience
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Hi lori
Have not had that problem really...at least yet. I have my 4th infusion tomorrow...dreading it! Will let u know if this pops up. My horrible pain is better since dosage was lowered, but still have nausea, pain and tingling in feet, some pain in wrists and knees, still CANNOT sleep unless I take some pills, and I also have dizziness and some vertigo like symptoms some times.
Will keep u posted on how this next one goes. Hope the depression gets better. I had a lot of that on tamoxifen and it was not fun.
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What did the doctor say about the dizziness and vertigo? My doctor wanted to give me meds. But I didn't fill the script. I just don't want to add another medicine bottle to my dresser!
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Hi Lori,
He didn't really focus on this much with me. I told him I feel drunk the first week after and have dizziness and vertigo and he said it was just a result of the stuff in the chemo. I don't think he offered me anything because he knows how adverse I am to taking meds in general.
So finally had my first dose without steroids. Woo hoo!! I think I have slept better and only other diff I noticed was that I got real nauseated yesterday. But yes I did take my med for that and it works like a charm. This morning my joints are hurting and I ate breakfast and started feeling nauseous again....and I thought eating helped this but obviously not.
ok but here is what is bugging me the most....I am getting the chemo HOTFLASHES...Gosh I hate those and did not have them until up to now.
Hope all are doing well!
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I was first diagnosed in 1997, then was diagnosed with mets to bone in 2002. Hormone therapy (removal of ovaries and Zometa) worked for 21 months, but that eventually wasn't effective. Since late 2004, I have been on Abraxane/Avastin and it's worked for over three years, including after the cancer spread to my liver a year ago. I just finished another four month cycle and found out this morning that the Abraxane/Avastin didn't work this time. There was more progression in the liver, so it's on to Ixempra starting next Monday.
I went online to see what I could find and came across this forum. I am a little scared and dreading this new regimen, since I've been feeling so well. But hopefully, my cancer will respond to it. My doc says my hair may not fall out since I've been on Abraxane so recently, but I'm guessing he's giving me a best case scenario based on what I've read here! My hair is only about 2 inches long, but it finally feels semi-normal.... oh well, small price to pay if the drug works.
I just wanted to say how much I appreciated finding this discussion. It's comforting to find others who understand what it's like to be going through the same thing. So that's it, I just want to say God bless all of you. Oh yeah, it's 2:30 and I can't sleep! I cant imagine what it will be like after next Monday!
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bump
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My head is not completely bald yet. I have very light, fine peach fuzz.
I was totally depressed when I found out I had to start Ixempra. I considered it the "last resort" chemo. But I no longer feel that way. I have learned that there are other chemos available to us and that our oncs. want to try to give us some time without chemo. So they are hitting us with something strong in the hopes of becoming "stable". That is the only way I keep going day in and day out. Hope it works for you too!
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I'm still continuing on Ixempra. Just had #5 on Thursday.
My hair didn't completely fall out either. I've been wearing the fuzz like Lori.
Other side effects: fatigue. And I experienced a more persistent pain on the second week of last cycle. I don't think it's bone pain though. It seemed to be more of a muscle pain in various places of the body. So I'm kind of nervous what it would be like this cycle.
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Hi all,
Had my 4th infusion last week. Since doc lowered dosage pain is much better. I still have a few days where I have random pains all over. Feels like electric shocks. Also get pain in my joints and especially in my wrists. Still nauseous too. Also think my hair is growing back a bit with lower dosage. Have a few eyebrows growing back too. I also am getting chemo fatigue and hotflashes...oh joy.
had CT scan on friday. Hoping for some positive results. From what I can feel, things are shrinking. hope to be done with this by Sept at latest.
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Hello everyone!
I had my 2nd Ixempra infusion on July 3rd and also began the Xeloda. I'm now taking 4000mg (2000 2x per day). My first week seemed to go ok on the Xeloda. However, the past several days, I am experiencing issues with my mouth - burning on the tongue, bleeding gums when I brush my teeth, chapped and dry corners of my lips where people typically get cold sores. I do not have a history of getting cold sores. I'm using a lip ointment made by Arbonne to keep the corners moist. It seems to be helping. I'm thinking this is all Xeloda related. I wish I could get rid of the burning on my tongue. I've tried using Biotene and Orajel to rinse out my mouth with several times a day, but only get minimal, if any, relief. So far, no hand/foot syndrome, but I am on my guard.
I'm hoping lowering the Xeloda dosage will help. My next appointment with my oncologist isn't until the week after next. So I'll hang in there until then and weather through this the best I can. My fatigue level isn't too bad and I am thankfully able to work on a part-time basis - no more than 20 hours per week. But it helps me to stay busy.
Thanks for listening and my very best to all of you as you fight the good fight.
God bless!
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Hey lifeline59 - I am on 10 Xeloda per day. 5 in the am and 5 in the pm. I chase the xeloda with a nasea pill - ondanestron. I haven't had any nasea. I have had some food aversion. I am also on the flat tastebud train. I read somewhere that if you suck on ice during your infusion that that helps the taste buds stay alive. Maybe a wifestale but I'm going to try it. I am on my 3rd infusion starting tommorrow. LoriFL - I read your post on being depressed on the Ixempra. I have been more emotional than usual. I am usually boundlessly happy but I have been in the dumps since I got my "chronic" diagnosis. I am going to ask the onc tommorow about the depression. Thanks for your questions. They lead me to ask my own.
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I know what you mean..."chronic". Just another name for this s**t!
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Well - I had the 3rd today. So far I feel great. I have pre-medicated myself against the leg cramps and the nasea. So far so good. I asked my doc about the depression. He said I was doing great considering the timing of them telling me I was chronic (4 treatments away from being done
!)I would say that was bad timing. I have some b c cells in the lining of my lung. But guess what? That is just a fact. It isn't the truth. The truth is that God is in control and I am promised healing - so jokes on them (the docs) I am going to be around long enough to irritate all of them. I have to get my 13 year old graduated and I want to see both of my daughters married and be a grandma. Considering my oldest girl is 18, I'm gonna have to stay around alot longer than their facts are reporting. So bring on the Ixempra and the Xeloda. I am going to be cured! But LoriFL I didn't get any anti-depressants. I think that they outta give you a drug that makes you feel euphoric when you get cancer. I guess I'll write that on my complaints list. Hang in there - this is all smoke and mirrors. Don't let it get you down.
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I forgot to say that I read about acupuncture and chiropractic methods that can lessen fatigue and increase energy. I teach Speech and Drama at 2 junior highs and I am going to have to find something that helps me work. I will let you know what I find out. Oh, and I am going to try this herbal vitamin thing called Mangosteen. My onc said it wouldn't hurt me. He doesn't really get up and cheer for anything that he hasn't come up with but that is not going to curb my enthusiasm.
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kateva,
I used Mangosteen my first go around. I do believe it helped me keep going, and I never had even the flu all through 16 mths of chemo. I hope it work's for you. Can you take B-complex? This also help protect your nerve and help with fatigue. I'm watch you ladies on the thread closely and hoping, I will not have to take this one. I already have bad neuropathy and my doctor wants to use Imxempra.
Flalady
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I had my first Ixempra on Monday. I barely slept before, because I was really nervous. the infusion was slow, but I felt okay after. I was scheduled to fly somewhere with my sister the next morning and did. I was a little nauseous when I was getting ready, but it passed. Flight went fine, but as we were getting off, suddenly, I was very light headed and really sick to my stomach. Barely made the 10 minute drive to where we are staying. Called my doc's office, and told them my symptoms of super nauseated and very light head and headache. They thought it was dehydration, not Ixempra side effects. I rested and drank tons of liquid the next day. Woke up this morning feeling almost 100% normal.
I am taking regular motrin for some body ache, but otherwise feel pretty decent. I think this may be because I am not taking Xeloda... not sure, but seems like most other people are having both.
I was totally freaked out that the Abraxane/Avastin had stopped working and really scared about this new drug, but I feel halfway decent, and am really hoping it works.
Oh.. insurance note. Blue Cross mistakenly approved my Ixempra, but not the Avastin that goes with it. So I will have to appeal to State Board. I hate Blue Cross.
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Barb,
I suprised Blue Cross did not approve your Avastin. They approved it for me 2 1/2 years ago before it was in trials. I just started taking it again. This might be because we are in different states, Glad you feel better.
Flalady
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Thanks, FlaLady. I've been assured they'll eventually have to cover it, but that I'll have to jump through the hoops with the appeal. This happened with Abraxane/Avastin combo too. All from a company that netted $3 billion a couple of years ago....
I can handle, just annoying that they make it difficult when we are already dealing with plenty.
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Hey Flalady - I have done pretty good this round. I have taken my nasea and pain meds like on a schedule and it has decreased my SE! I am glad to hear about the mangosteen. I will start it up. I can take the b-complex too. So yeah - bring on more pills. The one thing that I have noticed is my appetite is really decreased. I can't even eat half as much as I did before. I am overweight so there is no worry that I will drop down too much. My taste buds have flattened so bad that I can't taste sweet. Bummer is that I love food but the weight loss is a good deal although my onc is not wanting me to loose anymore. Don't be afraid of the Ixempra/Xeloda combo. I think we just need to be proactive on the side effects and figure out what will trump them. I'm hoping tooyoung gets some sleep. That is worrisome. I am definetly a Tylenol PM abuser. But it is working. Thanks for the talk backs, ladies.
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Okay, ladies.... turns out I am a big fat liar. I thought I was "almost 100%" just 3 days after 1st Ixempra. Spoke way too fast I guess. My body is aching all over, my gums are very tender and bleeding when I brush and use my waterpik, I had a bloody nose today, and my mouth seems like I may be getting sores inside my lips. I'm not on Xeloda. I've been taking motrin several times a day, but it seems that isn't enough. I don't have any pain meds, but I think he will write an Rx for Tylenol 3 (with codeine) if I ask for it.
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Barb,
Water pik, normal mouth wash and toothpaste are a little hard on chemo patients mouths. You may want to start using Biotene mouthwash and toothpaste. This also puts back in healthy bacteria in your mouth that will help protect your gums.
Kateva
Try the natural sweeter "Stevia" (sp?) this stuff can be super duper sweet so you maybe able to taste it. You don't gain weight with this because it not really sugar. I glad you doing good, keep up the good work. You may want to try a natural enzyme's that put's back the enzyme's you need to digest food in your stomach. Chemo kill's those enzyme's because chemo settle's in the stomach lining. You can get them at any health food store.
Flalady
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It is weird.. I became dehydrated Suinday night without realizing it. Got up to go to the bathroom and fainted. My blood pressure plummeted. So I spent all week on Immoduim and anti poop shots in the hospital!
Yes, we need to unite and figure out how to overcome these SE collectively!!
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Thanks for the feedback you guys. The dehydration is scary. I am drinking water like crazy.
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GLUTAMIN POWDER FOR MOUTH PROBLEMS. Talked to my nurse practitioner and she says it's caused by the loss of an enzyme, which can be replaced by using Glutamine powder. She says one gram a day. It's available in pill form, but to get the required amount, it would require taking 20 pills three times a day! So powder is the way to go. I'm gonna get some today. It's at the health food store. She says it should take care of of sore mouth, gums, etc.... I'll post an update after I've tried it for a few days.
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sounds very interesting... may I ask, what color is your tongue? Mine has turned white!
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Barb,
I'm with you re: Blue Cross. I had Avastin+Taxol in 2006. Had to fight them for Avastin. Then I started wtih Avastin+Ixempra earlier this year in April. Had to fight them again. Originally they approved Ixempra monotherapy, but because I took it with Avastin, they decided they wouldn't cover both the Avastin and the Ixempra. But fortunately their decicion has been overturned by the state review. What state are you in? I'm in California.
Blue Cross has the policy of denying Avastin used for breast cancer unless it's given with Taxol and it's given as first line of therapy. They have a "special" Avastin policy posted on their website. They don't seem to have any policies for other drugs.
Hope you win your appeal too. It's just not right that they keep second guessing decisions made by your and my oncologists.
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Barb - does the enzyme help with taste buds? I don't have any mouth ulcers or sores just no taste.
Lori - my tongue is white.
I have an appointment on Tuesday with a chiropractic/accupunturer. He apparently does both. I told him my situation and asked if he could help with side effects mainly fatigue and leg pains. I so far have not had the hand and foot sores. I will let you know how it goes. I am hoping that he figures out how to give me boundless energy so that I can teach in the fall. How hard can that be? Also think I'm going to up my water consumption since dehydration is an issue. That might help some things. I have laid off of the cokes. I am a big tea drinker, more water couldn't hurt. Today is my 3rd day from chemo and tonight I did have some leg pains. I am going to take my hydrocodone/Tylenol PM cocktail and see if I can't sleep it off. I am so afraid one of you is going to discover that vigorous exersize is the answer to elimination of leg pains. I'm not much of an exersize girl. But whatever works I will be trying. Think happy thoughts. Cancer can't keep me down.
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Just checked out my tongue, and it is still pink, but heading in the whitish direction. Now I know what I have to look forward to!
I don't think glutamine helps with taste, just the sore mouth - in my case, bleeding and sore gums. I guess it's actually an amino acid, rather than an enzyme which I said earlier. (I'm no brainiac!) I thought she told me one gram swallowed orally with water, but in looking at on-line articles, it looks like they mention 4-6 grams more often. I'll follow up on this with my nurse practitioner.
PineHouse, I'm in California, and I've heard Blue Cross will eventually approve, but will make me jump through the hoops before they do. It seems so unethical to me, because I guess they hope people won't appeal, so they won't have to pay. Particularly those of us with mets, they figure we're beyond hope, and seem to ignore the fact that women like us can live for many many years when we have access to good medical treatment and insurance to pay for it.
Kateva, I am back to regular exercise first time tomorrow morning. I did exercise continuously through my last 4-month treatment with Abraxane/Avastin, and I felt tons better than I had during all my past chemo courses. And my hair didn't come out like it usually does. It did thin, but not noticeably. Nothing in my routine was different, except my diet was much healthier and I exercised very regularly... It sure is hard to get motivated about exercising, though, when you don't feel well! I took the week off, and am back to the gym tomorrow morning.
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Well that's just great, Barb - so now I've got to get back on the treadmill or the mini-tramp. I had a feeling someone was going to ruin my perfectly good convalesing with exercise. Oh well back to the grind. I'm sorry about your mouth ulcers. I have been going to MD Anderson in Houston and they gave me some mouth rinses in case I had mouth problems but I have never had to use them. They are Xyloxylin Suspension and Carafate Suspension. I can't speak for how they work because I never have had to use them and also someone told me that they may be an MD Anderson special concoction. I have no idea. I thought I would pass the names along in case you might can get them. I am not in Houston, I live in Midland but I have docs in both places. Houston calls the shots and Midland follows the orders (suppossedly). I am suppossed to go back to Houston on the 18th and 19th of August to recheck. I was just there in July. I am hoping for a miracle. It can happen. Hang in there and if you feel a burning in your ears its me talking bad about you for getting me up off of the couch (just kiddin')!
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Hi gang
have not posted in a while. Am 2 weeks past my 4th infusion. still doing much better with reduced dosage. Nausea and pain are much more manageable. This time had a burning sensation down my arm up until about a day ago. Fingers and hands hurt with too much activity. Balls of feet also hurt when I go for my walks. Still struggle with sleep a bit but much better now that I am not doing the steroids. Did scan a week ago and doc says no new growths but tumors still present (but smaller) so have to continue this stuff for some time. hopes to be done by fall.
I too have a funky mouth but not bad in comparison to how it was with AC/Tx. Hope u guys are doing well.
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Thanks for the update TooYoung, glad to hear things are better, and really appreciate that you started this thread. It's been a big help to me as an Ixempra newbie.
Hugs to Kateva, I'll check out the rinses. I do have my Glutamine and mouth seems better, we shall see...... and if my ears are burning, I'll smile knowing you are MOVING! Someone loaned me Crazy Sexy Cancer Tips today, and she has a whole chapter called "Eat Your Veggies and Shake Your Ass." So don't forget the veggies, too!
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