Ixempra-My experience
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If you feel dehydrated, CALL YOUR DOCTOR!!!!!. I spent all last week in the hospital getting treatments for it and it was the second week after my infusion.My stomach always hurts to some degree. I have been able to ignore it most of the time. But the fatigue is tremendous! I am amazed that you are working. This stuff is very toxic!!!.
For my past treatments, I didn't have as many calls into the onc. office as this time around.
Please let us know how everything went!
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Chris - the acupuncture is helping with the fatigue. I don't think that you can get around that first 2 days but I am gonna try. My next infusion number 4 is next Tuesday the 5th I am going to the acupuncturist the morning of the 6th. Take your meds. If they give you something for pain - take it. Take it like it's prescribed don't wait to have the symptom at least for the first 2 days. I have some that is every 4 hours - I take it every 4 hours and my SE are manageable. Also take your night time meds. I have been taking tylenol pm religiously but I have some cough syrup that is a nite nite friend too. Ease up on this after the first couple of days but just do it until then. And then start planning something. Maybe it's a shower or a lunch out or a walk to the mail box. Just do something and then reward yourself for the effort with a happy nappy! This Ixempra is one bad mother scooter but we don't have to let it know that it is. Fake it till you make it and then come tell us here how really bad it is. We love you and we are with you. Same boat - Hey Barb - where do you find those juicer people? I'm ready to hire one out. I'm tired of cleaning my juicer after one apple grape combo. (Wasn't I adventurous with my fruit?)!
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Oh and I have a new SE that just popped up. It is a really colorful rash on my hands and arms. Little red bumbs that are not raised just brightly colored. My onc nurse said it is probably from the Xeloda instead of the Ixempra. Praise to the saints above. I don't want to give that Ixempra any more credit than is due. It doesn't itch so it's all good. The new black - haha!
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Ok so had my 5th infusion last week and have been hesitant to post, but this has been the easiest so far! It is weird cuz I keep waiting for the SEs to show up. But it's almost one week after and wow what a difference. I did have Zometa this time with the chemo. Do you think that is what made it easier?
I have really only had one really bad day. Nausea has been minimal compared to other times, have had some feet pain, but also manageable. My wrists normally are killing me by now and I have not had this so far. Hardly any shooting pains either. So strange. Am more fatigued this time but not working right now so naps take care of that.
Do you think that I have just gotten used to ixempra? Hmmmmmmm, curious but VERY grateful!!
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Just had my #6 on Tuesday!
I'm jealous of you, Tooyoung, your SE's are lessening. My SE's are getting worse.
On my cycle #1, everything went great. I couldn't even tell I was on chemo.
Starting cycle #4, I get upper back soreness and persistent arms/hands pain, causing lack of sleep. They did get better toward 3rd week. But the painful period got longer in cycle #5 I actually never completely bounced back at the end of the cycle.
Now working with onc to find a pain pill that would work. They suggested Vicodin first, and if that doesn't work, we're going to try Neurontin.
And yes, acupuncture does work, but it only lasts an afternoon, and treatments are getting expensive so I don't go everyday.
Barb, because of your post, I was encouraged to take glutamine (already suggested by an integrative oncologist at UCLA a few months ago). I don't use it for mouth though, but I'm hoping to get a little muscle support.
Chris, have you tried sleeping pills like Ambien? Also, there may be vitamins/supplements that support the nervous system (relax anxiety). Just make sure they're not on the "do not take" for Ixempra, like Barb said there's this list of things that interact with the CYP enzyme family.
Well, I just hope that this Ixempra works for everyone like it's supposed to..
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Please tell me if you are working and how you deal with the fatigue. I am supposed to go back in the classroom starting August 11th and am ver concerned.
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I am a school teacher Lori and whether I can do it or not I will be working come the end of August. I am trying out this acupuncture to see if it can take me through the first couple of days after infusion. That is my plan. What is your diagnosis? You may be able to take disability if you have to be out due to SE. That is also in my plan if things don't work out great. But I am hopeful. We can do this. I'll be sending the "we can work" vibes your way.
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Hi Pinehouse,
I just wanted to let you know that "Neurontin" is for "nerve" pain. Are you showing signs for neuropathy? I hope this works for you it didn't for me. I tried a few of them. Lyrica seems to work best, along with acupuncture & massage treatments. Both expensive but they keep me mobile. I also purchase online a "mirco-current" hand held tens units. For around $120 you can give yourself lelectric point acupuncture in your home. You just need to have someone to show you the basic's on how to use. It not hard and it does help.
Flalady
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I am having a mtg. with my onc. tomorrow before chemo to discuss maybe lowering my dosage or something (?) and then on Wednesday I will be having a big pow- wow in school to discuss a game plan. They are more than willing to work with me. I am just worried I won't be able to hold up my end of the deal.
Kateva- My dx is DCIS with mets to liver, bones (my spine, pelvic bones, shoulder blades, and right knee, imagine, my knee!!), and most recently, lynph nodes around my lungs.
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Well, they lowered the dosage... I'll see how the next 2 weeks go!
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Yeah lori!! I know lowering it helped me so much. This 5th infusion was the easiest so far. Good luck! Keep us posted.
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Hey Lori - you just do what you can do and if you don't feel up to it then lay down and take a nap. Subs can handle it when you're not there. But don't give up. Teaching will make you get up in the morning and that is worth something. I will be thinking of you. I start back on the 15th.
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Just out of curiosity, do you guys know what your dosage is exactly? of the Ixempra? I am having 2nd infusion tomorrow, curious if we are all about the same dosage-wise.
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The dosing recommendation is 40mg/m2. I think they usually determine how much m2 you are with a formula (which I don't know) using your weight and your height. I get a total of 64mg of Ixempra every 3 weeks, and that's based on the 40mg/m2. I'd be interested in what everyone is getting too.
Honestly, I think I'm quite done with Ixempra, unless I'm getting spectacular result on the next scan (unlikely, because last scan was only stable). There are quite a bit of weird side effects beyond the pain itself, I was getting episodes of gasping for air followed by numbness/tingles in various body parts (happened on day #3,5,and 6). Sounds like the "allergic reaction" you usually get during infusion, except that mine obviously is a delayed reaction.
Flalady,
Thanks much for the tip on micro current. I will look it up. Sounds like it would help with a lot of things.
Best for everyone...
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Ii truly didn't know what my dosage was until it was lowered and I asked abbout it. I was getting 80 of something and now I got 50. but I don't know what the unit of measure is. Infusion # 4 was yesterday...so far so good!
My school pow wow went great! they are so understanding and kind. I worked out a schedule that I will have the same days off each treatment cycle. That eases my mind some. Hope I can do it!
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Lori,
Glad your meeting with the school worked out good for you! Hope you feel better with the reduced dosage.
Hugs,
Kasey
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Hi Gang!
I'm at work...Been catching up on all the posts. I really appreciate everyone's feedback. I've been rinsing my mouth with the baking soda/salt/water concoction and it seems to have helped reduce the burning tongue and bleeding gums. There is still some gum bleeding when I brush teeth, but not as bad as the previous cycle. So the bicarbonate in the baking soda must be doing the trick. I function with a certain consistent level of fatigue, but for now, it seems to be manageable. Today, I see my onc and also do my next set of labs at the hospital, including the CA2729. Hopefully, your feedback about false positive results will be true and I'll start seeing a decrease in the numbers.
I'm going through a bad set of the blues right now. I'll share my reasons later this evening as I really need to get back to work. But thanks for listening. I'll post again tonight.
My very best to everyone!
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Anxious to hear from you and hopefully we can "talk" through the blues. That's what we are here for!
Hoping to hear only lower numbers from your lab work!
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I have good news, girls! Just received a call this morning from my onc's office that my TMs went down by 500 points! YAY!!!! I can't tell you how THANKFUL I am. Thank you SOOOOO much to Lori, Kateva and Barb for all of your encouragement to me.
The timing of this news could not be better. It may help resolve why I was in the blues for the last 48 hours which I will now explain to you. On Wednesday afternoon, I was on the phone with my case worker from Mutual of Omaha. My employer contracts our short-term and long-term disability benefits through them. I started my STD on March 12th when I went on medical leave for chemo embolization on a large met growth on my liver. I was told that my 6-month end date would be September 10th. After 2 months, I went back to work part time thinking that I would be able to extend STD out longer because I was reducing the weekly benefit amount that I was receiving. Our HR rep was under that impression as well.
Well, it turns out that my case worker tells me that it plays no role in determining when STD ends. My deadline is still scheduled for Sept. 10. At that point, I would have to switch to LTD. My HR guy tells me that at that point, the company is no longer obligated to provide medical benefits to me and that I would be released to Cobra as I wait to be placed on Medicare. My hubby is also covered under the benefits they offer. Based on our current income, we would never be able to afford monthly Cobra payments on top of our other bills. And it's my understanding that SSI is so back-logged that it could take up to 1-2 years before I receive approval for Medicare. SOOOOOoooo, that would mean that my hubby & I would have to sell our home (which is half of a double), pay off as much debt as we can and move into a smaller apartment. YIKES!!!!
I was in MAJOR STRESS mode and lost a complete night's sleep over this. I went back to my boss yesterday and asked him if he could do anything to persuade the owners of the company to bend the rules in my case since I was working part-time and still viewed as a valuable employee by my boss. He said he would do his best. That was before learning of my latest TM news. I alerted him about it this morning and he was very happy for me and will relay the information to HR.Now that I have hope that the Ixempra/Xeloda regimen may be working, I have some ammunition to bring to the benefits discussion with my employer to encourage them to extend my medical benefits. The hope is that if it is indeed working, then I would be able to return to full-time employment once the treatment is scaled back to a maintenance dose. My 4th treatment cycle is coming up next Thursday. Two weeks later on Aug. 28th, I am scheduled for CAT and bone scans which will tell us a lot more, hopefully reflecting the TM decline.
My husband and I have been in deep prayer about this whole thing and it was tough surrending the emotional upheaval back to God, but He has been so faithful to us in this entire journey and He seems to be doing something special here, at least for today. Thus I can go into the weekend with an array of hope and definitely on a much more positive note, thanks to my precious Lord and Savior Jesus Christ - who is my TRUE LIFELINE that I cling to every moment. He truly does deserve all the PRAISE!!!
Thanks again for listening and for all the encouragement and support.
Warm blessings to ALL!
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I have good news, girls! Just received a call this morning from my onc's office that my TMs went down by 500 points! YAY!!!! I can't tell you how THANKFUL I am. Thank you SOOOOO much to Lori, Kateva and Barb for all of your encouragement to me.
The timing of this news could not be better. It may help resolve why I was in the blues for the last 48 hours which I will now explain to you. On Wednesday afternoon, I was on the phone with my case worker from Mutual of Omaha. My employer contracts our short-term and long-term disability benefits through them. I started my STD on March 12th when I went on medical leave for chemo embolization on a large met growth on my liver. I was told that my 6-month end date would be September 10th. After 2 months, I went back to work part time thinking that I would be able to extend STD out longer because I was reducing the weekly benefit amount that I was receiving. Our HR rep was under that impression as well.
Well, it turns out that my case worker tells me that it plays no role in determining when STD ends. My deadline is still scheduled for Sept. 10. At that point, I would have to switch to LTD. My HR guy tells me that at that point, the company is no longer obligated to provide medical benefits to me and that I would be released to Cobra as I wait to be placed on Medicare. My hubby is also covered under the benefits they offer. Based on our current income, we would never be able to afford monthly Cobra payments on top of our other bills. And it's my understanding that SSI is so back-logged that it could take up to 1-2 years before I receive approval for Medicare. SOOOOOoooo, that would mean that my hubby & I would have to sell our home (which is half of a double), pay off as much debt as we can and move into a smaller apartment. YIKES!!!!
I was in MAJOR STRESS mode and lost a complete night's sleep over this. I went back to my boss yesterday and asked him if he could do anything to persuade the owners of the company to bend the rules in my case since I was working part-time and still viewed as a valuable employee by my boss. He said he would do his best. That was before learning of my latest TM news. I alerted him about it this morning and he was very happy for me and will relay the information to HR.Now that I have hope that the Ixempra/Xeloda regimen may be working, I have some ammunition to bring to the benefits discussion with my employer to encourage them to extend my medical benefits. The hope is that if it is indeed working, then I would be able to return to full-time employment once the treatment is scaled back to a maintenance dose. My 4th treatment cycle is coming up next Thursday. Two weeks later on Aug. 28th, I am scheduled for CAT and bone scans which will tell us a lot more, hopefully reflecting the TM decline.
My husband and I have been in deep prayer about this whole thing and it was tough surrending the emotional upheaval back to God, but He has been so faithful to us in this entire journey and He seems to be doing something special here, at least for today. Thus I can go into the weekend with an array of hope and definitely on a much more positive note, thanks to my precious Lord and Savior Jesus Christ - who is my TRUE LIFELINE that I cling to every moment. He truly does deserve all the PRAISE!!!
Thanks again for listening and for all the encouragement and support.
Warm blessings to ALL!
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Praise God...may all your needs be met in abundance! I pray all your problems with your benefits are resolved quickly. I have yet ot go on my STD and have fears of this happing to me.
Flalady
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Lifeline - that is such great news.
I thought I would let you guys know that the acupuncture is actually working on my SE's. I just had my 4th infusion on this Tuesday. Wednesday I got a treatment in the am. That afternoon I was running errands and Thursday I was out and about all day. I didn't think it was really going to work but I swear it did. I was in bed the whole first week after infusion on the other go rounds. I had a hard time getting out of the bed even to go to the couch. And the 2nd week wasn't much better. My 3rd weeks picked up a good deal but I was still pretty easily worn out. This week has been way different and the only thing added has been the acupuncture. Yeah, it is expensive -$50/treatment. I have had 5 treatments. I will probably not do another treatment until right before or after my next infusion and then I will probably follow up with one more during that first week. It has really been a God-send for me though b/c I feel confident about facing my junior high drama kids in the next coming weeks. For anyone thinking about looking into it, I wholeheartedly recommend it. Be praying with me about another financial issue - my oldest daughter's college funding. I am trying to work on some monies through what the college calls "special circumstances". Yeah, it's the cancer card and single mom card both together. This is usually a powerful duo but college is mighty expensive and we may be stuck in a bunch of loans. I know God can provide it and we need it. My spirits have been way up since this new energy has been on me. I am suppossed to go back to MD Anderson on the 18th and 19th of this month. I plan on argueing with them about the Ixempra/Xeloda combo for the long haul. My onc at MD told me that I might be on this for life. Sounds a little harsh. She also added that "life" = 2-3 years on the average. I don't have time to die. I have a 13 year old girl that needs to be raised, so I have to make it at least double and actually I would like to get both girls married and be a granny someday. So this "average" is going to have to be modified. You ladies give me so much hope when I hear that you have had mets for 6 years and going strong or 10 years and counting. It is a bit fearful to hear from the MD Anderson giant that they have done all they know how to do. What?! They are suppossed to be #3 in the nation! So I am actively seeking alternative routes. If you know of a good alternative treatment center that's worth the checking out - hit me up on the PM. I also must remind you that I am a single mother/teacher and I live paycheck to paycheck. So money is a factor. I am currently looking for a rich single man that likes fat, bald one-boobed highly opinionated women with teenagers. I make myself laugh. Hey, he could be out there. I love you guys.
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Hey Kateva & FlaLady,
I appreciate your kind feedback. My hubby & I are in the same boat financially as you, Kateva, living paycheck to paycheck - like most of the country. I can't even look at adding another $50 to try accupuncture, especially when my SEs are not really too bad. But if they were, I guess I would be forced to consider it, though I would have no idea where the money would come from. God knows how much we can bear and gives us His grace every day so we can keep moving ahead. Even my onc told me on Thursday that I am a most unusual case. She told me that most patients that have experienced everything I've been through with treatment regimens and surgical procedures usually don't possess the strength to return to work even on a part-time basis. People at my church tell me I am such an inspiration to them, but I don't see myself that way at all...I just keep walking in a surrendered position before God, allowing myself to cry when I need to and fully embrace joyful times when they come.
As for the benefits scenario, I trust that God will resolve this with my employer. I know they see me as a loyal, dedicated employee and now with my counts in decline, hopefully backed by good results from the upcoming CAT & bone scans, this will sway them to bend the rules and allow me to keep my benefits.
Personally I think it is CRIMINAL to make cancer patients (warriors) under life-threatening circumstances worry about medical insurance and paying the bills when all we are trying to do is whatever it takes to fight this disease. And insurance companies should be MANDATED to cover folks like us at affordable rates, ESPECIALLY when employers choose to release us from their coverage plans. I won't ramble on about this anymore, but I know you gals know exactly where I'm coming from. It just really gets my dander up.
Anyway, Kateva, I am very glad that the accupuncture is helping your extreme fatigue. Hopefully, you will only have to utilize that option once in a great while to maintain your endurance so you can function.
That's all I have for now. Enjoy the rest of your weekend, gals! And please know my prayers are wilth you.
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Hi gals,
In regards to acupuncture being expensive:
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- My insurance actually covers the first $30/treatment up to 12 treatments a year. I know it doesn't sound much, but it's $360! And I have a sucky insurance, some of you may have a better coverage. Make sure you check. You'd probably have to submit claims yourself. Check also if they would cover acupuncture treatment IF it's prescribed by either your onc or your GP. It's really worth asking.
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Certain large centers (in my case UCLA) may have an "integrative" or "east-west medicine" department. Apparently the acupuncturists practicing at UCLA are MD's, thus my visit with them is treated as a doctor's appointment, therefore I only the insurance co-pay when I go there.
Hope this helps.
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Hi everyone,
I need advise! My mother has metastatic breast cancer. This is a 3rd time she is undergoing chemo in the past 11 years. She started the Ixempra with Avastin a few months ago. She is having her fourth treatment on Tuesday. 24hours later she gets the nuelasta. At the 3rd infusion, the doctor gave her oxycotin for pain and norco. She also has darvocet and darvon. All of a sudden the past two weeks, she has been unable to do anything. All she wants to do is sleep and she is in pain, At first I thought it was the chemo. Now I am wondering if it is too much pain killers and not any food.
This is getting crazy but I cant look at her like this. It is killing me. I don't know how to help her anymore. She refuses anti depressants and I think she needs them. At three weeks out though I dont think she should still have side effects from chemo. At three weeks out, your body I thought should be feeling better. She goes to the best doctors at UCLA. Dr Gillaspe and at Northwestern Dr. Newman.
Please help me and let me know what you think.
Stacie D.
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hi holden
so sorry about your mom. I have done 4 chemos now and with each one the side effects have gotten worse over time vs getting easier. What gets easier is knowing what is coming and how to manage them. Ixempra has been the hardest chemo for me by far. The fatigue gets worse for me the more chemo I have. I had a LOT of pain for my first several infusions of ixempra until I had my onc lower the dosage. Even with lower dosage I still take vicodin several times a week and it makes me tired along with the anti nausea meds. I am tired all the time too and I am only 41. I take naps daily and have to limit how much I do daily or I wear out easily. You might want to speak to her doc about lower dosage of ixempra. Hope this helps somewhat.
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Holdenbryc,,
One of the Ixempra ladies will be along that is also being treated with this drug. As you read it can be are hard drug for some. I think you are right about the anti-depressants...most of us use some form to help us...if nothing else to sleep. Is she afraid of getting hooked on them? Let her know that less than 2% of patients get hooked on the. You my say something to her doctor about her not eating. This is a very dangerous issue for at stage IV patient, and your right pain meds can make you just want to sleep way to much...she is using some strong ones and a lot of them. She may be using them as her anti-depressant...you sleep and escape. I'm sure she will not see a counselor...but this could be helpful.
One thing you do need to understand about chemo, is with each treatment it gets harder to balance back from, and depending on your Mom's age...each balance could be even harder. I'm sure she must be feeling like her battle will never end. This in it self came be exhausting and she may be feeling she is tired of the battle...again counseling could be helpful.
You need to find some way to reach her...a special person to visit, doing something she loves...just something to get her back into wanting to live and have a life in the middle of cancer again. Just must be a strong women to have been fighting this for so long.
Flalady
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Too young--
Have you had 4 different chemo regimens or 4 rounds with ixempra?
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About the cost of acupunture: In my city the Institute for Traditional Medicine has a clinic that they subsidize, limitied to people with cancer and a few other specific health conditions. There is a flat rate of $150 per month which will cover acupuncture up to 3 times a week, as well as supplements and some shiatsu. For those who can't afford $150 there is some financial assistance available. If you live in a midsized to larger city and want to try acupuncture, you might check around to see if there is anything similar.
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hi holden,
i have done 4 types of chemos including ixempra. I have had 5 infusions of ixempra so far and go for my 6th this week.
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