Ixempra-My experience
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Too Young
Thank you so much for replying to me so quickly. Your posts have helped my father and I with understanding what to expect. It is so hard for us to understand what she is feeling. At least you have helped us to know, she is not the only one undergoing these treatments. Doctors save our lives yet they never can relate to what we feel or experience. I often think of the Drs as Dr Do goods and not Dr feel goods. One of my moms Drs said there were very few side effects to the Ixempra and he claimed none of his pts experienced them. The other DR. said of course there are side effects and take advantage of the drugs.
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Hey holdenbryc -
Ixempra has been my worst chemo experience. I am on the Xeloda/Ixempra train and it is nothing but tough. If you read back I have been doing acupuncture and that has helped with the fatigue but I think we all will agree that the fatigue on this one is way crazy. Going to bed is about the only thing you want to do. I agree with Flalady you have to find something that she wants to get up for or has to get up for. I see a counselor and think everyone should but maybe her just getting on here and reading stuff might help too. My prayers and thoughts are with you. I'm sure she is so proud of you and your being there for her is so important. I have 2 daughters that help me so much.
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okay... I have been away for a few days and so much has happened!! YIKES!!!
I am going to go back to lifeline- fantastic news about your TM numbers! Keep the good news coming!!!
About insurance- where do you live? I don't think a company can let you go and offer you COBRA while on STD. It is against the Amer. Dis. Act. There is another thread here on Reccur. and Mets that is dedicated to STD/LTD questions. You should read through it!
You must be collecting SSDI for 2 years before you qualify for Medicare. It has nothing to do with being backed up... It's there policy. But as long as you are Stage 4 you automatically and very quickly qualify for Social Security Disability. While collecting, you can earn up to, I think, $800 or $900 a month on top of collecting. By the way, if you have children that are still dependants, you received a check for them as well.
Kateva... Why not wait to hear what MDA has to say about Ixempra/Xeloda for the long haul? MDA is very aggressive with their treatment suggestions. I go to the one here in Orlando, Fl. and they wanted me to go on a clinicial trial. I said no and I am happy wiyth that decision. i have a 13 yr. old son, 19 yr. daughter and a 22 yr. old daughter that need me too! Can't waste time with the unknown. I want to know I will be around for a long while! Don't listen to averages.... because they are just that! Averages. You are not average therefore you don't fall into the category. You will be here for those very opinated children of yours!
If I listened to the "averages" I was given, I should be getting ready to died real soon.... but instead I am clothes shopping for the new school year and worried about shoes hurting and if the microwave still is in the same bldg.!
Once school settles in, I will look into acupuncture. Did it hurt? Maybe and this is a big maybe....I might look into a nutritutionist someone recommended to me.
One negative for today.....I have started to lose the feelings in my fingers and can't button my shirts anymore! Oh no, someone might like the view! Has anyone else felt that? should I call the doctor tomorrow about it?
holden- I have just finished my 4th treatment of Ixempra too. They lowered my dosage and it has been much more bearable. I try not to count how many chemos I have been on since I started the journey in Feb. 2005. but let's see.....6 different types of chemos, avastin, zometa, and 2 different types of hormonals. But who's counting......I am still here! Maybe mom needs to change pain meds. I had to try a couple til I found the best one to function properly on. And I take my pain meds everyday!
Flalady is right, your mom has to eat and drink especially on Ixempra. Dehydration landed me in the hospital a couple of weeks back. It comes so quickly you don't even know it's happening.
Okay...I have said enough for tonight!
May each of you have a good week and we all try to stay cool!
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Well ladies, today I joined you on Ixempra. Was told two months ago that this might be what we try next. Have been reviewing your posts during that time. Thanks for the "heads UP" of what to expect. I had Zometa today then pre-meds of Aloxi, Benedryl, at least one other, then the Ixempra, and then Herceptin. Will have the next treatment in 3 weeks and will probably add Tykerb at that time.
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just had my 6th infusion of ixempra and second of zometa. Last time was way easier for me and today i also feel great. I was tired and a bit sore yesterday but I think it was from sitting in that chemo chair for almost 5 hours. I do continue to have more fatigue. Took 2 naps yesterday. But pain is way better and nausea is too. Doc said he thinks I am just getting more used to it. Says I should only have to do 2 more if things keep going well. Chemo free by Oct...cross ur fingers!
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Hey Lori,
Sounds like you have neuropathy on your fingers. I don't have neuropathy on my fingers because of Ixempra, but I had that when I was on Taxotere. Simple tasks that people take for granted like pulling out an ATM card back out of the ATM machine was impossible. It went away after I got off Taxotere.
Another option if you're going to be on Ixempra for a long time and the neuropathy gets worse: I think they may just lower your dose.
Well I'm done with Ixempra myself (had a total of 6 cycles), moving on to another treatment, still TBD.
Not only I need a break from Ixempra, but I supposedly had a progression on last scan (radiologist messed up the report, so we didn't know yet how much progression - I'm hoping for "small" progression).
Hope everyone is doing fairly good.
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I have been following your thread even though I am not ready for any chemo yet. I heard alot of positive things about peoples response to this drug but from all of your posts here this drug seems extremely toxic. I guess I am surprised because it seems this has alot more s/e than most of the chemos and wondered if it seems worth it in the long run.
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I am being switched off Ixempra too! I had 5 infusions. Too toxic for my body.... I have been told once my blood counts come up (they are very low) I will be starting Abraxane with my Zometa.
Does any one have experience with that one???.
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Wife had first round of Ixempra four days ago, she is convinced the chemo nurse knock her out, then beat every inch of her body with ball ping hammer, trying to squish all tumor cells. She is convinced that is the only way she could hurt this much.
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Hi LuAnn and everyone else who's concerned about future Ixempra treatment due to side effects,
I agree there seemed to be pronounced side effects, but if you know going in what to expect, at the very first sign of pain, take pain meds, at the very sign of insomnia, take sleeping pills, etc. And for sure ask for a reduced dose next time. This may still be an effective drug to knock down your disease. Some of you may already have permanent neuropathy or some other problem, but I'm sure both you & onc will weigh benefit vs qualify of life.
ibcspouse, does wife get pain meds from doc yet? Make sure doc knows. Based on posts here, it seems like side effects could get worse with every cycle, unless the dose is adjusted.
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I had my 1st Ixempra tx 4 wks ago & wow did I have serious pain for quite a few days! Last wk had #2, though, and it was a walk in the park compared to the first time; this time I only had pain for 2 days & it was far less severe than the first tx, so I'm hoping this is the trend for me.
Vicki
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Pinehouse,
She has pain mets. darvon or 5mg oxicodone...The problem comes with the balancing act. Her MUGA was 27%, and blood pressure running 93 over 68, taking 2 diaritics and beta blocker. not to mentions 6 tabs of Xeloda She has to keep pain med balanced with BP.
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Hi,
You mentioned that you had less pain with different premeds. Which premeds did you take?
We have tried Dexamethasone, Benadryl, and Zantac. The Dexamethasone helped but only briefly and the pain returned.
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Re: different pain meds
It'll be interesting to see what has worked for everyone.
I'm taking Neurontin, this is supposedly for nerve pain. Onc prescribed 900mg/day, but currently taking 300mg/day. I'm subsidizing it with Tylenol (over the counter) and Salonpas (heat patches w/ menthol).
My Ixempra #1 and #2 were a breeze (didn't even know I was on chemo), #3 had a few 15-second pains, #4 had quite some pain 7-10 days starting day 5, #5 had similar pain and started developing insomnia, #6 I was homebound a lot due to weird reactions (plus pain was so so - Neurontin, insomnia was solved - Ambien).
The nurse practitioner did mention Vicodin for pain, which I tried, but got nauseated from it all day. Didn't like it. I suppose it kind of helped w/ pain when I was on it, but I only took it that one day, so can't really for sure.
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PineHouse, there are lots of other drugs to try for pain if vicoden didn't work for you. Tramadol is a non narcotic pain reliever that might help if narcotics make you ill.
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Thanks for info, LuAnn. Definitely helpful for me. I know I have been ignorant about options for pain.
Hope your pump is working well (I assume you still use it) and you're recovering ok from the procedure.
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my pain pump is internal so I will use it for as long as I have breast cancer. How is that for spinning things LOL
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Hi Pine, I started taking pain meds when I was on Ixempra. I take 20 mg of Oxycotin, every twelve hours and then I have Oxycondone 5 mg for breakthrough pain if I need it.
Good Luck,
Kasey
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How often are most of you getting treatment? I just spoke to my onc. today about so many of you having problems with this drug. He said they have been told to change the protocol to days 1-8-15 and a much lower dose. Any of you doing this protocol. I think he is trying to convince me in taking this down the road.
Flalady
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I am still on a schedule of every 3 weeks. Surprisingly the last 2 treatments have been WAY easier for me. I swear adding the zometa has to have something to do with it because the difference is exponential even after they lowered my dosage. My doc said he thinks i just got used to it but i dont think so.
hope it gets better for u guys too
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I have fabulous news!!!!!!!!
My tumor markers have come all the way down since I startesd ixempra!!!!!!!
I am so, so very happy!!!!
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LoriFl - doing a little happy dance for you.
Flalady
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yeah lori...mine too!!
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Lori and tooyoung that is AWESOME news! I read your posts and see how hard this drug is. It's nice to see it is having a positive effect which hopefully makes it easier to swallow.
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Yeah, let Ixempra continue zapping your cancer cells, tooyoung. And for you, Lori, let Abraxane finish off everything too.
Flalady, I had 6 tri-weekly cycles. I think most if not all of us got tri-weekly, and my guess is that it's too new in the market oncologists have not started experimenting with different frequency/dosage. But it makes sense to me that doing it dose dense (e.g. weekly) may be more tolerable, given the fact that they are dose-densing everything now AC, Taxol, Xeloda, etc.
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LuAnn, probably not too relevant to the Ixempra subject, but thank God for your internal relief.
ps. this probably shows how behind I am...do they refill pain meds into your pump (does it have reservoir or something)? I read your post re the surgery to implant it & difficulties following surgery, I'm glad that part of it is under control.
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the pump has a reservoir for the liquid meds. It sort of looks like a skinny hockey puck. In the center of the pump it has an access point like our ports, a needle is inserted into this to refill the meds. The pump is computerized and they put a hand held computer device near the pump, it tells them how much meds are left, how fast they drip and when the meds will run out. Anytime I need a dosage change they just use the handheld to reprogram the pump and we continue on. They can change the meds if what I am on stops working and they can add different drugs to make a cocktail of sorts to minimize any discomfort and pain I have. I wish someone would have directed me to this pump alot sooner!
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Hey kids - I just got back from MD Anderson. It seemed like a wasted trip. They were very negative and I am going to Cancer Treatment Centers of America for a second opinion. I just had my 4th dose of Ixempra but my tumor markers went up. I will be going to Illinois September 1-5. There is a doctor there that has had some success in putting Stage 4 with mets in remission. They are paying for me and my mom to come down and I will be tested by their folks and they will tell me what they think. Be praying. I have to beat this - no question to that! The Ixempra has been a hard haul but I am glad that some of you are having success. Go 4's!! I will keep you posted.
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Abraxane was called off as the Ixempra is doing it's job! So off I go for another treatement this week!
Kateva- I am so sorry that you had such a negative time at MDA.You deserve better than that!!
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Not myself, but one of the regulars at my treatment center is on Ixempra for her skin mets. She's been at this 8 years - she's one tough old gal! She's HER2 +. She's getting great results from it, and she can see it because of it being skin mets. They did have to reduce her dosage, and it's a lot easier for her since they did that. Sounds like a lot of people are getting good results from it.
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