Ixempra-My experience
Comments
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Lifeline- Try Bath and Body Works- Shea Butter lotion for your hands and feet. It comes in a blue tube. It worked wonders for me. I also know that you have to change lotions often to stay ahead of the dryness.
Carole- Reading your post with awe and wondering how you keep up your cheeriness. I admire you and only wish you good results!
I just had #9 Ixempra last Thursday. And I get Zometa every other tx time.
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bump
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Does anyone get headaches with Ixempra? I find I have them at least four or five days a week. (I get it weekly.)
Flalady
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I started on lxempra/xeloda combo almost 3 weeks ago, actually ive been on xeloda for about 3 and a half months but the spots on the chest wasnt disappearing so the onc started me on the lxempra a couple weeks ago.. I had MAJOR bone pain for almost a week, they gave me hydracodone and it made me puke all night so I just stuck with tylenol, the pain finally subsided on day 5 and the nausea kicked in, ugh, ive still been nauseated but not as bad as the TAC chemo the first time.. I have two more rounds of this and hopefully itll all be gone and I can get on with my life!
floridalady, I do get headaches with this lxempra, almost every day..
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What dose of Ixempra are you ladies getting? I'm getting mine three weeks on and one off at 100...whatever their measurement they are using.
Flalady
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could the headaches be from the premeds- decadrone?
I had my dosage lowered and the side effects lessened. Please talk with your onc about the headaches.
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I've never had headaches from premeds So I don't think it is from one of these. But these headaches are consuming my live right now. They do seem to be a little better. We also added Xeloda last week to my chemo mix. I also decided to try low dose nicotine patch to help control neuropathy. This is just starting in trials and my doctor said it was OK to try. I'll let everyone know how it goes.
Flalady
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A nicotine patch for neuropathy? That sounds interesting enough to investigate....Tell me more please!
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I'm going to be in a clinical trial of ixempra vs. taxotere.
I'm going to try to work some during this, and was wondering what the "fatigue schedule" was like. When I was on AC 10 years ago, I was always the worst tired 3 days after the chemo. Does it work that with these drugs too?
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Once the pre meds wear off, the fatigue comes in. I found the hardest days start on day 4 and last a few days. It depemnds what you do for a living as to if you can work through tx. I was student teaching and took off one or two days each tx. (every 3 weeks). So yes, it is doable!
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Ok I hope I don't speak to soon but....I can see a response. My solid skin tumors are almost gone and my skin does look better after only two months on lose dose. Bad news....neuropathy is kicking in a little faster. The good-The Bad-The ugly. Or should I say one step forward and one back?
I did get Ixempra three weeks on and on off. I working only three days a week. I really need that afternoon nap. I've worked through the other eight chemo's I've taken. This one is tough.
Flalady
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I don't recall getting Ixempra headaches... it's funny how everything is such a blur from one drug to the next. I had headaches after my first few TAC txs & asked about that... was told that headaches weren't a SE. Then I was reading about Aloxi & it said headaches are a SE ~ so I think that explained that! Fortunately they went away... I've only had Aloxi 25 or 30 times now... I have lost count how many txs I've had. Isn't that funny, you'd think we'd all know that one.
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FlaLady ~ woohoo on the response!!!!!!!!! That's so awesome ~ I'm still disappointed that Ixempra/Xeloda did absolutely nothing for me ~ I was really hoping it was the wonder drug combo for me. I am THRILLED that it is working for so many other ladies though ~ that's awesome!!!
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I was hoping it would be the wonder drug, too!
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Thank you so much for all of your posts, I am a week out of my third Ixempra I received last Tuesday and am questioning weather I can do it again. The pain is unbelievable and unfortunately I have not been able to keep anything down since Wednesday. I went in for IV fluids Monday which seemed to help the pain a bit but not much. Today is the first day I feel even remotely human. I was not sure if the pain was from neuprogen or Ixempra and I am satisfied after hearing from all of you that it is Ixempra. I am also renewing my faith in it by hearing your tumors are shrinking or stable. I have many questions for my oncologist on my next visit thanks for all the input. I am taking darvocet for the pain but it sounds like the vicodan may be more helpful do you find you can take this on an empty stomach? Please keep up the discussion. I will continue to post my feedback and progress and let you know what new tips I find work for me.
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tlbhartley,
Are you taking low dose? Three weeks on and one off. If not push for your doctor to let you have this protocol. My doctor said research shows that Ixempra should be use on this schedule. This has been a lot easier on the side effects. No blood shots yet. I've been on chemo for eight months in 08 with no blood shots. ( carbo/gemzar & avastin and then Ixempra). I have not lost all my hair...only about 25%. So far it looks like I've had a complete response with only three months of tx. I have a PET scan in two weeks. I had extensive skin mets....ALL GONE NOW.
Flalady
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flordia lady good to see ixempra isworking for you it has done nothing for me ive had 3 tx and my cancer has spread ike wwildfire i dont know whats next for me deb from ky
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Floridalady - glad to hear the Ixempra is working so well for you! A women at my tx center is HER2+ and has been doing this now for 8 years! This last round they used Ixempra when her skin mets popped up, and it really worked well for her. Sounds like it's really effective for them! From what I understand, skin mets aren't always very responsive to chemo.
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slonedeb,
Your next chemo could be Navelbine. A couple of ladies who did not respond to Ixempra did well with this chemo. This chemo is a older lung chemo but I've heard some positive things. I hope you find the right one soon.
mthomp,
Your right about skin mets. The worst part is they will keep coming back.....;
Flalady
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yeah those damn skin mets. I went on ixempra to get rid of them. They went away, but literally 2 weeks after I stopped ixempra, they came back with a fury. Now doing herceptin again and it seems to be helping.
hope the rest of you are doin well on ixempra...hellish chemo that it is
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Thank you for the suggestion, I am seeing my oncologist on Tuesday so I will definately address it. I have taken avastin, taxotere, abraxane, xeloda, gemzar, navelbine and I think everyother chemo there is and this one is a whopper. I guess I wish I knew if this one was doing anything but in a way not sure what my next option would be. What premeds are you receiving with the ixempra? I am not getting anything for nausea and think maybe I should be, needless to say my list of questions keeps growing. We just keep trying to make the best decisions we can and power through....thanks for all the great info.
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so far Ixempra has been working for me. (bone & liver mets) After my first two treatments my tumor markers went from the 3000s to the 700s. Scans showed shrinkage in liver and healing in spine. I get another tm test this week and hope it has continued!!
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Hi Girls!
Yes - it has been WAY TOO LONG!!! Just checking in to let you know that I didn't fade away into oblivion.
Hope you all enjoyed a wonderful holiday season with family & loved ones.Latest update - about 10 days ago, I did treatment #11 of the Ixempra (the every 3 week dose). My last TM reading went down to 279 from previously over 1500. This coming Thursday I get the latest CA27.29 reading. My Xeloda dosage is down to 2500mgs which seems to be more tolerable. I'm using Hemp lotion to alleviate the dryness on my hands and feet. It seems to be doing the trick for now. Still using the baking soda/salt/warm water solution as a daily rinse and my mouth remains free of sores. I keep my head shaved as any growth I see is spotty and inconsistent. I'm fine with my hats & wigs. Nice to have some variety!
I also turn the BIG 5-0 this Thursday as well. It's been a hard fought decade and it is only by the grace of God that I am still here to tell the story - so much to be thankful for! I am also working a part-time job in the office at our local ice rink. It gets me out of the house & I'm having fun. It also supplements long term disability & social security and we're managing to pay our bills, including COBRA. However, I am still casually searching for a part-time position with health benefits, but in this current economy, I'm not expecting to land one soon. In the meantime, life is doable.
That's all I have for now. Keep persevering, ladies! And keep the faith! Sending each of you a BIG BEAR HUG!
OH - and an early Happy Valentine's Day!0 -
Is anyone having issues their eye sight that is on Ixempra? Mine seem to come and go. I have times that I feel I can not focus? Mostly in the distance.
Flalady
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Wow, I'm glad I found this thread. I just read through all 9 pages.
I will be taking my 3rd treatment of Ixempra Friday. I am on a clinical study trying to determine how often to give it. I am on the every week group. Once a week for one hour. Once a week for 3 weeks and then off a week and then 3 weeks again and off a week. Then a PET scan. I have liver and bone mets. Focussing on the liver. Taxol stopped working so we are doing this clinical study.
First treatment was tough. Very restless and couldn't sleep. Nauseated alot!! Fluish feeling. However the second round was much better and hopefully will continue to be. The aches in my legs and hips have improved. The neuopathy in my toes and finders have stayed the same.
Hopefully with lower doses each week the side effects will be less and hair loss not as bad. We will see. The worst part is the stomach...ribs and bowels..... For pain, I take Vicodin when I give in. Oxycodone constipated me beyond words. And yes my eyes seem to blurrier at times.
I'm glad to hear the positive results from some of you. I have so far been able to push myself to be a school where I teach. It was harder when I was on Taxol.. That's a tough chemo. I hope this Ixempra proves to do it's job.
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I am so happy that this chemo seems to be helping alot of ladies here!
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Hello, I have been watching your comments and decided this evening to join you. I have been experiencing Ixempra since September 2007, its the 5th chemo in the last 2 years. They tell me its working as my TM's are maintained, they are not increasing nor are they decreasing. I did have some pre-med SE's and we terminated them one by one until we found which was causing the issues. The SE was immed/during the treatment and found it to be Benedryl. I have body aches every day, headaches more than not, neuropathy in my hands, lower arms, feet and lower legs, and various surprize occasions of vomitting. Fatigue, well I find I can sleep A LOT. I exhaust easily.
I recently learned I have macular degeneration but no one will say its from the meds - although that was the optometrist's first question. I personnally feel my eyes started changing since this past Sept, but its definitely in the last 12 mos.
Its all about having support, here as well as close and personal. Hang in there gang.
Ihavemetz2
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It's really amazing how widely varied the SE's are with this regimen. Thanks, Ihavemetz2, for sharing your experience. If you truly started Ixempra in September of 07, then that means you would have started it just prior to it receiving FDA approval - which was granted in October 07. Hmmmm.....interesting....
Just received my latest TM reading - down to 237.4. YAY! But I am now experiencing more hand/foot syndrome, even with having lowered the Xeloda dosage down to 2500mgs per day. I had an appt with my oncologist today and she is now going to alter the schedule - 2 weeks on & 2 weeks off. So hopefully that schedule will help to alleviate it and keep it minimized. Time will tell.
I have had no major eyesight issues on the Ixempra/Xeloda regimen and I'll be doing my 12th cycle next Thursday. Anyone else experiencing intermittent hand/foot syndrome, especially when you thought you found a way to alleviate it, and then it sneaks back in & rears its ugly head again?
Keep up the good fight and may God richly bless you!
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I got my Pet results yesterday. I ONLY have one small place under my scar on the right side. This is from open wounds and total coverage of my chest wall and cancer under my back muscles, small nodes near liver and lung. Yes! God has been so good to me. I will do one more round of chemo. (three weeks for me because I'm doing low dose) My Tumor markers is 52 and we want it below 40.
This low dose stuff is great. I this will be my fifth month and I still have my hair and I actual feel better now that I did to months ago. ( I went back to my diet and supplements that helped me with fatigue.)
I hope you all are bless with this chemo. I just hope it holds me for a while. I will be stopping soon do to neuropathy that I got from previous chemos. (This is number 9 for me.) I will go back on Ixempra in a few months.
Flalady
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FlaLady that is AWESOME!!!!!!!!!!!! Soooooooo incredibly happy for you, woohoo!
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