Ixempra-My experience
Comments
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Yea FlaLady! You Go! Heading to my next Ixempra treatment in one hour and I feel more upbeat after reading your post!!
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I'm so excited to read the good results so many of you are having with Ixempra. I'll be having TM's checked this week. I'm not finding this chemo too hard to tolerate. I had to drop the Xeloda as the SE's were more than I could handle. But did have Tumor Markers go down on the Xeloda/Ixempra combo. I'm hoping the Ixempra will do it alone and from what you are saying, it is working for a lot of you. Hope it does for me too. God bless you all!
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Group,
I apologize I started Ixempra September 2008. I have been receiving one kind of treatment or another since April 2007. I think the eye issues are since Sept 2008 then but my last exam was 12 mos ago so its definitely during one of the treatments.
For my hand/foot syndrome I continually massage myself. I use Mary Kay's Hydrating Lotion. Its thick without being greasy. I also lay in the tub under the hot shower spray, again a type of massage. There doesn't seem to be any thing for total relief just small things that make me feel a little better at the moment in time.
Congrats to Lifeline59 and FloridaLady.
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Hi Gals,
I just began Ixempra and I really appreciate all the great info that you all have written here. I just had my second infusion this week and so far, things are going better than after the first tx. Side effects seem to be pretty minimal so far this time, but alot still remains to be seen. I am encouraged by the good results that have been posted here, it's nice to have you all to talk to about this. I have my first scan on Monday since starting this tx, so we'll see where I stand.
Hugs,
Susan
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So glad to have found this thread and learn how Ixempra is going for others and what to expect. I just had my first treatment about 10 days ago. I am given injection once every three weeks. I did notice my neuropathy has been a bit worse with this drug than with the Abraxane I had been on. I take a product that has a lot of L-glutamine in it for the neuropathy and for my stomach. I probably couldn't do chemo without the L-glutamine. I also noticed I have been very tired, not right after but several days later and then for about a week. I am also having terrible troubles sleeping. I now take 20mg melatonin, 10mg of Ambien, plus another anti-anxiety drug (lorazepam). When I wake up in the middle of the night to go to the bathroom, I feel like I'm drunk as a skunk, swaying when I walk down the hall and about to fall over
. I can tell that the Ixempra is working, I can feel the tumors on my liver are settling down and shrinking. Maybe someone posted this before, but I just learned not supposed to drink grapefruit juice with Ixempra because it can cause problems. Oops, I had a few...WOO HOO to flalady and all the other ladies who are feeling better b/c of Ixempra. Crossing my fingers for everyone that they feel better soon.0 -
Ihavemetz2,
I read somewhere where they are treating "macular degeneration" with Avastin. You might want to check in on this. My doctor will mix Ixempra and Avastin.
Everyone else....How many of you are doing Xeloda with Ixempra? I really felt that it did not work for me until we added Xeloda. I did low dose but...I felt that's when I saw a big change. Just wondering if we all are on Xeloda or started and had to stop because of SE's, or never had this as part of their treatment plan.
Flalady
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Flalady,
I started the Ixempra regimen with Xeloda right away. My oncologist knew that the 2 chemo drugs work better together than separately. It's called a synergistic effect - a fancy term for improved effectiveness when 2 drugs are taken together. I guess they enhance each other. In my case, the Xeloda has been pretty toxic regarding the hand/foot syndrome. We've scaled the dosage back from the original 4000mgs/day down to 2500mgs/day - 2 weeks on one week off. Now, we're going to experiment with frequency - this time going 2 weeks on - 2 weeks off. But since it's been effective on knocking back the cancer, she is reluctant to take me off entirely. And I certainly don't blame her.
Though the hand/foot syndrome can be really annoying & irritating, I feel very fortunate that my SE's are not as severe as some of you fellow warriors have had to endure. Please know that my prayers are with you and praying that your SE's will minimize with time.
May each of you sense God's TLC in a very special, individual way.
Best to all!
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I am doing Ixempra by itself. Reason being I am on a clinical study trying to determine the frequency to give it. One a week for an hour or once every 3 weeks for 3 hours. I am on the every week group. I've had 3 treatments and off this week and then 3 more and then a PET Scan. Keeping fingers crossed. Side effects have been better than the Taxol.. Or should I say different. Nausea and bowels are my biggest issue. Darn liver! lol But overall, the side effects have been more tolerable. I'm so glad to keep hearing everyone update on how they are doing on this one. Keep it up. Deb
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I am on Ixempra/Xeloda every three weeks. My first treatment was 2 weeks ago, have had 1 treatment, no hand/foot issues yet. I was achy the first few days kinda like an RLS type syptom. The last few days my scalp has been tender...hairloss next??? This is what it felt like last time with the A/C when I did lose my hair. Whatever. No real bowl problems or neuropothy. My ONC would have preferred Avastin/Ixempra for me but, I am having issues with pleural effusion from lung biopsies several weeks ago. I'm told that the plearal effusion will take of itself with the chemo. I wish that was a quick fix...PE is a crappy thing to have.
I have METS in my thymus, hilar lymph, internal mammary lymph and nodes on the lower portions of both lungs. Stage IV...got a second opinion at Mayo, they told me that I would be on chemo pretty much for the rest of my life. I refuse to believe that! That statement is hopeless, I think!
I hate the way this is affecting my family. My 6 1/2 year old daughter say's that when I get my port out I will be all better. My 3 1/2 year old son say's "the chemo is gonna fix your boobie, Mommy." I had a single mastectomy on the left side, so my son referrs to that as a "shark bite". That's actually kinda funny. Anyway.
I will give an update about the hairloss issue...
Keep fighting the good fight Ladies!
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Hi Heather,
I am on the same schedule as you, and have now had two treatments, with my third coming up next week. My hair did fall out when my scalp got tender. It was about the third day of tenderness when it finally let go. Sorry you have to do this again, also.
The good news is, the Ixempra is working for me. I just had my first scan since starting and I've had a good response. Not as dramatic as I had hoped, but the sizes of my liver lesions are smaller and my liver panel numbers are also improving. So while I'm having about the same side effects as you, I think it's worth it... so far. I've had alot of bone pain, but it responds well to hydrocodone so at least there's a "fix".
By the way, welcome to the boards! The mets board in particular is really great and as a Stage IV gal myself, I can tell you firsthand that these ladies are a great support group. Please post wherever you feel compelled! Jump in, we welcome new gals all the time.
And yes, we can always hope for remission or even being cured! Many of us have kids and are planning to be here for them a long, long time. Hope is a great thing, and you'll find alot of it here.
Susan
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Oh yeah! The hair is falling out...day 3, your right. It's fine though, I still have all of the goods from last time. I wonder also, about eyesight. If anyone has had any vision problems. Problems focusing on reading near/far away. Just wondering, I asked my ONC. He said it was probably from runny eyes and eyelash stuff. MAYBE!
I got a puppy for my kids today, distraction away from me and my medical issues. Does anyone have young dealing that are coping also. Not sure if that was the best decision, we'll see. Wish me luck. She sure is a cutie!
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Hi Ladies. I was looking for some info on Ixempra/Xeloda and someone pointed me towards this thread. I'm so glad I found it. The information I have read and knowledge I have gained is invaluable.
I had Stage III IBC in 2002 with a lumpectomy and radiation. In late November of 2008 II found a new lump just under the original site in the original breast. Scans showed it was strictly in the one breast and they have tagged me Stage II this time, but understand that since it has come back and I am Triple Negative, that this signals that the original chemo regimen did not work.
Had a double mastectomy on Dec. 15 with expanders, and then a systemic Staph infection with emergency surgery on January 9th which set me significantly behind on beginning chemo.
Since I had FEC the first time, and am Triple NEgative, the only chemo left for me was Taxotere. I had my first treatment with that on February 13th, and within 30 seconds of starting the drip I stopped breathing. Bottom line I am severly allergic and there was nothing left for me other than drugs that my insurance company says are for Stage IV only.
My doctors (one local and one at MD Anderson) feel that the Xeloda/Ixempra combination is the best thing I could possibly take, and insurance finally approved it for me. I begin on March 2.
The nurse at the doctor's office went through the possible side effects of both, and made it sound like a walk in the park. I'm glad I was able to read this, so I am prepared for what might happen, and armed with remedies. More importantly, I own a business, and will make sure there is enough coverage so that if I cannot work much or at all, I don't have to worry about that part of my life falling apart.
I will continue reading your pearls of wisdom, and report in after my first treatment with my experiences. I will say that between the staph infection and the extreme Taxotere reaction, I am ready for something to go right.
Fran
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Hey Susan... Good to hear the liver is better! And the number are better!!! Yoohoo! That's what I am hoping to hear in a few weeks. Good to hear the positive news with the Ixempra
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Fran - didn't they consider using Abraxane instead of Taxotere or Taxol? It doesn't cause the allergic reaction since it's formulated differently. I would think they'd use that first before going to Ixempra/Xeloda.
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Thats a good question about Abraxane. According to my doctors, because I showed such asn extremem and immediate reaction, within 30 seconds and having stopped breathing, they claim it rules out all members of the Taxol family. I didn't even think about questioning it. Should I?
Fran
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Abraxane is in the Taxol family also...
Flalady
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HI I am starting Xeloda 2 weeks on 1 week off (2000mg daily) and Ixempra (75) every three weeks. How does that compare to y'alls treatments? First off I have read every post on this thread and I am officially scared wittless regarding SE. Someone asked if anyone else had young children and yes I have a 5 1/2 boy and an almost 10 year old boy. This is hard on them. just keep saying we are doing everything we can. My sons 4th grade class made cards for me today and one was in cursive. If you can imagine a 4th graders cursive : "hope you Hell Better" I'll translate that into: Hope you feel the hell better!
I have mets to the liver and on Friday 2/20 I had RFA to two of the three tumors. They could not remove one tumor due to location. I am still in a lot of pain due to that and have nerve pain in my neck do to the lapro. So I have been sleeping in a recliner if you call it sleeping. I am 38 and was thinking of getting a part time job to help with medical expenses but I will have to see how I handle these SE. I have had A/C before and Taxol with Avastin and Avastin only. Some hormonals that didn't work.
I like hearing things like tumor markers going down and tumors shrinking. Please tell of success along withhow to cope with SE.
I have my arsenal of Bag Balm, Baking soda/salt mouthwash, L-Glutamine Powder and my stash of Oxycodine.
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Oh my gosh... I am still laughing Pattih.... The innocence of a child... The card is priceless! I hope we all feel the hell better!
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Abraxane was developed to avoid the severe allergic reactions. It's not so much the taxanes that cause the reaction, but the solvents they mix it with. I believe it's cremophor. However, the Abraxane is a lot more expensive, so that might be tying into the decision not to try it. There are women on this board that had bad reactions to Taxol/Taxotere, but were able to use Abraxane, but they had to fight to get it because of the expense.
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I see where a lot of you are losing your hair. I still haven't after four months. I wondering what your dose level is? Mine was 100 for three weeks (whatever the measurement they use).
I see a few with eye issue like mine. It's really weird how it comes and go.
My issue is still neuropathy that I had before starting. So hope I get to take a break soon, but..my skin does look a little red
Flalady
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Hi Ladies-
I just had my third tx of Ixempra and so far am doing well. My liver numbers continue to come down, with two now in the normal range! Yahoo!! I'll have another MRI when done with tx #4. I am hoping for further decrease in sizes of lesions. My SE's are pretty minimal, I mainly deal with bone pain and fatigue. All in all, not too bad.
I might look into RFA for my main 3 liver lesions, at some point. I don't know whether I'm a good candidate but will be asking my Onc. PattiH, I'm glad to hear you were able to have it. I am only on Ixempra, but I also have 75 every 3 weeks.
Hugs to all,
Susan
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Having my first treatment of Ixempra/Xeloda tomorrow at 8am. So appreciative of all the advice on this board. I feel much better prepared than had I not found you.
I am a little nervous about feeling awful for the next 18 weeks, but also have my little kit of remedies ready and waiting.
Thanks again!
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Fib, here's hoping that it's not all that bad. I know that the Xeloda can be challenging, but it sounds like you're prepared!
As for the Ixempra, my main SE's have been funny taste in mouth, fatigue (just wanting to sleep), some bone pain. But all in all, very manageable. I hope your experience is a good one, with fabulous results.
Will be thinking of you tomorrow am. Go get 'em, and hang in there!
Susan
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I had my last Ixempra on Thursday, that was #2 for me. Fatigue, hairloss, and some RLS like syptoms. I'm looking forward to #3 so I can get a Petscan to see how I'm doing! FINGERS CROSSED!
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Well so much for Ixempra.
I was originally supposed to take Cytoxan and Taxotere. Had a huge bad reaction to the Taxotere, so they changed me to the Ixempra/Xeloda because they felt it was best for me. I am still only Stage 2, but had run out of not yet stage options.
Anyway, I started Cytoxan by mouth this morning, and went to dr. for my Ixempra infusion. As soon as it started I felt this awful pain in my back, just like with the Taxotere. About 30 seconds later I felt a little heaviness on my chest. Then I realized I couldn't breath properly, gasping for air and the pain in my chest I was sure was a heart attack. I got ice cold and boiling hot at the same time, and all I really remember next is a flurry of doctors and nurses and equipment.
Bottom line, I'm now allergic to Ixempra as well, so that is off the radar. Why couldn't I just be allergic to cancer?
Anyway, I will continue on Xeloda alone and cross my fingers. Good luck to all of you and I hope the Ixempra is gobbling up cancer cells like crazy around here@
Thanks@
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While Taxotere nor Ixempra were options for you, I'm sure that there is something out there that will be. Do not give up, keep trying.
Well, I failed to mention in my last entry as far as SE go. The GI upset is very uncomfortable, mostly in a.m. The compozine seemed to work...the belly was on FIRE! AGH!
Hand/feet are okay with skin, although my legs and left arm have been pretty achy the last couple of days. Hotbathes and painmeds!
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Girls, I hope the positive words on this Ixempra runs for me. I feel awful!! Friday will be my 5th treatment and won't know until April if it is working. I missed teaching the last 2 days. It was just too much for me. I crawled in today and can't wait to go home. We have to pay our bills you know! Please keep me in your prayers. I'm alittle scared right now.
Debbie
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Hello all,
Sydpen2 I too find I have symptoms that make it impossible for me to report to work. Luckily I have a position that was easily converted to telecommuting with a few changes. The fatigue, the hand/foot syndrome, the RLS, the pain, the eyes - its all there, so much I feel I don't begin to list them all. I hope you feel better real soon.
To all, is there a place on Ixempra's site or somewhere else we should be posting our symptom's especially the eye issues? I went to my eye dr. and he diagnosed the early stages of macular degeneration. Its not yet a listed side effect that I am aware of.
Lastly I need your expertise. I went for another PET scan yesterday and now there is a spot on my liver. What is the term SUV calculation 4.74? What are the statements: Diffuse hypermetabolic FDG activity is noted throughout the axial and appendicular skeleton in the response to the GCSF chemotherapry. Clinical Correlation is suggested for metastatic disease cannot be excluded.
I really appreciate all of you.
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You report drug side effects to the FDA site. I've never done it... but I have been reading a lot on them and they are suppose to be tracking this info. I still have not had a eye exam. I was hoping to get off Ixempra before going. I'm on my last month. I having trouble seeing to just write this.
Flalady
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Hi Gals,
I am so sorry some of you are experiencing tougher SE's on this regimen. I just had treatment #13 on Thursday - feeling a bit icky today. Good news, though. My TMs are down now below 200... 196 to be exact. I also just returned to taking Xeloda after about a month off. We needed to let my hands recover for a while. So now we decided to put me on a one week on - one week off schedule with the Xeloda - 3 pills in the morning & 2 at night. My oncologist suggested on my last visit with her back on 2/26 to try using Aveeno bath oil at night on my hands and wear cotton gloves to retain the moisture. It seems to be helping. And I also continue to use my hemp lotion during the day. They're not back to normal yet, but they are better than they were.
Please know my prayers are with you all as you keep persevering.
BIG HUGS!!!
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