Ixempra
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May God give Joy (Jaylea) peace at this time. And thank you Cormac for posting. God be with you.
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Cormac, thank you for letting us know - I’ve been seeking the threads for posts to see how she has been doing. I’m sorry these treatments have not worked for her. 😢 Big hugs to both of you and hoping peace is her friend.
Libb
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Cormac, thank you for your note about your dear Joy, whom we know as Jaylea. Please give her my love and tell her she made a difference in my life during a difficult time. We had a really special little support group on the Halaven thread last year around December; Wanderingneedle, GG27, Kayla, pajim were there too. This cancer stuff is just so wrong. Sending you both wishes for strength and peace.
ShetlandPony
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Cormac, thank you for letting us know about Joy. I hope she finds peace. Sending hugs to both of you
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Jaylea I hope you are comfortable. Cormac thanks for letting us know about our sister.
Tany
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deeply sorry to hear this. Always the shoulder, always in good support of her sisters. I hope Cormac , you find peace in your heart. God bless you and Your family.
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Cormac, Thanks for letting us know about Joy. I always liked reading her posts. Even in difficult times she seemed ready to deal with things. I feel happy that I knew her even a little bit. Wishing you both peace
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Hello!
I am starting Ixempra this week.
Any advice, experiences and/info is greatly appreciated!
Lee
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Although I’m on a three month break from chemo right now, my MO mentioned Ixempra for my next TX.
After reading here, I’m not sure I want to take this drug. The SEs sound horrible and would keep me from doing what is important to me.
Sure wish there was something else. (I’ve taken ALL the rest and it’s too much for me to put on my profile)
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Although no one has posted to this thread for some time, I decided to add my comments in case others are taking Ixempra now or in the future. I read the posts to this thread as well as the two threads whose links were added here and on a previous thread. The posters’ comments were almost all negative with several commenting that it was the worst treatment they had ever had. A lot of people stopped taking it because the SEs were so harsh. Many of the entries were several years old, and it is possible higher doses were given back then andtherefore, more severe SE’s were experienced. At any rate so far my experience has been quite different.
Before I begin I have to admit that this drug is still new to me. I had my first dose three weeks ago, and my second treatment was today. I am having the chemo every three weeks. I do spend 6 hours at the cancer center since I have blood tests, see my MO, and have chemo and premeds all on the same day. BORING!
My first cycle was pretty uneventful. I did have achy legs on days 3 and 4. Tylenol didn’t help. Heating pad and hot bath gave some temporary relief. I was happy it only lasted 2 days and was tolerable. I did have some constipation for a couple of days, but that was easy to take care of. My hair started falling out suddenly and quickly 2 weeks after that first treatment. I am now almost completely bald, but I had little hair to begin with since I was still trying to grow it back after Halaven. I had no nausea or vomiting or headaches. I have some neuropathy from previous chemos, but so far it has not gotten worse with Ixempra. My appetite has returned. I had lost a significant amount of weight during the several months before Ixempra, mainly due to loss of appetite. Food tastes good again now. I actually gained a pound. My liver numbers were all elevated three weeks ago. Now AST and ALP are well within normals ranges, and ALK PHOS has decreased significantly. I don’t yet have the results for markers yet, but I hope they have stopped the rapid increase I have been seeing.
I have to add that I have had so many treatments that this is a Hail Mary play just as the few before it have been.My MO began the conversation with , “I know we have had this conversation several times already. You can stop treatment now or try” (Ixempra in this case). Since I still feel pretty good, I told him I would try it. I also told him that if it has a negative impact on my QOL, I would stop. He already understood how I felt.
Anyway, so here I am. This is not the worst treatment I have been on. I feel pretty darn good. I hope this keeps up and that the treatment will give me more time. I am enjoying life.I realize that I am probably posting this for no one right now, but perhaps someone will find it useful if they run across it in the future. I will probably post updates for a while.
Hugs and prayers from, Lynne
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Thanks 50sgirl, and it sounds like a really promising start! Hope you continue to feel good and enjoy life. Sharing your experiences is very helpful for the rest of us.
Take care
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I just wanted to add that I received the results of tumor markers (CA27.29). They dropped 300 points after just one cycle of Ixempra. They are still high, but I am encouraged. I had my second dose on Tuesday. It is now Saturday, and I have been feeling good. I was tired on Thursday, so I took the day to relax.
Lynn0 -
Thank you for posting Lynn. While I’m not on this drug at the moment I truly appreciate the information as I am at a point where my options are becoming increasingly limited. Interesting that you lost your hair on Halaven. I am set to start my fourth cycle next week and have only had a bit of thinning. Mind you, my MO has me on an 80% dose. Unfortunately, based on how I am feeling in terms of pain, I suspect it may not be working. I’ll know better when I scan in three weeks.
So glad you are tolerating the treatment well and that it seems to be doing its magic. Sending positive thoughts for a good long run on this drug.
Pa
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Sadiesservant, Thank yo for the positive thoughts. Yes, I did lose my hair while on Halaven. I remember it well because it was so sudden. I took a shower on the morning of my birthday, and most of my hair ended up on the shower floor. Happy birthday to me. Lol. Halaven was working well for me although I was on a reduced dose due to terrible mouth sores. Unfortunately, I developed severe joint pain, an uncommon side effect. It was so bad that I needed help getting out of a chair, needed to use a walker, and had difficulty holding eating utensils and brushing my teeth. My QOL was so badly impacted that my MO decided I needed to come off Halaven.
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Hmmm… interesting. Not severe enough to keep me in a chair (yet) but I have been having pain in weird places like my ankles and feet. I wondered if the feet thing was an odd presentation of neuropathy. The ankles I have no explanation for! It’s so staggering how much we need to sort through in terms of the disease and the side effects of treatment. I’m sorry you had to step away due to QOL issues. I know how difficult it is to make that decision.
Not sure if Ixempra is available here. Oddly, it’s mentioned in some protocols from years ago but doesn’t show up on the list of cancer drugs used by our provider
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I am back. I had chemo yesterday. I had no adverse effects from the treatment. My blood tests were all good although I don’t have tumor marker results yet. Liver numbers continue to be good. The past three weeks have gone very smoothly. I have had no SEs, my appetite has been good, and I feel stronger than I have in a while. I still don’t have a lot of energy, but that is not a big deal. I hope that Ixempra is working. I will report back with my tumor marker results when I have them
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Fabulous news Lynn. I'm so pleased to hear that you are doing well.
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I received the results for TMs today (CA27.29). They dropped another 227 points this cycle. Although they are still high, they have decreased from over 1400 to 877 since I began Ixempra. I am feeling good about that, hoping that it signifies that the treatment is working. I hope it continues to work and gives me more time.
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Hi Lynne, I lost track of you and have been wondering how you are doing. Thankful to see this recent post and hear that Ixempra seems to be working for you without any bad se's. So happy to hear you are feeling stronger and your appetite and attitude are good. Sending a hug and hoping you continue to feel good and are able to fully enjoy another spring.
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Jobur, It is good to hear from you. I have not been posting much lately. My profile needs to be updated once the site is back to normal. Some of my treatments no longer display correctly, but I think I have had more than a dozen lines of treatment , so I am running out of options. Of course, I realize that I have been particularly lucky to have made it through the past two years since my MO told me back then that it might be time to stop treatments. Fortunately, he has recommended several options that have given me some extra time without sacrificing my QOL. Ixempra has been a pleasant surprise so far. I look forward to spring and the opportunity to work in my garden, then hopefully summer and its ocean breezes, and dare I say it, maybe one more Christmas. Of course I will take it one day at a time. I am grateful for today and shouldn’t be greedy. How are you doing? I hope you are feeling good.
Hugs and prayers from, Lynne
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Hi Lynne -Thanks so much for updating this thread with your experience. I'm so happy to hear that it has been manageable and very happy to hear it has dropped your markers and improved your liver function. That's fantastic. It's on my list of future possibles,and I won't be afraid to try it now because of your post. Wishing you all the best, and enjoy that next round of seasons! Greedy is ok when it comes to that! LOLSending a huge hug your way!
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Lynne, I also appreciate your posts and continue to be in awe of you. I am keeping an eye on this one as well as my options become more limited. (Interestingly, this one doesn’t seem to be offered by the Cancer Agency anymore so your posts are particularly important as I build my case.)I say be greedy!
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Thank you for your comments. It is nice to know that some people are reading my entries. Sometimes I feel like I am writing for myself. Hahaha. Iwill continue to update this thread to document my experiences.
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I had infusion yesterday, and all went well. I have been feeling really good -better than I have in a long time. I have some energy, and my appetite has returned. I have gained back a few of the 30 pounds that I had lost during the couple of months before I started Ixempra. I think I would like to stay at my current weight, but I will not cut back on eating. I do like food. My MO told me that I am doing remarkably well. It was good to hear that. My blood tests were good again. I am still a bit anemic, but I have had anemia since I was diagnosed almost 7 years ago. At least I don’t need transfusions like I did for a while. I am supposed to have scans in the next few weeks. I am hoping that they show either improvement or stability. I would be REALLY disappointed if there was progression. I don’t have the results of the tumor markers yet. Hopefully, they are continuing to decrease.
Hugs and prayers from, Lynne0 -
Well, my tumor markers increased, but only by 4 points, so I consider that to be stable. I will take it although I was really hoping for 50-100 point drop. Maybe next time. As I said previously, I feel good, and I am hoping that the TM’s aren’t getting ready to climb again. I will see how scans look next month. In the meantime, I am looking forward to Easter. There will be 15 of us here. There will be lots of good food, conversations, laughter, and hugs. Life goes on
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Just popping in to report on scan results. They were posted to patient portal a few days ago. I haven’t met with my MO yet, but it looks like everything is stable. This is good news to me. WOOHOO! I will be having next infusion in a week
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Wonderful news Lynne! I am so pleased for you. Happy dance!
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Hello again. I had another infusion today. I am still feeling good. It might sound boring, but under the circumstances, “same old, same old” can be exciting. I have a case of the hungry horrors right now. Of course I want carbs and junk food, not nutritious things. What the heck, what have I got to lose. I think I will pig out tonight. The last couple of days have been less than exciting. Today I was at cancer center for 5 hours,, and yesterday I spent 2 1/2 hours in the optamologist’s office for evaluation and measurements to plan for treatment of cataracts. I will have surgery on one eye next month and the other eye in July. I kind of like planning things in the future. It feel a little like telling cancer that I’m giving it the finger and saying “SO THERE, TAKE THAT YOU BIG BULLY” A few weeks ago I renewed my driver’s license for 5 more years, and now here I am having cataract surgery and paying out of pocket for upgrade to one of the lenses so I won’t have to wear glasses except for reading. ( The basic implanted lenses get rid of the cataracts and surgeon implants lenses that are custom made to also correct distance vision. Insurance (Medicare and Medicare Supplemen t) pays 100% of that.Turns out I also have developed an astigmatism in one eye. In order to correct that, an upgraded lense can be implanted. If I don’t get the upgraded lense, I will still need glasses for both distances and reading. With the upgraded lense, I would only need glasses for reading. I would be able to buy the cheap reading glasses they sell w/o Rx in stores rather than ridiculously expensive glasses I need with Rx.. I will save money on glasses. So, I am thinking long-term and will pay for that upgrade just for the eye with astigmatism. ( They do make even better lenses that will also fix nearsightedness by automatically adjusting the lense to see near, intermediate and far objects as needed s so no glasses are needed. I find the concept to be amazing and intriguing, but it was way more money, and even I have my limits.))
Oh my goodness, I have gone far off topic. I apologize. Blame it on my premeds.
All I really need to report is :
1. Infusion, blood tests, appointment were good.
2. Scans show stability of Mets
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Woohoo! Great news Lynne. And you go as far off topic as you want. 😊 I get the planning ahead. Now that I have stepped away from work I am being completely irresponsible, planning purchasing for my garden and porch. I’m determined to finally enjoy my veranda on my old house after all these years.
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it’s been a week since my infusion, and I developed several mouth sores a few days ago. I called the cancer center to get an Rx for magic mouthwash. It has helped. The sores aren’t nearly as severe as they were when I was on Halaven. It is manageable. I also experienced a few days of achy legs. I had that during my first cycle. This time it wasn’t severe. Soaking in a nice warm bath and taking Tylenol helped. Allin-all, things are still going well.
Sadiesservant, I hope your plans for your garden and porch are moving ahead. I am planning to shop for some annuals today to put in pots on my front steps and back deck. It’s still a bit early to add anything to my perennial gardens, but they sure do need work!
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