Ixempra!

Brenda

Rx Milkshakes with bananas and peanut butter. Works every time. 👍

Brenda.

I turned 50 years old four months into my initial dx of breast cancer back in 2002. Hard to Imagine I turned 63 this June. 😱

When I signed up for this site I just picked diana50 as my name. Lol. On Inspire I am Diana60. 60 when mets appeared.

Gain your weight Brenda. Let us know when you can start again. My next chemo is sept 21. Then scans. Then we see where I am.

Take care everyone. 🙏😘

Hi Everyone,

My second opinion in Seattle went well. The oncologist we met with suggested doing Affinitor with an AI next. He didn't seem to be a huge fan of chemo because it affected the whole body. He was definitely a fan of a more targeted approach and said I should consider Ibrance with an AI after trying Affinitor. He was a little concerned about Ibrance affecting my bone marrow. After that, he suggested doing some testing of my cancer to get a "chemo menu" to follow. SCCA apparently can do tests for chemo sensitivity and genetic mutations. So I feel like I got a very specific plan from them to follow which was the goal of my visit. And I was also happy that they can be a resource going forward.

There weren't any trials available to me at the present time at SCCA but the onc there said I just missed getting into a trial they're doing on an oral form of Faslodex that is 40 times stronger than the injectible version. There were two arms to the study--one for people who hadn't had prior treatments and one for people who had. They found the last person they needed for the prior treatment arm just before my appointment. Oh well.

I just had my third infusion of Ixempra and am doing pretty well on it. A few aches and pains that I'm always worried are cancer related. I'm getting scanned on October 6th and will see my local oncologist on the 8th to discuss the results. My tumor markers dropped at the end of my second cycle (704 when I started Ixempra and 560 six weeks later). I'm glad they're down but was hoping for a more dramatic drop which I got when I was on Halaven.

Diana, I'm glad you're doing so well after 7 infusions. It gives me hope that I can get a decent amount of time out of Ixempra.

Lori, I hope your stomach cramps have subsided. The way you described them, they don't sound like fun.

Brenda, I really hope you can start gaining some weight. Maybe the feeding tube is worth looking into.

Well, just wanted to check in since it's been awhile since I posted. All in all, Ixempra has been much easier than I feared. I just hope my scans are good.

Update

Wanted to let you all know that I'm off lxempra and moving on to Gemzar. Liver tumor got bigger and some new small ones. Interesting b/c I feel good and all liver blood work in normal. Hoping to shrink the big one and get liver ablation in the near future.

Hope all of you doing ok. This cancer business is tough. Onward. For me new chemo is new hope. 👍

Take good care everyone.

Went to get tx #3 and onc decided not to give it. Neuropathy has seriously set in my feet/legs, hands and around my mouth. Blood counts were fine but my onc decided I needed a 3 week break to see if the neuropathy improves before continuing treatment as is. A dose reduction at this level of neuropathy would not have helped. Lost the rest of my hair this past go round, too. Will have a scan on the 19th of Oct. to see where things stand. Next tx on the 28th. Hope you all are doing well.

Bourscheid, sorry to hear of the brain mets. Great news on the liver mets, though. Hurrah for all good news! Poop on the bad! Hope all goes well with your meeting with the Radiation oncologist next week!! So sorry the neuropathy has gotten so bad on the Ixempra. My onc is always concerned about that. I think it is a se of every chemo I have ever been on. I have had to stop a couple because of it worsening. I'm on navelbine now and it hasn't been bad. I read this site because I'm thinking ixempra will be my next chemo and want to know what to expect. Hugs

Some things that really helped through the Ixempra:

1. Power recliner. Some days I literally couldn't stand without help so when Louie was at work, the lift chair helped, especially to get to the bathroom. I covered it with a soft bathroom rug to keep it clean from accidents. Soft pajamas.

2. Wheelchair and/or power chair. It is very important to get out (especially in the summer, which was when I did the Ixempra). Just going around the block would get my mind back to a more positive attitude.

3. Swimming was the most helpful true exercise. Got passes to the local rec center and went when it was most empty. Dog paddled in the lap pool with husband by side. Tried to complete 2-5 back and forth laps each day.

4. Fluids were difficult. Room temp club soda, tepid teas especially licorice tea, chicken broth. Be ready for unexpected vomiting. I kept a supply of the disposible bags from the clinic near by. And then drank club soda to re-hydrate. Pedialite can be good, but I needed it very cold! Popsicles were good also. Especially banana, coconut, lemon ices, etc. plain crackers

5. Stay ahead of neuropathy if possible. Gabapentin helps, I was up to 1200 mg per day. 900-1200 seems to keep tolerable. (For some, Lglutamine worked, but it just made me nauseous.). Cymbalta also helped tremendously. Added bonus, Cymbalta works as antidepressant.

6. In the evening, a hot bath with scented or un scented Epson salts. Tea, lights very low, and about an hour in the bath. Forget dinner, make it liquid. Broths.

7. Stay ahead of constipation. I could keep about 4 ounces of prune juice down. Have glycerin suppositories available, and fleets enemas ready for those very hard days. I would drink the juice, wait about an hour, use two suppositories, and hope for the best. If no results, then fleets when Louie got home in the afternoon. Also, be prepared for diarrhea (I was also on Tykerb though, so you may not have this.)

8. Sleep, sleep, sleep! I slept at least 16-18 hours a day. Had a hard time staying warm, so nice comforter to cuddle in. We would go to parades, car shows, picnics with family - always took a heavy blanket to lay on the ground, a pillow, and comforter to cuddle in. I can sleep anywhere. But at least I was out! Don't be afraid to go out - backyard, parks, etc. do what you can!

9. The 3rd to 4th days were the worst, just get through them and it is up hill until the next infusion. By the 3rd infusion, I would strongly suggest demanding a liter of hydration before, during, or after infusion! And also have the infusion slowed down! It is better to get an extra liter that day, than to end up coming in the next few days for fluids! It will mean extra time that day, but beats trying to get in later.

10. Mostly, a few days after infusion, my body would feel like I had been run over by a semi-truck. Hydrocodone (5 or 10 mg) would help dull that pain. I took one 5mg every eight hours, and 10mg a couple times per day.

11. Ginger chewy candy helped also.

Have your teeth checked, cleaned etc., if possible, before starting. I lost seven due to the Ixempra and had to get lower dentures. I also lost all hair. Some do not lose their hair. Mine is now growing very slow (saves tons on hairdressing trips! Bonus). It has been 3 years and is barely below my ears.

I was too sick too get the last infusion. But I did manage to stay out of the hospital. And it did get me to NED! And I have stayed with NED so far! That is very important to remember while doing this!

I watched (and slept through) a lot of videos. Louie got me a portable player, and would leave several movies close by to manage my time. Had a hard time reading, eyes changed weekly. Be prepared to see optometrist a few months after.

NO spicy foods! Your stomach will thank you to stay away from them.

Love and HUGS! Will write more as we remember what helped!

What happened to Ixempra peeps??? My daughter in her early 30's, extensive bone mets, brain mets, liver mets. She is on 2nd dose of Ixempra. It's been very rough. She needs fluids IV and is in much pain, mostly in the abdomen. So what gives? Does it get any better. She is getting it on Thursdays ever week, with Herceptin every 3rd wk, but by the weekend she is not able to be with the kids. We need to get the liver cleaner. That's my big concern.

Hope to hear from someone. Thanks

Hello. New to mets, Xeloda didn't work so I just started Ixempra in addition to. SE are terrible and I was on a reduced dose due to high liver enzyme counts. I have read to stay hydrated, any other tips? The pain is pure hell at the moment.... can hardly walk my feel hurt so bad and my mouth is so sore. Can't eat anything hard or large- feels like my jaw is going to break. I am 4 days out from the infusion. Hopefully SEs start to subside. Any tips are welcome!

Thanks lovely ladies

Ixemora didn't work for me. Off the treatment after two months, tried a couple of hormonals and that didn't work either, right now I am doing no treatment, my breathing was so bad. Couldn't walk and talk at the same time. NOt sure what I will do in the future, taking some time off to consider quality of life vs more chemo ..... hospice has come to educate me and for now I am going that route. They tell me I can quit anytime and go back to treatment, My oncologistnisnakso my hospice doctor so making transitions there should be easy. I am on oxygen now and that has made a world of difference. Last scan showed both lungs full of cancer. Liver cancer scans showed liver is stable. We'll see what the future brings. BTW! Ixempra side effects WERE horrible!! Mom all the time, imhaven'5 been on here for a while. Hope things are better for your daughter