Ixempra-My experience

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. 

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!  

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.

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.

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

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.

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.

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

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

I have fabulous news!!!!!!!!

My tumor markers have come all the way down since I startesd ixempra!!!!!!!

I am so, so very happy!!!!

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.

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!

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!!