MUST DECIDE ASAP-NEED INFO on IXEMPRA and DOXIL Doxil

Lida · 05-24-2009, 03:34 PM

Hi her2 friends,
Sorry not to have written in a while; I have been dealing with medical issues with me and my family (both parents in the hospital)!
My tumor markers and liver enzymes are galloping now after a little over 5 months on Herceptin/Taxatere/Carboplatin and progression in liver as well! VERY SCARY TIME! My options are:
1. HERCEPTIN/IXEMPRA
2. DOXIL
3. DOXIL/HERCEPTIN.

If some of you knowlegable members, could give me help with these questions I would be SO GRATEFUL!

Regarding these options-
how are the white and platelet blood counts?
is it hard on liver, increased liver enzymes
how about digestive problems?
how about neuropathy?

anyone on Doxil plus Herceptin? ( I know there is increased possible cardio risk.)

Hearing from you, will give me insight in these meds and hope in this HARD, TRYING TIME, the HARDEST since met diagnosis, several years ago!
Lida

Rich66 · 05-24-2009, 06:39 PM

I don't know about Ixempra vs Doxil but...seems to be a lot of support recently for continuing Herceptin after progression on it. I believe Doxil is supposed to be better cardio wise than Adriamycin.
http://professional.cancerconsultant....aspx?id=36971
And the FDA has approved a cardio preventative:
http://www.cancer.gov/cancertopics/d...-hydrochloride

discussion on DOXIL + H here:
http://community.breastcancer.org/forum/8/topic/725181

Have you had Tykerb? Are you ER+?
What is your chemo background? What is the bili at?

Believe51 · 05-25-2009, 05:56 PM

Hey Lida, I can send you some information on Ixempra. Ed started his first treatment but he is using this alone right now. It is being used for mets and recurrence when patient fails on a Taxanes, Adriamycin or is resistant to these drugs altogether. Lots of research at Mighty Oak's house regarding Ixempra. P.M me if you want more information. This drug, even used alone is getting great results. It is also in an entirely new class of chemo drugs and the start to many more treatment options.

Ed did very well with first infusion. We did it without Emend for nausea and without a blood boosting shot. Going great here.>>Believe51

Lida · 05-25-2009, 07:04 PM

Believe,
Thanks for your reply. It is really helpful. I am glad Ed's first infusion went well; I was told by an onc that this could be a hard chemo to tolerate, but everyone is different!
Does Ed get a low dose?
Why is he not given Herceptin also?
Yes, please go to my profile and email the Ixempra info too.
Thanks so much, Lida

Lida · 05-25-2009, 07:19 PM

Rich,
Thanks for your reply. I will be looking through all of the sites you provided. I just finished Herceptin/Taxatere/Carboplatin which is now not working. For 9 years, I have had many chemos-Taxanes, (very effective all of them),Xeloda (very effective), Gemzar and Navelbine(not effective) Yes, I had Tykerb with Abraxane. It was a good combo; but even the good combos only work so long! I am er, and pr positive, but have not had much help from Tamoxifen or Aromasin. Femara seems to have helped for a while, (more than several months in 2001), but maybe I would have been in remission then anyway because I had just ended a very successful chemo-Herceptin/Taxatere that put me in a near complete remission. I have not had Herceptin together with Tykerb yet (Study shows some synergy.) and have not had Avastin (but worry about bleeding issues for Avastin) (Metronomic dosing looks good, but I do not think it is done much where I am.) Thus, right now I am looking at Ixempra or Doxil+-/Herceptin. Lida

GemmaG · 05-26-2009, 04:56 AM

I've had Doxil/Herceptin in Oct.08 to Jan.09, CT Scan showed multiple hepatic mets. Had so much issues with Doxil (rashes, darkening skin, nails, toes...)PM me.
Switched to Ixempra/Herceptin in Feb.09, 2 weeks on, 1 week off. CT Scan this month showed lymphnode in the right axilla has enlarged :-(
Had MRI of the liver and it showed cleared!!! I was giving up already. My onc will continue me on Herceptin/Ixempra after I see my surgeon. This lymphnode is causing me a lot of intense pain!!!
Hope you'll get the right combo and get rid of this disease!!!

Hugs

Lida · 05-26-2009, 07:16 PM

Dear Gemma and friends,
Thanks for your reply! I found it quite useful and interesting.I am glad you seem to have a combo that helps you. (except for that pesky lymph node) You are the first person I know who had Herceptin/Doxil! When you had Herceptin/Doxil did you have cardiovascular issues? I know it is kind of unusual to give Herceptin and Doxil together but that is what my onc is proposing
Does you onc give other patients Herceptin/Doxil too? Are you part of a trial for Herceptin/Doxil or just receiving it as a regular treatment?

Had you ever had liver mets before taking the Doxil? Did Doxil lower your white counts and platelets?
What are the major side effects of Ixempra?
Hope to hear from you soon during this very very hard time. Thank you from the bottom of my heart, Lida

p.s. Gemma, I sent you a private message since your email address listed did not work for me. You can send me a private message or use the email address in my profile.

BarbM · 05-26-2009, 08:57 PM

Lida,
I am having my 3rd infusion of Doxil tomorrow (every 4 weeks). I am also on Herceptin every 2 weeks. As long as the Mugas are good, I will continue on this route. I am not on a trial.
Hmmmm....side effects of Doxil haven't been fun. They usually appear at about week 5. Sure enough, that's when mine did. I had mouth sores, pain on swallowing, painful rashes on the tops of my legs from sliding into the seat of my car, tender feet and left hand. Only my left hand because I wear a lymphedema glove. Also, more swelling and pain with the lymphedema...fun! So, basically, I had hand/foot syndrome at areas of rubbing. Next time, I will be much more careful..also, B6 is supposed to be helpful for hand/foot..and l lysine for mouth sores. I've already started to take them.
My blood counts have been great! So, anyway, I'm going to ask for a reduction in dosage tomorrow at my infusion only because of the lymphedema. I will have a PET scan next month.....holding my breath.....

Kavy · 05-26-2009, 09:06 PM

Hi, Lida,
I do not have any information on Doxil, but I have been on Ixempra/Herceptin for 7 months now, and it is working for me. I had a CT scan in February and the 3 tumors in my left lung were smaller. My doctor says that all his patients on this drug have a good response.
My blood counts are most of the time normal, I just missed treatment one time while on this drug because of low white counts. I am due to another scan in June, so I will know more.
This is not an easy drug, but with time it seems that my body is adjusting to it. My first time was the worst, very, very tired, and strong shooting pain all over my body. The doctor lowered the dosage, and the side effects now are more tolerable. I feel very tired for a few days, I have neuropathy in hands and feet, mild diahrrea or mild constipation for a few days, lost my hair (it is growing back), no nausea or vomiting, no loss of appetite, change in taste bud for the first few days , no change in liver enzymes.
If you have any more questions, just PM me, and I will be happy to help.
I pray that the treatment you choose will the right for you.
Hugs,
KarlaV.

Lida · 05-31-2009, 02:44 PM

Dear Her2 friends,
Thank you so much for your valuable advice in my Herceptin/Ixempra vs. Herceptin/Doxil decision. It seems both can have efficacy, but I chose Ixempra right now since I was still a little unsettled about combining Herceptin with Doxil (cardio) as my onc wanted to do. If you gain more experience and knowledge with Ixempra and Doxil, let me know. I will try to keep you updated. I am so glad to be part of a group where people who truly understand this illness can share insight and support. Lida

Believe51 · 06-25-2009, 02:15 AM

Lida, how is the Ixempra working for you?? Wondering how you are making out and letting you know how well people are responding to this drug. Of course my prayers for you is just the same. Try to post if you have a moment, although I may have missed an update.>>Believe51

Lida · 06-28-2009, 02:51 PM

Dear Marie and her2 friends,
I have had 2 doses of Ixempra so far. My liver enzymes are still quite high, though they decreased a week ago. I have experienced low blood counts and edema. Lida

Believe51 · 07-03-2009, 02:29 PM

Lida, Ed has taken his 3rd infusion of Ixempra on the 26th. This time he is a little more sick with body aches/bone pain. And Kavy, I told him to rest, rest, rest and that is exactly what he is doing. I cannot remember offhand what his dose is but I am thinking of lowering it. His tumor markers went down 120 points in two and a half weeks.

We will not add Herceptin since it stopped working for him in the past. It is still an option with some other combos for him though. I would like to see if this drug passes the BBB and enters his brain. I do not know of anyone using this alone and with active brain mets. Wow, would I love to broadcast that one! Ixempra has a sister drug that does pass the BBB. In the meantime gang, this is working for many and I wish this to be our magic potion.

If we do stop the Ixempra for any reason, it will be to start another regime. Right now I would like to start him on Temodar for the brain mets but am curious as to what the Ixempra may be helping his brain with.

Good luck to us all as we embark on this drug together.>>Believe51