update on my treatment

[Pam P]

My ca2729 had been climbing the last few months. This week it jumped to 600. I'd been on taxol/avastin & zometa since last May. Now I'm going to start gemzar & go back on herceptin. My onc. really debated whether to put me on taxol, carboplatin & herceptin. But decided that the taxol/carbo would really be hard for me to tolerate & that gemzar will be more tolerable. And the taxol/carbo can be saved for later. He said theres good data that herceptin works well with tax/carbo. But there's no specific data saying that herceptin is more effective with grmzar, abraxane, or ixempra (3 drugs I haven't had). He says that these combos are used in hopes they might be better than with the chemo alone, but it's not really known if they do. And that with these chemos & the herceptin deciding which to use is much like picking one out of a hat. I find that discouraging - I'd like a little more hope and assurance than that.

[ElaineM]

I don't have any suggestions. I just wanted to give you a cyber hug and tell you to keep putting one foot in front of the other.

[schoolteacher]

Pam,

Hope starting on the new drugs will help to bring you some peace of mind.

God Bless You.

Amelia

[Becky]

Dear Pam

Keep the faith. I just wanted to comment that Abraxane is the exact same active as Taxol but the taxol active has to be emulsified because it is extremely water insoluble. Taxol uses an emulsifier. Abraxane - what was done is that the active is bound to a type of sugar molecule. As we all know, sugar is water soluble so that bound sugar molecule drags the active along with it into water.

Abraxane, since it doesn't need the emulsifier (which is the component of Taxol that everyone is allergic too and is the reason we all need benadryl and decadron when we get Taxol infusions), it does not cause all those problems like Taxol because you don't need the steroid.

Secondly, there are studies on Abraxane in heavily pretreated women where weekly (three weeks on/one week off) infusions (versus every three weeks ) gave very good results.

I do not know much else about the other drugs but Ixempra works on the same cellular structures as taxanes (the telomeres) but has a different biochemical way of doing it.

Whatever you choose to do, make sure an anti Her2 drug is part of the combo.

I will be thinking about you.

[Pam P]

Thanks Elaine & Amelia for your kind thoughts, and thanks, Becky, also for the info on abraxane. My doc changed his mind about 3 or 4 times (or at least threw out 3-4 suggestions) during my appointment of different treatments to try next. Abraxane was his 1st idea. I think he doesn't have a preference over abraxane, gemzar, taxol or ixempra, meaning he has no evidence that one will work any better than the next.

Has anyone here had any luck on gemzar & herceptin? for any length of time? This is what I'm starting on now.

I seem to have hit a point of wondering if this is the beginning of a downward spiral. Now my doc isn't giving me any data or experience that the remaining drugs left to me can do much good. In almost 8 yrs of chemo the best is that it's kept the cancer from spreading beyond the bones, but it has spread to more bones. Never have I had NED for a break. Now am I at another turning point?

[WomanofSteel]

Keep up the faith I am sure that there is an answer and a turning point out there for you. I think it is a matter of just finding the right mix. Meanwhile there is always something new on the horizon, so we all have to keep fighting.

[Believe51]

Pam, I am so glad you posted because I have been wondering about you and how you are fairing. Reading your post made me need to let you know that you are always a thought away and constantly in my prayers. This dreadful disease is relentless and that is why we need to be even stronger than that. Eight years would make a person maybe feel a sense of defeat, I cannot even fathom a fight that long. Although unfair to comment since I do not have BC, I feel that this is not your downward spiral. There are times that Ed feels that way too so I do understand those feelings. The cancer has remained in the bones and no organ involvement is part of a big blessing.

Please try not to get discouraged as you embark on this new treatment regime. Remember that you are loved and prayed for. Keep the faith and the notion that we stand tall besides you in that ring. I will be sending special loving prayers from this point forward for your dance with NED. Maybe we will be dancing together if the timing is right. Love to you.>>Believe51

[Mary Anne in TX]

Hi Pam! Drug decisions are really hard. I did Herceptin, Taxol, Carboplatin after Adriamycin and Taxotere. They weren't easy, but they were very doable, Pam. I did the premeds and felt yuck for a little bit the 2nd day, but otherwise I did fine. I then did Herceptin and Navelbine, but my tumor markers began to go down right after H/T/C. I knew that we were holding gemzar in reserve incase one of the other choices didn't work.
Pam, you can do it! Whatever it is, you can do it! I'm cheering for ya. ma

[Pam P]

Thank you Believe & Mary Anne for your encouragement. I know I need to gear up for this new treatment physically & emotionally then go forward. I know you all know the scariness and worry and uncertainty. Our mission is to live and to try as hard as we can.

[CindyE]

Pam,
I'm sending you warm thoughts and prayers for healing and comfort during this latest fight. Take care and I hope you feel all our love and support for you.

[caya]

Pam,

I am sending you big hugs from Canada - You are a brave warrior... Keep up the fight, sounds like your onc. has many options for you.

all the best
caya

[Becky]

Hey Pam

Another thought, you should try a different anti hormonal. From your signature, you haven't tried them all - like maybe Aromosin or Arimidex - even Evista maybe. You should try to go through them to see if one of them might do the trick. Hormone positive cancer loves the bones and if you haven't been through all the drugs, keep trying.

[Pam P]

Becky - I'll ask my onc. about adding a hormone med too. Tamoxifen, Femara, Faslodex didn't work at all. I think my onc. concluded that others wouldn't help either in that case. But I'll ask - adding one would might help.

[Shobha]

My prayers for you, Pam. I pray that god will lead you to the right medicine to get rid of the mets!

love,
shobha

[Sheila]

Pam
I have been thinking about you too and wondering how you were doing...I think the gemzar or the Ixempra would be a great choice, with the Herceptin and an anto hormonal....save the Abraxane for later to give your body a break from the Taxanes...my oncologist told me that Ixempra, Doxil or Gemzar will be my next drug with the Herceptin....so far i have gotten 1 1/2 years of stable as in not progressing on the Taxol....
You are always in my thoughts and prayers....there are alot more drugs for them to use on you, and many more promising ones in our future!!!

[Pam P]

Thanks, Sheila & good to hear from you. Tomorrow I start gemzar and herceptin. I glad to be getting back on herceptin & hope this combo will will push the tumor markers way down. I see the dr. the following week & will ask about a hormonal. My guess is he'll say wait & see how the G&H alone does 1st. I think he prefers to try single or fewer meds at at time - then it's easier to know when something's effective which it is. It's such a trial & error guessing game - and I never was much of a gambling girl.

[ElaineM]

For Pam who wrote she is not a gambling gal and anyone else who needs this information. I started a tread awhile back called tissue testing. There are now 4-5 options for testing to find out which drugs will work the best and individualize cancer treatment for each person.
There was an article in the local paper that originally came from the associated press. The title of the article was "Tumors's genes could guide chemotherapy" and was about genetically tailored treatments.
I will try to find the thread I started and post it here or bring it up, so others can see it.

[ElaineM]

Okay here is the thread I promised.
http://her2support.org/vbulletin/showthread.php?t=37624&highlight=tissue+testing
Another promising link is
http://www.precisiontherapeutics.com/

[jones7676]

I sure can't offer you advice....but I do hope all goes well!

[Catherine]

Pam,

I am so glad that the techie gurus chimed in. I am always so impressed for the way the techies can discuss all the different drugs. Tomorrow will be here in a few minutes and I wish you well with treatment on Monday. Breath deeply, recite positive prayers or mantras, believe, believe....We are here for you. I am sorry that you have to go thru this.

Hugs to you, Catherine

[Pam P]

Thanks, Elaine for the link and to Catherine, Barb & all for encouragement. Ready, set, go...

[rcj11]

Kathleen will complete 6 cycles of Abraxane & Herceptin next week. She has been NED since the 3rd cycle. Her side effects were mild until the end of the 3rd cycle. Now they are more significent, no energy, loss of fingernails as well as hair. Even so, side effects are much milder than with her previous combination of Tykerb & Xeloda.

Kathleen will have a PET scan the following week & if still NED will begin Herceptin alone every 3 weeks. Her CTC tests have found no circulating cancer cells during the previous 3 months. Prior to the current bout with cancer she was maintained on Herceptin for 7 years with no noticeable side effects. Unfortunately, she was previously removed from Herceptin out of fear of heart damage. Pray that it works again!

rcj11

[ElaineM]

I have my fingers (and toes) crossed for your success.