Bad day

kareneg · 10-31-2006, 07:01 PM

I had to go off the Lapatinib trial because I progressed. As of October 4TH, My tumor marker CA 27-29 was 124. My Oncoligist put me on Xeloda I started on October 13th.I seen the doctor today and my marker is now 265, I just about passed out, I never thought this would happen. It has only been two weeks on the Xeloda has this happened to anyone else. I am so scared I don't think this is working, my doctor wants to give it one more cycle and then what please any advise will be so appreciated.
Thanks

Bev · 10-31-2006, 07:44 PM

Sorry Karen. I'm posting to keep you on the top of today's posts. I hope someone will post soon with a suggestion. BB

Tom · 10-31-2006, 08:08 PM

Dear Karen,

Try not to panic. It most likely hasn't had a chance to get a hold on the cancer. Could you please give us all more information about your tumor site. Where is it now? How big is it? What was your last treatment course before you began the lapatinib trial?

Please forgive me for not being familiar with your particular situation right now, but I have not been on a lot lately. The more we know about your treatment, the better folks can make suggestions.

Sincerely,
Tom

kareneg · 10-31-2006, 08:58 PM

Thanks Bev and Tom,

Here is what has happened so far. As od September 1998, I was diagnosed with stage 1 Breast cancer, had AC Chemotherapy, and was told all was good. Then in August 2001 I was told I was stage IV With several TOO MANY TOO COUNT tumors in my liver, as of then I was put on taxol and retested to see if I was her2pos and I was Fish test was a 10. Then in January 2002 Herceptin was added to the taxol. And was taken off taxol in June of 2002
From June 2002 to January 2005 I was on Herceptin once every three weeks.

Then I started to progress again. Then was put on Navelbine and herceptin,till May 2005. Then started tomprogress again, so doctor put me back on Taxol and herceptin plus Carbo, had a slight reaction to the Carbo in Febuary of this year so was taken off it and continued with Taxol and Herceptin till April and I started to progress again.

Then in June of this year was accepted on the Tykerb trial at Dana Farber and was chosen to have the tykerb plus herceptin. And at the begining of this month on October 4th I was told that the cancer was progressing th etumors in the liver three of them had grown 25%, and I also have lung mets now.
So I started Xeloda on the 13th of this month two weeks on one off 4500 mgs a day. And today I went to the doctor and was told my CA27-29 was now 265. I am scared and so confused. Any thoughts are deeply appriciated,Thanks

Tom · 10-31-2006, 09:21 PM

Karen,

My first thought with respect to the liver tumors, is to ask your oncologist to order a consult with a good surgeon, and inquire about cryoablation (percutaneous freezing) of the tumors. This, as well as other forms of ablation such as radio frequency ablation, are being used more often now when hepatic tumors become problematic to the patient's immediate prognosis. If you do a search of this website for those words, you may find a few articles I posted about it. It would seem to me that the liver metastases would be the most serious right now.

I hate to keep asking you more questions, but you didn't mention whether your BC was progesterone or estrogen receptor positive or negative. This is an important subset of tumor characteristics that may provide for additional treatment options. From looking at your chemotherapy plan, it seems that you are most likely estrogen and progesterone receptor negative, but it would help to know for sure.

I was also curious as to whether you had any type of biopsies of the liver tumors. It has been shown that the receptor status of BC tumors can change over time. This would be another important question to ask of your doctors.

kareneg · 10-31-2006, 09:38 PM

Hi Tom,

Sorry I neglected to say I am ER POS NOT SURE ABOUT THE PR, Have been on Tamoxfin for 1 1/2 years and Arimdex for five years. And also had a radio freqency ablation on one of the larger tumors in my liver. I guess the good thing through out this whole ordeal is that my liver functions have always been normal and I have no pain or signs what so ever that I have cancer in my liver, very scary! I have never had a biopsy of my liver tumors either. I see my doctor again on November 21st I hope and pray my markers go down or at least level off. But I have to admit 265 is too high for me. Through out the whole horrible ordeal this is the second highest reading I have ever had. The first being when I found out I was stage IV. I just don't know what to think I am very scared and confused. Thank you so much for your input i truely appreciate it.

Tom · 10-31-2006, 10:10 PM

Karen,

I swear that every time I start to log off I think of something else to ask you. This may sound stupid, but in your original post you stated that you had to go off a lapatinib trial. I was just curious. Were you in a trial that was a double blind study? Is it possible that you were NOT in fact receiving lapatinib?

I believe your doctor was right to start the Xeloda right away. Now I am wondering if he might add Herceptin to the mix. It has been shown that continued Herceptin can be of benefit even in those who have progressed while taking it. Perhaps you can torture your oncologist until he agrees to add Herceptin back to your treatment regimen, as it has been since April that you received any. Just a thought. Again, I really don't think that the Xeloda has had time to do it's thing.

One other thought is that cryoablation is sometimes more effective than radio frequency ablation when used to treat hepatic tumors.

Shell · 11-01-2006, 05:53 AM

Karen-

I am sorry to hear your news. I had lapatinib, but as part of the xeloda trial. I had to go off that trial too, because I progressed. But you should be able to inquire about the lapatinib EAP since you are taking the xeloda. Xeloda worked really well for me for 14 months, although we had to lower dosages to manage the hand/foot syndrome. Make sure to contact your doctor if it starts to develop at all! I hope you are able to stay on it at least another cycle or two to give it some time to see wheter it is working.

Take care,
Shell

Sheila · 11-01-2006, 06:01 AM

Karen
I agree that you should give it another cycle or 2 to work...I know the Xeloda took a little time for me, and this time is taking longer to reduce the mets....when do you see the Dr again? Another thing to remember, tumor markers can have a high incidence of error...mine were normal when I had mets, and others have had abnormal when they are NED.

IRENE FROM TAMPA · 11-01-2006, 06:02 AM

I have a question that may have been asked already, but when you were on Tykerb, was it in combination with another drug?

Can your doc. put you back on the Tykerb with the Xeloda since that is the combo for the original study and see how the combo works. and he already has you on the Xeloda./

I started in the trial in August and have just completed my 4th cycle. Nothing has changed much but I am holding stable. You need to give it some time to start working but I would definately ask about the combo and keep on top of it.

I also had mets to my liver for several years, had abalation but came back so finally decided on having the area resected (cut half of my liver off) I was fortunate that the tumors were in an area where they could do the surgery.

Good luck to you Karen and keep us posted to your progress.

Joy · 11-01-2006, 09:38 AM

I'm so sorry this is happening. I support all of Tom's and Shelia's thoughts. They have made suggestions for looking at this situation in a number of ways. I had great success with xeloda/taxotere/herceptin when my liver was a tumor. In some cases tumor markers will rise at the beginning of a treatment due to cell die-off, but I see that growth has been measured. I would give it another round and investigate the suggestions given here in the meantime.

Please take good care of yourself-eat well, supplement if you can, visualize, journal, therapy-whatever. This is your time to healthfully indulge yourself.

Please keep us posted and share your concerns.

kareneg · 11-01-2006, 11:32 AM

Thank you all so much for all your ideas I trulely appreciate this.
I was on the lapatnib trial with herceptin 1000mgs and weekly herceptin. I will ask my doctor about the EAP to add the lapatinib to the mix. I was told my tumors were inoperable but I will ask about the cryoablation .

I have been on herceptin since January 2001, the doctor has never taken me off. I start my second round on Xeloda on Friday, and also get my herceptin treatment. So I am having bloodwork on the 20th and see my doctor on the 21st of this month. I also may ask him to add Taxotere to the mix since I have never had this treatment before.

I am going to write down all of your suggestions and take them with me, this means the world to me all of your support and I love you all and pray for us all that soon there will be a way to live with this horrible monster so we can all get off this rollercoaster.

Please if there are any more suggestion I would deeply appreciate it. Again thank you all so much I feel so much better hearing from you all.