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Old 07-13-2005, 03:46 PM   #1
*_Irene from Tampa_*
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Well -

I had a CT with contrast last week and the small spot that we found through a PET scan about 3 weeks ago is now larger. They can not see at this time if it is in a lymph node behind the pancreas or attached to the pancreas or end of liver. I had liver resection last July and it has regrown and it looked pretty good on my last MRI.

They recommend I have an endoscopy done where they will be able to see the pancreas and hopefully get a biospy of the tumor. It is really concerning me since they keep mentioning the pancreas so much. I had a 19-9 tumor marker done (which is for pancreatic cancer and that came back normal) but they still want to rule out.

To make matters worse I am in the process of getting a new oncologist (mine transfered to San Antonio where she is heading the research center there. I really miss her) She was great and they are still calling her and asking her questions about my case here at Moffitt.

My question is - it looks like my next plan of action (if it is breast cancer and not some other type) is ABRAXANE. Has anyone had any experience with this drug? I think it is relatively new. From the Taxol family but easier tolerated, but pretty much the same side effects.

I have been trying to get as much info as I can on it in case this is going to be where I go next. They are going to check on some trials for me and also maybe AVASTIN which if I understand is another form of drug similar to Herceptin. I have been on Herceptin for 6 1/2 years now so not sure if my cancer has now changed it's DNA on me to outsmart it. Up to now though it has still been controllable and I feel I owe this to the Herceptin and really hate to switch now that such favorable reports have come out about it. We will see.

If anyone has had any experiece with ABRAXANE, I would love to hear from you.

Take care

Irene
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Old 07-13-2005, 03:58 PM   #2
Esther
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Irene:

I don't have any personal experience with Abraxane, but your description is what I've generally heard about it.

Hang in there! I think the most anxious part of being stage 4 is when it's time to re-evaluate your treatment plan. Once you settle into treatment you tend to relax a bit.

Hope they figure out the situation fairly soon, and things return to stage 4 normal. Keep us posted.
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Old 07-13-2005, 08:19 PM   #3
judiek
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Irene,

I know of someone that has been on abraxane and avastin for 8 weeks and she just had tm's drawn and one went down 60 pts in 8 weeks. I do believe that abraxane has same side effects as taxol.

I did taxol and avastin for 15 months...very doable tx plan. Lost most of my hair and had problems with nail beds lifting. I took b-6 and glutamine for neuropathy...kept it under control. Had to come off because I had modest progression. Best of luck to you...

warmly,

judiek
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Old 07-13-2005, 08:27 PM   #4
jessica
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Hi Irene~
I'm hoping the scope & biopsy will reveal that whatever that is they're seeing on your scans is just an artifact...hang in there...this waiting can be the most grueling part.
I was on abraxane 2 months ago to address a single, very stubborn, recurrent spot in my liver. I was NED for a year when this thing popped up & we addressed it w/a couple of attempts of TH, then RFA, then finally we moved on to Abraxane/Herceptin q3weeks. (The plan was to do 3 cycles, then scan. Unfortunately for me, on the 3rd cycle the chemo nurse discovered that they'd been dosing me incorrectly...triple dose Abraxane, but only 1/3 dose Herceptin. My scans showed little change & a new lung nodule, so we switched again to TCH. This combo has brought me back to NED!)
The Abraxane+Herceptin combo was a breeze! No pre-meds-so great! & the infusion time is just one hour-30mins Abraxane & 30mins Herceptin. It was so nice to be able to drive myself home safely & not feel all goofed up for the rest of the day. I had some flu-like symptoms for a couple of days following tx, but the triple dose of Herceptin alone used to make me feel that way.Nothing a couple of tylenol couldn't fix. Right now I think the Abraxane protocol is dosing q3weeks, but I do know there are other Abraxane trials using the weekly dose. Apparently dosing weekly has a slight anti-angiogenic benefit.
If you do need to go back on chemo, I hope you tolerate the Abraxane well. It has worked so well for so many people...it'll work for you too!
Keep the faith!

ps-my docs are considering resecting out that "problem" spot in my liver...I'm really intimidated by that surgery.may i contact you w/questions if we pursue resection?
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Old 07-15-2005, 10:06 AM   #5
Cindy H.
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I just started Abraxane but have had the same side effects asd Taxol. The good thing is the treatment is short! I have heard wonderful things about Avastin...it has put seveal lung cancers into remission...I hope to get it for my breast cancer since Herceptin did not work 100% for me.
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Old 07-15-2005, 03:52 PM   #6
*_IRENE FROM TAMPA_*
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Thank you all for your comments. It sure helps to hear other experiences

Jessica - by all means any questions I may answer on the resection, I would be more then happy to answer if I can.

Just let me know

Take care

Irene
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Old 07-16-2005, 04:16 PM   #7
Gina Popp
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Dear Irene and Jessica,

I am new to this site and not registered yet, but I felt like I should respond to you both. Before putting yourselves through so much scanning and chemo trials, be sure you KNOW what your serial CA 27/29 and serial Serum her-2 markers are on a regular basis. Keep the CA 27/29 below 10 and the her-2 below 15 or 12, depending on the assay and the "spots," artifacts, etc. will disappear off the scans. I have already "lived the dream" ...so many times... What I mean is that I have had mets in the liver (innumerable), bone and pelvis just fade away with ONLY HERCEPTIN, but the trick was in the dose. I have not had "chemo" since July, 1998, but have managed this horrible disease quite successfully just using Herceptin with dietary regimen and watching the blood markers, using them as biofeedback. When the markers go up, I take herceptin more often- or at a higher dose, when they go down and stay down, I take a small amount of herceptin once every 6 weeks or so. For many years, I only took Hercetin 5 times a year. But one time, before, I landed on this little trick, I unknowingly let my serum Her-2 markers go over 500 and was seeing spots pop up everywhere..., using a higher dosing of herceptin 8/ then 6, then 4 per week etc. , I brought the numbers back into range. Once in range, I just do what I have to do to keep them there. I have now done this regularly for years with amazing results and a High QOL (I am a single mom who supports herself by day and does cancer research by night) I also accidentally without realizing it had been taking in a lot of oleic acid in my diet and supplements. Now, we think that my combining the oleic acid with the herceptin is what was allowing me to use so little Herceptin and no chemo all along. I highly recommend that anyone who is her-2 positive check out the new research by Dr. Menendez on Oleic Acid combined with Herceptin. In my judgement, this combo is more powerful than ANY chemo combined with Herceptin AND OH SO MUCH LESS TOXIC THAN ANY OTHER CHEMO COCKTAIL going. I am sure every Onc out there would disagree because OLEIC acid is a lot cheaper to come by than most cancer drugs, but it has worked in combination with Herceptin for me. Many of the foods that contain the oleic acid are the very same ones many of you are already using with good results: Olive Oil, castor oil, canola oil, many nuts, especially walnuts, shark oil: all sharks' livers produce oleic acid naturally--has to make you wonder if that is what really keeps them from not having cancer; evening primrose oil-- a long touted Breast cancer remedy has oleic acid as does Black seed oil--an ancient Muslin remedy, and so many other foods and supplements that are by now all too familiar to those of us who struggle daily with this disease. Anyway, such has been my experience. If herceptin doesn't seem to be working the way it used to, try taking it differently. I have been on it off and on since early 1999 and my cancer has not circumvented it yet. It works completely differently from chemo and I do not believe that "cancer" can become resistant to it. As long as you have cells in your body over - expressing her-2 receptors which you can tell by following the tumor marker load in your blood on a regular basis (monthly is good), herceptin will keep working, provided you are basically healthy and that your immune system is strong enough to clean up the tumor - debris left by the herceptin....HOWEVER, if your CA 27/29 and serum her-2 markers are low and the cancer is still progressing, then, it is time to look for something else because most likely, the cancer that is progressing is being promoted by estrogen drivers or some other cancer promoter, not Her-2. That is just my opinion, but also, keep in mind that I am both ER and PR negative. If either of you are ER or PR positive or both, the above may not apply. Would appreciate comments and critique. My e-mail is GPOPP@Comcast.net. Best of luck to us all.
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