Any Stage IV deciding to go off Herceptin?

[mamacze]

Hi Girls!
My oncologist wanted me to ask ... all of you who are Stage IV and NED for several years.... what are your treatment protocols? I was diagnosed in March 2004 with mets to the liver and lungs and have been on Herceptin since. The tumors in my liver and lungs responded right away to the Herceptin (and navelbene at first) and I have been NED since. Have any of you gone on a drug holiday? How many of you are using the Bayer serum test? If you are, did you have a baseline done? How often are you being scanned. Thank you all for your comments. Love Kim from CT

[Vi Schorpp]

it's great to "see" you back! I've missed your posts, and it sounds like things are well. Andrea Barnett Budin comes to mind, you might want to research some of her latest posts...Andi will probably check in, so I'm sure I'm jumping the gun.

[pattyz]

Kim,
At mets dx I went on Navelbine/Herceptin for several months. Follow-up scans showed NED in body. I was offered H alone and did that for ? maybe 2/3 mos.

Since my mets have been exlusively in my brain ever since then, I have not been on Herceptin by choice for the past near 6 yrs. I remain NED in body.

However, I have also been on Xeloda/ Temodar for 3 yrs for my brain mets. Don't know if that's made any difference to body, nor how to ever tell.

We added Tykerb last fall, but I had slight brain met progression until we upped my X/T chemo dosage/ went 7on/7off. "Stable" for now once again.

I decided to stop the Herceptin as it was not thought to cross the bbb and would not help the brain mets that were the priority issue.

pattyz

[Sheila]

Kim
Great to see your post....I am not NED, thus I continue on Herceptin with Taxol right now...seems every time I achieve stable or NED, I take a chemo holiday (never from Herceptin) and the big "C" rears its ugly head again.... so back on chemo with the Herceptin...this has been for the last 3 years....5 straight on Herceptin.

[Mary Jo]

Hi Kim,

I can't help with your question but did want to say "hi" and to say that it's SO good to "see" you again.

So glad you continue to do well and know you will find the answers you are looking for here.

Love and Peace,

Mary Jo

[Joe]

Kim,

I amswered your PM. Feel free to call Christine anytime this afternoon...your time.

Regards
Joe

[Kim in CA]

Hi Kim,

Great to hear from you! I have thought about going off Herceptin many times, but kind of hate to mess with the good thing I've got going! I am toying with the idea of taking a break when I reach the 5 yr mark of being NED. We will see how I feel about it then as that is still 2 years away.

Kim in Ca

PS. My onc will go along with pretty much whatever I decide at this point.

[Andrea Barnett Budin]

Please read my signature and cut and paste the link below for my story... AT THE BOTTOM OF THIS POST... BELOW THE BUTTERFLY

10 yrs of Herceptin. 10 yrs of remission.

My oncologist and my husband and I have decided to proceed, untethered yet ever vigilant. More jubilant than fearful, though it is surely a bit scary out here in uncharted waters.

But, guess I am used to being in the guinea pig group. Despite all odds and all the poor prognoses, I am called the miracle patient.

Onc was concerned about my building up a resistance to H. Believes the cancer cells that were in my body 10 yrs ago are gone. I can always return to H, if God forbid a trillion gezillion times an occasion arose. I have not burned any bridges behind me. And the H would likely work even better, says my Onc.

Plus I explain the toll te every 3 wk infusions were taking on me psychologically, without even realizing it.

I know Dennis Slamon has told a few women in similar circumstance, You're far enough out now. Don't worry. Go live your life.

I know 3 women who have chosen this route, much like me.

ANYONE ELSE??? Pray tell!!

Thoughts... Info... I surely understand the reservations, but...

I welcome your questions and any feedback!

With love, http://cdn-cf.aol.com/se/clip_art/gstres/anmls/animals-butterfly

http://her2support.org/vbulletin/showthread.php?t=35423

[Unregistered]

Hi Kim,

Congratulations on such a long time of NED! I was diagnosed at stage IV right off the bat. After 3 months of TCH, my scans showed NED. (That was in June 2007.) I continued with 3 more months of TCH, and I have been on Herceptin and Femara alone (with Zometa) ever since. I have only been NED on Herceptin alone for a bit over a year, so I have not yet had to face your wonderful dilemma. Although I am not absolutely sure, my impression is that my oncologist would continue the Herceptin as long as it was working and one's heart was doing OK. I believe that she has patients who have been on Herceptin alone for 4-6 years. You might have your oncologist contact her to get her opinion. She is an expert on Her2 positive disease. Her name is Dr. Hope Rugo, and she is at UCSF in San Francisco. The general number there is (415) 353-7070. Alternatively, Drs. Slamon, the one who discovered Herceptin, might be another good person to contact, as would Dr. Pegram.

I believe that both Christine and Andrea recently stopped their Herceptin treatments, but I think each of them were around 8 years out or so.

Good luck! I am encouraged by your success.

Best regards,


Jill

[fullofbeans]

1)
I have been NED for 1.8 year and feel that it is still early days to stop H now..will continue.

2)
I get a CT scan every 4 months


but not sure what I should do and would really be please is the other stage 4 NED answered that question! please could you tell us what is your own scanning schedule? Thanks for an interesting question

[Andrea Barnett Budin]

You can note from my signature that I did 9 mnths of Taxotere when my bc recurred throughout my liver. We added the Herceptin after the first set of scans (chest/abd/pelv -- w/ and w/o contrast) 8 wks from beginning chemo. Wanted to be sure the T was working. Some shrinkage was noted in ea tumor.

I remained on H till this past July. 10 yrs.

I started w/ev 8 wk scans. Then eventually moved to ev 3 mnths and then ev 4, w/the caveat that I should not go any longer between scans. I am NOW at ev 6 mnths.

I get full blood workup w/lipid profile, tumor markers, CBC and everything you can think of ev 3 mnths. I collect ev report and ev test result. I keep bld w/bld, scans w/scans, mammos w/mammos, etc.

I go for ev 6 mnth transvaginal pelv sono -- to be told that my ovaries look beautiful.

I was going ev 6 mnth for ECHO cardiograms and eventually graduated to annually.

I will continue the ECHOs b/c I developed a small peri-cardial effusion (fluid around my heart w/Taxotere). To keep an eye on it.

I had also developed a pleural effusion (around my lungs) w/Taxotere but that slowly dissipated after a long while being off Taxotere.

I still have my port (of necessity) since no veins in my good arm work. Not that any in my other arm ever worked to begin with...

I have been running on fumes, believing H kept mets at bay. I remained NED from May '99. Now, if you read my COME MEET THE NEW ME and other related posts, I have -- after 10 yrs -- decided to let go of my blankie.

5 yrs ago going off H was suggested and both my husband and I felt that we shouldn't go around fixing what wasn't broken. If we could withstand the H financially (insurance continued to cover the costs), psychologically (which I felt I was doing -- remaining on longterm chemotherapy for the rest of my life) and physically (getting few side effects other than chronic fatigue, no small matter but relatively speaking not the worst thing -- and -- getting good ECHOs) -- we felt I should stick w/the plan.

H, after all, is the *easy* chemo. It could have been so much worse. But now I am ready to move on, at my favorite oncologist's urging.

Please read my posts re this topic. Much to talk and think about...

I send you energy full of wellness... http://cdn-cf.aol.com/se/smi/2b00001c91/06

[Lani]

I remember having posted a couple of articles on the advantage of continuing herceptin even with brain mets

I did a quick search and came up with
http://theoncologist.alphamedpress.o...ull/12/12/1467

http://her2support.org/vbulletin/showthread.php
t=34972&highlight=brain+mets+continuing+herceptin

I am not reminding you of these papers to try to influence your treatment--just providing them for your armamentarium on which to base decisions, current or future

PS this was a very very brief search using her2's search engine--I may have posted more

[Sherryg683]

I have been on Herceptin ever since my diagnosis almost 3 years ago. I guess I will be on it forever. My Oncologist has mentioned that it's not proven that it's beneficial this far out but seeing the women on this board that are stage IV and still NED, it seemed like they were all on Herceptin indefinately, so mines fine with doing it, if I am. I hope to one day be 10 years out and consider getting off it, right now I'm just not there yet..sherryg683

[Sherryg683]

Oh yea, I now have scans every 6 months. I was doing this every 3 months the first 2 years. ..sherryg683

[mamacze]

To all my "sisters" - thank you for your feedback; and for those who have yet to log on, please keep it coming!

It seems like I see a pattern developing. It looks like we are staying on Herceptin for 9 - 10 years if our cardio can take it; then going off. Scans seem to settle at every 6 months. I also noted that in this small number of long term Herceptin users, at least 2 of us participated in the U of W vaccination trial. (Me and Kim from CA....anyone else?!)

And Lani, you are kind to attach articles, but darn it, I couldn't get them to open up. I will try on my own to search relevant articles.

Keep it coming angels! Stay well and strong!
Love Kim from CT

[StephN]

Dear Kim -
Great to learn that you are still doing so well and here "taking advice." Way to go, Lady!

I still get my Herceptin each three weeks. I did take a short 3-month "Herceptin Holiday" beginning of 2007, but huge stresses came along that I had no control over and I did not like feeling that my body was to at its best as well as unprotected from a cancer flare-up. So cut it short at the 3 months.

Used the Bayer (now Siemens) HER2 serum test three times and had nearly the same result each time.
I asked to have it again recently and my onc replied that she did not feel it was necessary as my other markers are taken regularly and have not moved. She would order it if there was suspicion of progression, since I have a solid baseline.

Scans to check body are PET/CT every 6 months, only this next time I am just having a plain CT (my idea).

My MUGA did drop some this last time, but we feel it happened due to other causes than Herceptin. It will be checked at 6 months instead of a year.

[jhandley]

I suggested having a break to my onc. who was not particularly in favour of it due to no studies being done. I would like to have one if I continue NED for another year...but I would like to have the her 2 test to monitor..this is not available in Australia yet.
I am keen to hear of others responding to this thread!
Jackie

[Joy]

Gosh it was great to hear from you and under such good circumstances. I am so excited that your helath seems so good. I don't have a lot of advice for you regarding herceptin. I just wanted to say Hi and Yay! Oh, and could you refresh me on which vaccine trial you participated in and do you credit that with your success? Only if you have time. My best wishes for continued goodness!

[mamacze]

Hey Joy!
Hi and Yay back at you!
Since I started my "poll" it has felt like I was coming back home...it warms my heart to see you, and Vi...Pattyz, Mary Jo, Kim in CA, Lani, StephN....all doing well and all getting on with your lives.
Joy, I don't know what to credit for my good health...some say it is an answer to prayer and yet we all know some very spiritual and devout people who have died. Some say it is my diet. Some feel it is the vaccine from U of W. (as an aside, Dr. Disis did say I was a responder). And of course there is Herceptin which I am sure is the primary reason I seem to hang in there. I just truly don't know; all I do know is that I am just so grateful to have these healthy years while I raise my 4 kids. I admit to feeling a bit of "survivor's guilt"
I am anguished to see that yours has progressed to your liver. Where is the justice?? Is your current cocktail holding it stable?
Stay well angel; your joy is inspirational.
Love Kim from Ct

[Barbara H.]

It's great to read your posts again, Kim. It's also encouraging to hear that more of us are thinking about taking a break from Herceptin. I'm not there yet, but I'm on a trial (Herceptin MCC- DM1) that seems to be working for me. I hope some day to have the opportunity to take a break.

Do not feel guilty. We are so pleased to hear your good news.

Best wishes,
Barbara H.

[Becky]

Hi Kim

I just had to say hello. Oddly, I got an email from Vicki today and hadn't heard from her in quite awhile.

If I were you, I would make an appointment to see Eric Winer at Dana Farber (since it is not extraordinarily a long drive for you) and discuss with him what his opinion is about going off of Herceptin (or lengthening the time between infusions - a weaning off process perhaps). Dr. Winer is an expert in Her2 bc as well and may be able to give some good advice to you on this subject.

Big hug to you!

Love, Becky

[rcj11]

My wife, Kathleen, was NED for 6 years maintained on Herceptin only. 6 months after she ceased the Herceptin infusions her cancer returned with multiple mets. She was removed from Herceptin because of fear of heart damage. In hindsight we should not have made that decision. We can't prove that the herceptin was still effective when she stopped taking it, but why take the chance especially when new research indicates that long term use of Herceptin does not increase risk of heart damage.

For information on Kathleen's treatment since the cancer returned see thread under "Ixabepilone & Tykerb. While the result of her treatment with ixabepilone & tykerb was favorable at 1st, her cancer returned while taking only Tykerb as a maintenance drug. She is now back on Herceptin & Abraxane but only for the past 2 weeks ( weekly infusions) so too early to know the effects. Our prayer is that the Herceptin is still effective for her.

[StephN]

Hi again -
rcj11's post reminded me that I don't think I mentioned that just prior to taking my 3-month Herceptin Holiday I had a Pet/Ct, complete labs and the HER2 serum assay. I was so clean on the scan and rock steady normal on everything else that I decided to take the break.

I am now wondering if RCJ11's Kathleen had a total screening before getting off Herceptin. The fact that her cancer returned so quickly makes me ask.

[Marily]

Hi,
I just wrote a note in the using Bayer her2 Alysa thread. when I started it was way at the beginning for its use my onc was always open to what I researched ... and I had no tumor markers at stage IV.
I just saw Dr Slamon and stopped using Herceptin about 8 weeks ago been on it for 7 1/2 years and started allgery reaction to it 1 year ago... I was also told I could stop Aromasin but I have not done this...
way too many changes too soon,..
(I also lost my onc who has been with me for 8 years so...now I wonder while Denny was so sure about stopping...and he looked So sure so truthful and smiling and made me feel so good about it....
Well I am now one of the group who did!!
we pray for the best and live to the fullest...
Hugs Marily

[rcj11]

StephN
Kathleen did have screenings before discontinuing Herceptin, complete except no CTC test. I wasn't aware of that test at the time & her oncologist didn't use the test until I insisted on it last month.

[Andrea Barnett Budin]

I too wanted to add -- in June 2008 I had my every 6 mnth CT scans (chest/abd/pelv). STABLE.

I also had my annual mammography and sonogram. And my complete blood work, with tumor markers. Had blood work in September. All NORMAL.

At the end of July I stopped Herceptin. It has a long shelf life my onc says. Stays in the system for quite a while.

Am due for next blood work in November (usually ev 3 mnths). Due for next 6 mnth CT scans in December.

Due for full blood work in November. http://cdn-cf.aol.com/se/clip_art/gstres/anmls/animals-butterfly

[mamacze]

Rcj11 - I am heartsick that your wife recurred so quickly after going off; and you are right to advise caution. Thank you so much for weighing in. What is her CTC test result? Would you advise CTC screening, now after what you have experienced?
Marily and Andi, you are both so inspirational. Thank you for sharing your stories. marily, I wonder if Dr. Slamon has criteria for how long we need to be NED on Herceptin before he recommends we go off - do you know?
Thank you all again for your kind comments.
Love Kim from CT

ps Becky - a big hug back at you...I miss your company - and if i could just clone your fine thinking mind...!! i hear from Vicki occasionally as well; she is good at staying in touch!

[Marily]

Sorry, Dr. Slamon did not give me criteria for how long we need to be NED on Herceptin before he recommends we go off - He told me "Since pt has been on Herceptin since 01 with rtn- ok to stop. (may have developed antibodies to Herceptin.)"
He told me that since seeing him a year ago when he could not give me a definate answer..they have more data on it and he recommends stopping.I guess I was so ? relieved in what he said I did not ask him where to find that criteria. I will try to see if it is possible to see that.
hugs

ps does anyone understand sigpic??? M

[kk1]

Hi Kim;

It's is so great to hear from you and that you are doing well. I just got back from a great trip to Tuscany and read you pm. This is a great thread you started and I'd like to add a few thoughts.

Steph's comment that you need a complete re-staging prior to ceasing Herceptin is right on target. A few years ago my Onc started the discussion that we should start thinking about maybe stopping H since I had been NED for several years. We started by being flexible on when I came for treatment. Basically come in every three weeks unless I had a conflict with travel or work. Often I was only coming in every 5-6 weeks, we kept scaning every 6 months and doing the CTC's every 6-8 weeks. All seemed to be going well after another year so we decided to stop the H completely--but before doing so he wanted to do a complete restaging will all the various scans, CT/PET top to bottom, brain MRI, bone scan, heart ect. Several of my other doc's thought all this testing was over kill but he said for both of our peace of mind he wanted to make sure we looked under all the rocks. Indeed even though both my CTC's and serum were low they found a small regrowth of what we believe was the original lesion in my liver so I never went off. I think it must have been growing very slowly and finally got large enough to just barely show up on the PET/CT scans. I got back to NED again with a liver resection and continued H and and AI only. The decision to not do any "nasty" chemo for this second reoccurence was based on the fact that the CTC's we low so we hoped that it was still localized. This NED lasted for another couple of years when the darn thing grew again in my liver with low CTC and serum. We added Tykerb/Xeloda to the H and I quickly regained NED. I doubt I will ever stop H, while I do get reoccurences I think the H is slowing it down and 6 months scan lets us know when/if we need to take out a bat and slap it down, while the CTC's tells us how hard we need to swing and how big of a bat. Kind of like a whack mole game.

With the current state of knowledge I don't think anyone can say with any certainly if you should or shouldn't go off. But for me my gut feeling from reading this board and my own experience is I would need 8-10 years of continous NED before I would consider stoping.

take care enjoy the fall leaves

[rcj11]

From RCJ11,

The CTC test was taken 1 week after she began weekly Herceptin & Abraxane infusions. The test showed NO ctc's. She will be given another test 4 weeks after beginning treatment & I will report results.

Can anyone explain this CTC test result so quickly after beginning new treatment when PET scan 1 week earlier showed significant progression? Is the test unreliable or unable to pick-up certain kinds of circulating cells? Please reply with any experiences having similar results or possible explanations.

Thanks

[Jackie07]

Found this off the <Georgetownuniversity.org> website:

September 11, 2008

Test Can Help Patient Determine Treatment Changes Earlier

A simple blood test could tell women with advanced breast cancer whether or not their treatments are working earlier than current methods. With the goal of tailoring cancer treatment for each individual, Minetta Liu, MD, (http://www.georgetownuniversityhospital.org/body.cfm?ID=8&?CFID=20913034&CFTOKEN=66843214&UserAction=DoctorDetails&doctorid=4210) researcher at Lombardi Comprehensive Cancer Center (http://lombardi.georgetown.edu/) and breast oncologist at Georgetown University Hospital, is studying this test with the hope that it will help doctors more reliably assess treatment efficacy for patients with metastatic breast cancer.

“It can take several weeks and sometimes months to determine if a particular cancer treatment is working because it can take that long to observe any significant radiographic changes in tumor size or appearance,” said Dr. Liu. “With this new blood test, we have a tool that might allow us to determine much sooner if a therapy is ineffective so that we can change therapy earlier and potentially make more significant improvements in survival.”

One of Dr. Liu’s patients, fifty-year-old Anne Crupi of Maryland, was diagnosed with stage-four breast cancer in October 2005. Anne received chemotherapy (http://www.georgetownuniversityhospital.org/body_fw.cfm?xyzpdqabc=0&id=555562&action=detail&AEProductID=Adam2004%5F1&AEArticleID=002324&AEArticleType=SpecialTopic) and radiation (http://www.georgetownuniversityhospital.org/body_fw.cfm?xyzpdqabc=0&id=555562&action=detail&AEProductIDSRC=Adam2004_1&AEArticleID=001918&AEProductID=Adam2004_1&AEProjectTypeIDURL=APT_1) and then underwent various scans to determine if her treatments were working. In addition, as a part of Dr. Liu’s study, Anne has a tube of blood drawn every month to see if there are cancer cells circulating in her blood stream. “I just think that if I can learn earlier that my chemo isn’t working, if it stops working, then I can switch treatments without having to wait too long. I thought if it would help me or someone else, I would be happy to do it. ”

Using the FDA-approved CellSearch™ technology, Dr. Liu and colleagues at Georgetown University Hospital measured the number of circulating tumor cells (CTC) in blood collected from women with metastatic breast cancer. The number of CTCs was correlated with disease response or progression as determined by standard radiology studies.

Based on previous research, a CTC count of five was used as the threshold. Dr. Liu and her colleagues observed a big difference between patients with CTC levels of 5 and above compared to those below 5. Seventy-one percent of patients who had a CTC count greater than or equal to five had disease progression, compared to only 32 percent of patients with a CTC count of less than five.

“A CTC count of five or greater at the time of restaging was associated with a 5.2 fold increase in a patient’s chance of having disease progression compared to CTC counts of less than five,” explained Dr. Liu.

“So far the good news is that my number has always been zero or one,” said Anne Crupi. “And it’s so easy. All they do is take a small tube of blood.”

Additional data suggest that the CTC assay is a more reliable means of assessing treatment response than other traditional serum based tumor markers currently in use. Currently, Dr. Liu serves at the national principal investigator of a clinical study that will evaluate the CTC results within the framework of a randomized clinical trial – eliminating possible variability caused by treatments administered.

“We have many treatment options for advanced breast cancer. The key is to find the most effective therapy for each patient. It shouldn’t take months to figure that out,” Dr. Liu concluded.

Media Contact: Marianne Worley
202-444-4659
mw32@georgetown.edu
Patient Contact: 202-342-2400

[Val Pfeiffer]

hi Kim--
It was great to see your post, and I'm glad you're well. As you know I was stage 3B, not stage 4, but I stayed on Herceptin alone for about 16-18 months after my initial treatments, and then chose to have quarterly Herceptin thereafter. I continued that until June, which was about another 2 years. I decided to quit that because I was afraid I might stop responding to Herceptin, and if I progress to Stage 4 I will need it again in the future. Different situation, but I wanted to share, and it was an excuse to say hello!

It stinks that I haven't had time to keep up with reading many posts on this site, but I can barely keep up at work and with school, so I don't have much time!

Take care!!
Val

[rcj11]

I promised to report test results.
Monday Kathi's PET scan showed her to be NED. This follows 2 CTC tests that reported no circulating tumor cells. This is, of course, great news. Herceptin seems to still be working for her. Also, confirms accuracy of CTC test that we can use in the future to watch re-activation of disease. The plan is for at least 2, maybe 4, additional cycles of Abraxane with Herceptin. Then maintenance on Herceptin. At first, I will insist on monthly CTC tests. Later, the CTC test will be less frequent, probably quarterly or whenever symptoms arise. We will not again abandom Herceptin unless it ceases to be effective & the cancer returns.

I hope this is helpfull

rcj11

[Vic]

What a treat to hear from you, Kim, and I've been joining in more lately, too, as Becky mentioned. Funny how we all surface about the same time around and I'm glad for that!

I can't offer any suggestions, but it sounds like you gleaned what you needed from all these great responses.

Miss you and glad you are doing fab,

XOXOXO,

Vicki

http://thumbp2.mail.vip.ac4.yahoo.com/tn?sid=2158331782&mid=ALQmvs4AATdjSSRXWQLsRRpfqq8&partid=2&f=514&fid=Trash (http://us.mc514.mail.yahoo.com/mc/showMessage?fid=Trash&sort=date&order=down&startMid=0&.rand=1034131059&da=0&midIndex=3&prevMid=1_31312_ALkmvs4AARxRSSRX8w6joFeJ9gg&nextMid=1_27896_ALgmvs4AAYJgSSRXYwj%2BpmmkgDQ&m=1_30621_AL0mvs4AAQcdSSRaTQy6%2BxRgTfI,1_30960_AL Qmvs4AAVCOSSRZiAdchRnMBAI,1_31312_ALkmvs4AARxRSSRX 8w6joFeJ9gg,1_31705_ALQmvs4AATdjSSRXWQLsRRpfqq8,1_ 27896_ALgmvs4AAYJgSSRXYwj%2BpmmkgDQ,1_26516_ALkmvs 4AAQIBSSRWLwYIhgXIbMk,1_25769_ALYmvs4AAYK5SSRUmwRk 6XAviDI,1_23378_ALYmvs4AAXc4SSRTswUhBlvmvl4,1_2291 4_ALcmvs4AAStWSSRTRAutyw9fTMU,&vs=1&mid=1_31705_ALQmvs4AATdjSSRXWQLsRRpfqq8&pid=2&fn=Vicki+in+Laguna+%282%29.jpg)

[Joan M]

Kim,

You're having great results with Herceptin, and I can understand how it's a hard decision to go off of it. Being stage IV since spring 2007 with one met to the lung that was cleared up via a wedge resection and then subsequently with radiofrequency ablation in 2008 when it recurred, and with recent brain surgery for a single met, I'll be on the drug for a while as long as my heart holds out.

It's the only drug I've been taking since my cancer advanced because with the local treatments for the lung and brain I then became NED. Right now I'm trying to decide whether to add Xeloda and/or Tykerb, but will have my brain radiation first in a few weeks.

I'm curious about the CTC test, and plan to ask my oncologist about getting the test.

Joan

[Marily]

I met my new Oncologist last week, and although he did not know of anyone doing the CTC he said I could have it done ,... so our lab looked it up and ordered the kit (a purple and pink topped vial.)
I am now 4 months off Herceptin
We Just did the CT/Pet scan the CTC and the ALYSA. Last week.
I received my results today.....
CT/PET clean, CTC 0%, AND ALYSA down from 9.5 to 7. So I am still Dancing with NED! We will continue with both blood tests every 6 weeks and every 3 months CT/PET. He also felt I should not go off Aromasin.. My Dr is from Canada and said there they use these drugs more to control cancer and here we use more chemo... So he feels it is best I stay on the Aromasin. So far all is well and I like my new Onc. He listens, and he is willing to try new things. (since I go in prepared with all sorts of information) we had a very good talk about where to go from here and we seem to be on the same wave length.. THANK YOU GOD! Hugs and I will keep you posted

[rcj11]

God makes the ultimate decisions, but we make most of the daily decision. Keep on top of your treatment. Drs are not all knowing & need your guidance.

Kathi & I are really happy for you. Keep in touch.
rcj11