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Residual Cancer after Neoadjuvant, what to do?

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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2016 at 7:15pm
A little trick I learned from a member here is to apply the Steve Jobs approach when asking questions of your oncologist. As the story goes, a bright developer would come to him with a great idea and after Steve listened to the presentation he would respond, 'great, now go make it better'.

So now when my onc gives me options or opinions I respond with 'good ideas, thanks for sharing, now how do we make it better'. Ha! thing is when you do that it keeps the wheels turning and I've found that encouraging anyone to keep going can turn up some unexpected great things. You never know what might be cooking inside your onc's head that he/she hasn't yet taken out of the oven!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2016 at 7:24pm
luzmia- it's great you are looking out for your sister. Our experience with Kaiser was not the best regarding my wife's (2) BCs. Now, bear in mind Grade 2 with no lymph nodes cancerous is much less aggressive than my wife's.
My wife says "Kaiser is not curious", that was her oncologist, who was not the best.
I want everybody to know we had Kaiser for 40+ yrs, and their nurses, and OBGYN, Pediatrics , Primary Care, surgeons,  are some of the best , imo.
We switched to Scripps (San Diego area) because we determined they have a bit of an edge for cancer treatment.
Luz- Kaiser's main treatment is "wait for symptoms". That is not unusual elsewhere either, but they don't like to do tests as prevention diagnosis. It's almost impossible to get MRI approved. PET/CT even harder, but my advice is to get another oncologist's opinion in the Scripps system, if that is possible, since you are in California.
I don't think any oncologist would jump to Xeloda, in any case but I'm not a doctor, but my wife has her 2nd battle w/ BC since 2008, and Kaiser did a decent surgery at the time. In fact, their surgeons are very good.
Normally, studies show chemo after surgery is optimized if you don't wait more than 30 days. But you don't know if your sister really could benefit, so another professional opinion could help.
My wife asked for a 2nd opinion (insurance, if she has it, usually covers) on radiation, and Scripps recommended another in the same radiologist's office, but my wife went to nearby UCSD for it, and insurance paid it, and they did concur with her oncologist at Scripps, so that's about the best you can do for peace of mind.

I think an MRI would be standard in 6 months at Kaiser, maybe a PET/CT once a yr if you insist. Scripps told my wife they are mainly concerned with the incision after mastectomy, and she needed radiation. At least with a MRI, your sister would know if anything's developing there. It's great she had nodes clear, that helps the prognosis for the future. Vascular invasion we worry about too, but it's a hard call to do more chemo because of that, even though TNBC travels thru the bloodstream, it requires an oncologist's opinion(2) for peace of mind... Hope this helps...





Edited by gordon15 - Mar 22 2016 at 8:11am
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roserosie View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2016 at 8:06pm
Hello,
I've been following this thread for a couple of weeks now and thought I would wait until my insurance went through for the Xeloda to tell my story. I was diagnosed for stage 3A in June of 2015, I went through chemo, I had AC and Taxol. I could have went with the carbo trial but decided to go to Sloan in Baskingridge NJ and they weren't taking part in this trial, So I did protocol. I don't know about any of you but I am so sick of hearing protocol. My tumor was 4.8 cm and I also knew that I had lymph node involvement. So prior to surgery my surgeon said she couldn't feel the lymph node any more and my breast had changed she thought it was going to be very positive going into surgery.
I had a bilateral mastectomy and she removed nine lymph nodes. Pathology came back with 8 out of nine lymph nodes still infected with cancer and my residual tumor was 3.3 cm. and lymphatic invasion. I was devastated, I begged my oncologist to give me more chemo and regretted not doing the carbo trial,even though I am Braca Negative she refused said she followed protocol,and there was no more treatment for me.  I hate regrets so I looked up the trial that is coming out that is either carbo or Xeloda. At first the trial was observation or carbo and now since this recent xeloda phase 3 study they have decided to add the xeloda. I had proton radiation because I had left side breast cancer. I had 25 sessions and two boosts. So I just went to see my oncologist from Sloan last week and she said to me I was going to call you,but saw that you were coming in this week,there is a drug, I said Xeloda she laughed and said you know all about this don't you, I said Yes, just give me the prescription. So tomorrow my delivery for Xeloda will be delivered and I will start my 8 cycles, I was so happy I didn't have to wait for the trial to begin. She said Sloan is starting to give Xeloda to TNBC patients that did not receive a PCR. I didn't have any issues with the insurance covering it so I will start tomorrow and I am so excited. 
My ki-67 is 10%, I was reading that when you have a low ki-67 it is very difficult to get a PCR, has anyone else read this?



Edited by roserosie - Mar 21 2016 at 8:17pm
triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2016 at 8:18pm
Yeah Roserosie,
So glad things worked out so well with getting Xeloda so quickly.  Please keep posting and let us know how things are going.  I pray this will spell NED for you.  "No Evidence of Disease"....
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (1) Thanks(1)   Quote StephandBrandon Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2016 at 9:33pm
Luzmia-  I have to agree with Gordon, my surgeon at Kaiser was/is AMAZING!  But my oncologist is a very 'standard of care' type.  My mom, husband and I have had to tell her about new TNBC therapies, and we had to insist on carbo and constantly ask about new trials that we are finding.  But I also know that she has tons of patients all with very different cancers, so I resigned myself to the fact that she's not going to be an expert in breast cancer (much less TNBC).  At the time of my diagnosis, we wanted to move quickly, so we stayed with Kaiser, but now that my open enrollment is here, we are definitely switching to the University of Colorado Cancer Center (Breast Center).  I just feel more comfortable with an oncologist who I don't feel I have to 'teach' all the latest in treatment.  I guess I would say, Kaiser was fine for 'standard of care', but you definitely have to advocate for yourself/sister.  Gordon's right on after treatment philosophy as well, Kaiser takes a "wait and see" approach, I had to insist on a PET scan and MRI in January (mine was clear, although it is still soon after treatment).  As for Xeloda, I got in a bit of an argument with my oncologist about it today, she is going to tow her line and will not prescribe it for me.  I started crying when she told me that they don't want to waste it now in case they need it later...it was so upsetting and disappointing.   

roserosie- I just wanted to give you a little peace of mind, I know our bodies are totally different, but I am brca - and I had carbo, and it didn't do much for my tumor.  My tumor didn't grow, but it didn't shrink like it did with AC/Taxol.  I know carbo has worked for a lot of women on here, but it didn't really work for me. 

For those of you on Xeloda, please keep us updated.  I am super jealous and wish I could have it too.  :-) 

I hope this helps!  Sending everyone nothing but NED vibes!!! 

Steph 
DX on 1/27/15, Stage 3 TNBC, A/C every 2 weeks for 8 weeks, Taxol/Carbo every week for 12 weeks, Carbo every 3rd

Local lymphnode recurrence 3/3/17; Keytruda Trial 3/29/17
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bethie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2016 at 11:58pm
Hi Roserosie,

I am sorry that you have had to fight for your care, I can certainly relate. The term my MO uses is "standard of care" and trust me, I am SICK of that term! How can a disease that is far from standard be treated in a "one size fits all" standard? I feel that in the next few years they will learn how to better identify more subtypes of TNBC and have better plan of attacks to take these on. Unfortunately for all of us, we are stuck with the standards and protocol. So glad we all have each other to help spread and educate each other and push each other to fight for the best options out there.

I have a few questions for you. Is the doctor that was saying she followed protocol the one that is now offering Xeloda? May I ask her name? I am trying to see a MO at Sloan and wondered if it was the same one.

Another question is did your MO do a enzyme blood test on you? Less than 10% of people have it but it can cause a severe reaction to Xeloda. It is important to know this before starting it.

Lastly I am unfamiliar with what Ki is. Can you explain this and let me know how to figure mine out?

My best to you!! 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2016 at 6:52am
Hi Bethie,
Yes the doctor who kept following protocol is the one that is now offering Xeloda. I had my
surgery 0n November 21st and my follow up with her was in December. At that time
the results from this Xeloda trial were not released. My doctor is from Sloan and she is in the Baskingridge location. Dr. Gorsky is my oncologist.
I don't know if she did an enzyme blood test but I will find out. You should be able to see your ki-67 on your path report you should have a number next to it. Let me know if you can't find it. I have to run to a meeting I will follow up with this board later. 
As stated by I think Tulips, Tiffany Traina from sloan also talked about this trial, I think this is one of the reasons (sloan)they started to use this and not as a trial. 
My Best to you!! 


triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2016 at 11:33am
Bethie,

  • Ki-67: Ki-67 is a protein in cells that increases as they prepare to divide into new cells. A staining process can measure the percentage of tumor cells that are positive for Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%.
triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2016 at 12:03pm
Rosierose thank you for sharing about xeloda. I can tell my Onc. That Sloan is offering it. I only had 5mm residual tumor but that still means there could be rogue cells in other parts of my body. If xeloda can kill those im all for it. I hope my Dr. Will be open to it.
     Does anyone else here on the west coast know of a place where they are using xeloda or participating in a study?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2016 at 5:19pm
My sister was put on xeloda, by her onc in Skagit. I would assume there's many clinics, and certainly Fred Hutch that offer it. FH is the most likely to be participating in a trial. You can go to their website and it will list the trials that they are participating in.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2016 at 5:22pm
Thsnk you i will do that. How did your sister do on it?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2016 at 10:06pm
Romnessprite1,
I know that the trial with xeloday and carbo I believe to be eligible you need atleast a 1 cm residual tumor size left after
neoadjovent chemo and then surgery,
Did you try your oncologist?
Rose
triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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I mentioned it too him once awhile back. He said he would look into it. I meet with him again on the 28th. It seems funny it would be based on size. The residual tumor i have is small but it is still extremely agessive. It only takes a rogue cell in the blood stream that is aggressive to set up shop on your liver or pancreas or wherever. The fact the chemo didnt kill it all and what is left is aggressive is really scarry. Im glad its out but i feel kind of like its not ALL out if you know what i mean!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 11:58am
Yes, I agree with you. I would want it as well, if not find a dr. that will give it to you. What was your ki-67 ?
triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 5:15pm
I dont have a ki-67 rating on my pathology report. Im not familiar with it. Tubule 3of 3, nuclear 2 of 3. The mitotic score is better than my pre-chemo its 1 of 3. So it is not reproducing itself as fast as it was. I just dont want to give it a rest. Its slowed down but not dead. I feel like if we could attack it again now while its weakened maybe we could kill it all.
😁 im talking like a soldier im really not an agressive person lol. I just want to have peace of mind.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote luzmia Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 5:23pm
Gordon and Steph
Thank you so much  for your response - I will contact my sister's  Onco and request for her to approve an MRI - ( it will be 6 months post  chemo in April ) I do agree with you that many Dr's only follow the "standard of care" for early stage and want to wait for   symptoms before any other treatment is done, but I think that if a re-occurrence is going to happen then it should be detected earlier rather than latter.  Thank you all for all the information on this forum- IT has helped me a lot in may ways. Best of health and a rapid  recovery for all of you going trough this journey and also to your family members.  
 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote R152410 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 6:38pm
Hi romnessprite1, 

My oncologist is at Swedish in Seattle, and she is prescribing Xeloda for me as a result of the recent study. (I had a fair amount of residual after neoadjuvant and my Ki-67 score did not decrease). However, she may not recommend it for someone with less than 1 cm (based on another's experience).  



Dx 04/2015, TNBC, BRCA -, 4 A/C, Taxol/Carbo, BMX 12/2015, RADs, 02/16 - 03/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 6:52pm
I will have to ask them for a ki test. Thank you now I know Swedish is doing it that will help. I go to overlake in Bellevue. They are a lot smaller than Swedish. So if they dont do xeloda then i can go to swedish. I looked at fred hutch website and it wasnt listed as a study. My Onc referred me to a study at u of w about pancreatic cancer because i have a genetic marker for that too! I think they use AC+T chemo for that too. None of my scans showed anything but they will do screenings now. Scarry stuff. If I didnt have faith in God I would be so overwhelmed and afraid right now that i dont think i could enjoy the life i have left.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 8:16pm
R, my sis had problems with the Xeloda. She ended up getting a half dose of it and was able to tolerate that.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2016 at 8:28pm
I don't think you need the ki-67 score it's normally next to the scores you previously wrote to me. Your one score is a 1, so that is the score that determines if your cells are dividing slow/medium or fast. I am a 2! So it's good that you were only rated a 1. But I understand I think we all understand your fear of reoccurance. It is scarry but someone posted something that really is true. If we live in fear were not really living. My oncologist told me unfortunately they just don't know who is going to have a reoccurance. When did you finish your surgery? Did you have radiation?
triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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