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Old 05-26-2010, 11:45 AM   #1
fullofbeans
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Please let me know what you think i should do next

You have seen my previous post now I want to dedicate this one to options and leave the bitterness of the other one:

-lymph node in breast area (2.3*1.3)
-4 supraclav nodes in right
-1 or 2 supraclav in nodes left

they suggest either systemic treatment or at the mo I am booked to the radiotherapy for a huge amount of treatment on the right only and the breast node...


I have seem treatment to lymph node by injecting ethanol they do it at the Mayo, and appearantly somehwere in norway.. (don't have the money I guess for mayo) anyone knows of any tother interventional radiology places doing that sort of thing? seem logical to me http://www.medscape.com/viewarticle/707412


Anyhow please come forward with treatment options
Many thanks
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 05-26-2010, 12:14 PM   #2
Lani
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Re: Please let me know what you think i should do next

sorry if I am loopy and missed it, but did you have a PET/CT to look for any other errant her2 deposits out there?

Did they her2 and ER test your biopsied node to be sure it is breast cancer and that your breast cancer did not change when it metastasized?

Will follow your link and try to read up a bit.
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Old 05-26-2010, 12:23 PM   #3
Lani
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Re: Please let me know what you think i should do next

cancer is not cancer is not cancer.

You are trying to compare dogs and snakes, not even dogs vs cats or apples vs oranges. What may work for one type of thyroid cancer would not in all likelihood work vs breast cancer or lung cancer.

Did someone diagnose you with thyroid cancer and I missed the post?


Before you start treating, wouldn't it make sense to know what you are trying to treat?How about sending your pathology specimens to MDAnderson or Stanford or Memorial Sloane Kettering for a second opinion to be sure what you are dealing with. Perhaps they can identify some targets.

If there are sodium-iodide symporter receptors on your tumor, there may even be treatment with radioactive iodine. But before going way out on a limb...

why not take a deep breath and take the time to discover what it is and where it is so you can make the best judgement as to how to proceed.

Hope this helped!
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Old 05-26-2010, 01:21 PM   #4
StephN
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Re: Please let me know what you think i should do next

Dear Beans -
Catching up after being away a few days. Man alive! My ire would be off the chart if I were in the same spot.

But then again, there is a problem inside you to address as quickly as all the information you need allows.

My first thought: Have you contacted the Tumor Vaccine Group in Seattle?? They have an immune system "rev up" procedure for stage IV:
http://depts.washington.edu/tumorvac...inical_126.php

Not sure they would consider you as "maximally treated to complete response." But you can contact Nicole and see what they have to say.

At least Drs. Disis and Salazar might be able to help you assess your situation.

You have my best thoughts for good and positive energy coming you way.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 05-26-2010, 01:28 PM   #5
fullofbeans
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Re: Please let me know what you think i should do next

Lani,

I agree with everything you say. No all I received is neck lung ab and pelvic CT scan. No pet scan.

I only have received FNA and they do not check for targets.

Not do not have thyroid cancer but I want to blast these nodes and not sure why not do that it seems logical to me they are running wild (I had 1 4 weeks ago and now 4).

At the mo they offering to do that using radiotherapy but just on one side which is stupid then at the same time the kind of radiation needed to blast both sides is too much +the breast nodes. Also I can have systemic treatment too.

I guess I can ask for another FNA for biopsy but the nodes are small about 1cm so it may be too small, but I can ask also not sure that can be sent to the us.. many things to deal with buty now that I thought about it yes it is the way forward.

Should I go for xeloda in the mean time..or even considering taxotere again since it is a fast one

so many questions..
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

Last edited by fullofbeans; 05-26-2010 at 01:52 PM..
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Old 05-26-2010, 01:30 PM   #6
fullofbeans
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Re: Please let me know what you think i should do next

StephN ,
yes I contacted them awaiting answer.. really not sure how to proceed about my treatment I did not want chemo but eprhaps I have no choice
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

Last edited by fullofbeans; 05-26-2010 at 02:40 PM..
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Old 05-27-2010, 02:28 AM   #7
Ellie F
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Re: Please let me know what you think i should do next

Hi FOB
I soo understand how difficult the dilema is!
As I mentioned in an earlier reply I think it is really important that they check the status of the nodes.It is possible to take a small biopsy using ultrasound and test it. It is done here in England as I had it!
You have had one vaccine.I am sure Dr Disis would advise whether you would be eligible for the other vaccine they are now in trials with that uses T cells. I understand that you need evidence of disease to participate.
What about the affected breast? Are they intending to do anything about checking for a new tumour? I am reminded of an article by Larry Norton where he talked about 'a weed bed' and cancer cells re-seeding in other areas of the same breast.It seems like they need to check this out and decide a course of action if the recurrence has developed from a new area of the breast.
Pleas don't forget what I posted earlier that in England you are entitled to a second opinion on the NHS.
Ellie
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Old 05-27-2010, 09:02 AM   #8
Lani
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Re: Please let me know what you think i should do next

besides the "reseeding" who is to say what they are calling a lymph node in the breast area is not a new tumor? What do they mean by the breast area?
If you mean the axillary area where the breast tumors drain to, then yes, they do do US guided biopsies, but open biopsies are considered far superior. If you DO mean in the breast, then can they say with certainty it is a lymph node and not some other benign or malignant entity?

Getting a biopsy of any and everything possible would seem to make sense ie,, Right supraclavicular, Left supraclavicular and "breast area" will let you know what you are fighting so you can bring in all the best ammunition. From my readings, fine needle biopsies of axillary nodes done under ultrasound are only considered when trying preoperatively to determine if there is disease past the sentinel node--they do not catch everything as the wrong part of a node ie unaffected part may be sampled and are not considered in any way equivalent to an open biopsy

Hope this helps!
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Old 05-27-2010, 09:04 AM   #9
Lani
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Re: Please let me know what you think i should do next

PS if you treat the nodes with radiation without biopsying first you may not find out what you are fighting and will be way behind in knowing what to do if and when it recurs elsewhere (which may be in an area difficult to biopsy)
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Old 05-27-2010, 09:49 AM   #10
Ellie F
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Re: Please let me know what you think i should do next

Totally agree Lani that it's important to know what exactly you are treating.I was trying to make the same point I guess that the node in the breast area may be another tumour and if so that needs removing and full histology.
One of the problems we tend to get here is that we cannot access PET scans unless we pay privately or you are on a clinical trial.
Cheers Ellie
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Old 05-27-2010, 10:03 AM   #11
Nancy L
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Re: Please let me know what you think i should do next

Lani echos exactly what Dr. Slamon (UCLA) told me---you need a biopsy that gives the oncologist all the information about the cancer to be treated to expect the best outcome. I assume you know who Dr. Slamon is and how much he has done to change Her2 disease from a death sentence into a treatable cancer. Docs used to assume if you had breast cancer and you had a recurrence, it had to be the same type of cancer. And I think there are many general oncologists who have this outdated belief. But breast cancer oncologists now know this is not true.

But this is also personal for me. When my sister was first diagnosed with breast cancer, her tumor was her2 negative. When she had liver mets and they biopsed them, the pathology came back her2 positive. Her oncologist said "that has to be wrong----she is her2 negative". At that time they had not discovered that tumors change characteristics. I have always wondered if she would still be alive today if they had given her Herceptin. I wish I would have said back then "give it to her anyway" but I didn't know what I know today about breast cancer.

As Dr. Slamon told me---"I am shooting in the dark without all the information about this recurrence." The oncologist in the desert (where I get my infusions) wanted to put me immediately on chemo. When the biopsy showed my recurrence was strongly Her2 positive, Dr. Slamon prescribed Herceptin plus Tykerb. I know Tykerb is not approved in the UK and this may not be the right formula for you anyway. But you need to find out what you have before letting them start treatment. You have time.
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Old 05-27-2010, 10:11 AM   #12
fullofbeans
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Re: Please let me know what you think i should do next

I phone theregistrar here and she said it was too small Ellie how big was your node??
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 05-27-2010, 10:41 AM   #13
Ellie F
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Re: Please let me know what you think i should do next

Hi FOB
It turned out I had 3 small nodes. The largest that they took the biopsy from under ultrasound was exactly 1.0cm x1.0 cms.I have double checked this to be sure. They managed to get quite a big (relatively speaking) piece which confirmed it was her 2 pos again!
Are the onc's saying locallised radiotherapy plus chemo and herceptin ?? I am assuming they are suggesting xeloda?

Ellie
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Old 05-27-2010, 10:44 AM   #14
Lani
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Re: Please let me know what you think i should do next

NancyL--have any other members of your family had( her2+) breast cancer?

I know they have only been testing for her2 rather recently making it difficult to know if those with breast cancer 10 or more years ago were her2+

There is a paper describing an X-linked her2+ breast cancer (usually ER+) having to do with a gene called Fox P3, which is found on T regulatory cells (part of the immune system)

Perhaps her2 testing was not that good when your sister had her primary--even now it is imperfect.

I met some nurses who work at Genentech at a breast cancer conference (they were there to get their continuing medical education credits) several years ago who said they had some mother-daughter pairs who had both been treated with herceptin.

If there is such a thing (hereditary her2+ breast cancer) it is probably rare, but if you don't go looking for it ie, retesting tumor specimens of relatives with breast cancer, you probably won't find it. Doesn't seem there is much money for such research (no drug company benefit, I guess)
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Old 05-27-2010, 10:47 AM   #15
Ellie F
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Re: Please let me know what you think i should do next

Sorry forgot this bit. If the biopsy turns out to be her 2 again could you persuade them to still give you herceptin on the NHS then request genentech provides you with 3 months free trial of tykerb? They offered this to the Government some time ago with the proviso that the NHS only pick up the bill if it works.
My own experience when I discussed this option with the onc was that they were not aware of this protocol so I told them about Nancy's recommendations from Dr S!
They were very sceptical that this would be effective without chemo but I added that she was living proof!!
Ellie
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Old 05-27-2010, 11:15 AM   #16
Lani
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Re: Please let me know what you think i should do next

Ellie--that would be a most unusual offer from Genentech as they do not make tykerb--Glaxo Smith Klein does.

Are you sure it wasn't an offer from GSK?
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Old 05-27-2010, 12:34 PM   #17
Ellie F
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Re: Please let me know what you think i should do next

Chemo brain strikes again!!
You are quite right it was made by GSK around the time NICE refused tykerb again on cost/QOL grounds.It remains unclearif the government will take up this offer.
Ellie
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Old 05-28-2010, 02:47 AM   #18
fullofbeans
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Re: Please let me know what you think i should do next

Many thanks lani and Ellie yes I will insist to get a breast MRI I am awaiting for biop of left (don't think they will de marker)Yes apparently can still get my herceptine.


Another question I have got this 2.3 cm node (in the breast (where the cancer used to beso they assuming a seedling from initial cancer) all they offering is a radiation boost.. what do you all think any other alternative. I get otherwise masectomy but it seems radical considering that I have a node on the left side. I would just like to se if I could treat it locally perhaps (i.e the idea of injecting alcohol + radiattherapy)

Many thanks
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 05-28-2010, 03:52 AM   #19
Ellie F
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Re: Please let me know what you think i should do next

FOB
A women at the breast clinic has had a similar recurrence to yours.She recurred around the area that she had a lumpectomy. She has had a wide excision followed by rads plus chemo. The onc strongly recommended further surgery as she felt the disease load would be lowered and there was less chance it would grow again in the same place. her view was that rads wpuld not hold it on it's own
Hope this helps. By the way she is doing great, see her every 3 weeks for herceptin.
Ellie
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Old 05-28-2010, 06:52 AM   #20
Lani
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Re: Please let me know what you think i should do next

Why not make the most the situation and have your treatment as if yours was a neoadjuvant case ie, try to shrink it with surgery first and in so doing get near-instant feedback as to whether the treatment you are undergoing is effective or not! That would require serial biopsies and would probably only happen in the UK if you are in a trial--what trials are open to you for first-line treatment of Stage IV?

Again, I would not start on anything until they determine whether what is in your right and left sided supraclavicular nodes is the same or different as what is in your breast node. Where in the breast is it?

At Stanford they have one of a handful of open MRIs in the world in which surgeries can be carried out including core biopsies. I thought there was one in Norway--not sure if they have the same capabilities and perhaps the UK has one???? Otherwise, biopsy under US of the breast seems to be done.

If you take all macroevidence of disease away without knowing what you are fighting ie, nodes with radiation and it is not clear that what is in your breast is the same as is in your nodes, and then start therapy how will you know if the therapy is working?

With regular neoadjuvant therapy, they usually leave the nodes in situ and then biopsy them later to see if the treatment cleared them as I understand it. The term neoadjuvant therapy is incorrect in your case (unless this is a new tumor/cancer), but I am simply trying to refer to pre-operative systemic treatment to shrink the tumor (if not eradicate it) which has the benefit of assuring you the treatment you are on is effective, and if not, will be switched very early on. Lots to be said for that I would think
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