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

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.

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!

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.

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..

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

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

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!

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)

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

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.

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??

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

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)

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

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?

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

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

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

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

Re: Please let me know what you think i should do next
 

Lani

Tried to send you a private e-mail to answer your questions but I couldn't find an address. So everyone else, please excuse me using this thread to reach Lani.

I have always felt there was some connection between my sister's BC and mine. When I was diagnosed, Dr. Rugo told me it probably was some gene they have discovered yet coming down from my father's side. He died of prostate cancer. I wonder if my sister was always HER2 positive and if perhaps I was ER/PR positive and my tumor changed to negative before diagnosis. The erie thing for me about my sister, father and me is that we were all diagnosed very late stage even though we had all the typical screening tests on a regular basis, visited our physicians because we had other symptoms and none of us were detected by those screens or exams. For example, my sister had a mammo six months prior to diagnosis and mine was 10 months prior to diagnosis. My sister and I had almost identical size tumors and the same number of positive nodes---very odd.

I would consider paying to have my sister and my father's tumors tested using current science but I wouldn't know how to go about making it happen. I do believe there are answers to be found in families like mine, but as you said, there is no money in it for the drug companies. Maybe a Phd candidate will be curious enough to study this kind of situation in the future.

Oh, I asked Dr. Slamon if Her2 is inherited and he told me NO.

My sister's BC info is as follows:
Willie----Age 47 at diagnosis/died at age 54 (2002)
Pre menopausal

Stage III ductal carcinoma in situ of the left breast.(7x5x4 cm tumor with 11 of 18 lymph nodes positive)

Estrogen/Progesterone Receptor positive

Her2neu negative at diagnosis by a test they don't use anymore---unreliable I am told. When diagnosed metastatic, they tested the tumor removed from her liver and it came back Her2Neu positive using the FISH test. But as I said, they believed the second test was wrong rather than the first one.

My history

Age at diagnosis--57 (8/2004)

Post menopausal

Stage IIIC focal high-grade ductal carcinoma in situ of the left breast with invasive component (7x5x3cm tumor with 11 of 11 tested lymph nodes positive for metastatic carcinoma with extranodal spread).

Estrogen/Progestrerone Receptor negative
Her2neu positive by FISH (HER2:D17Z1 ratio of 4.03)
CT post surgery identified a single prominent left axillary/subpectoral lymph node measuring 11 mm.
Ki-67 staining was 70%
TNM Staging: pT3pN3pMX

Re: Please let me know what you think i should do next
 

Thanks Nancy. I will keep asking those here (I think I once started a thread asking if any had relatives with bc who were her2+ as well, but noone answered.

In the last 24 hours I have asked you and another on the board, so if this keeps up, maybe there will be enough for some PhD candidate to become interested in(funding, now that is another story!)

I will post the abstract of the article about the X-linked her2+ breast cancer for your interest.
CELL
Volume 129, Issue 7, 29 June 2007, Pages 1275-1286
doi:10.1016/j.cell.2007.04.034
Article


FOXP3 Is an X-Linked Breast Cancer Suppressor Gene and an Important Repressor of the HER-2/ErbB2 Oncogene
Tao Zuo2, Lizhong Wang1, Carl Morrison3, Xing Chang1, Huiming Zhang1, Weiquan Li1, Yan Liu1, Yin Wang1, Xingluo Liu3, Michael W.Y. Chan2, Jin-Qing Liu3, Richard Love4, Chang-gong Liu2, Virginia Godfrey5, Rulong Shen3, Tim H.-M. Huang2, Tianyu Yang3, Bae Keun Park6, Cun-Yu Wang6, Pan Zheng1, , and Yang Liu1, ,
1Division of Immunotherapy, Section of General Surgery, Department of Surgery, Comprehensive Cancer Center, and Program of Molecular Mechanisms of Disease, University of Michigan, Ann Arbor, MI 48109, USA
2Program in Molecular, Cellular, and Developmental Biology and Department of Molecular Virology, Immunology, and Medical Genetics, Ohio State University Medical Center and Comprehensive Cancer Center, Columbus, OH 43210, USA
3Department of Pathology, Ohio State University Medical Center and Comprehensive Cancer Center, Columbus, OH 43210, USA
4Department of Internal Medicine, Ohio State University Medical Center and Comprehensive Cancer Center, Columbus, OH 43210, USA
5Department of Pathology, University of North Carolina, Chapel Hill, NC 27599, USA
6Laboratory of Molecular Signaling and Apoptosis, Department of Biologic and Materials Sciences, School of Dentistry, University of Michigan, Ann Arbor, MI 48109, USA Received 6 July 2006; revised 12 September 2006; accepted 10 April 2007. Published online: June 14, 2007. Available online 14 June 2007.

SUMMARY
The X-linked Foxp3 is a member of the forkhead/ winged helix transcription factor family. Germ- line mutations cause lethal autoimmune dis- eases in males. Serendipitously, we observed that female mice heterozygous for the ‘‘scurfin’’ mutation of the Foxp3 gene (Foxp3sf/+) devel- oped cancer at a high rate. The majority of the cancers were mammary carcinomas in which the wild-type Foxp3 allele was inactivated and HER-2/ErbB2 was overexpressed. Foxp3 bound and repressed the HER-2/ErbB2 promoter. Dele- tion, functionally significant somatic mutations, and downregulation of the FOXP3 gene were commonly found in human breast cancer sam- ples and correlated significantly with HER-2/ ErbB2 overexpression, regardless of the status of HER-2 amplification. Our data demonstrate that FOXP3 is an X-linked breast cancer sup- pressor gene and an important regulator of the HER-2/ErbB2 oncogene.

When a male inherits an X chromosome affected by this FOX-P3 mutation, they can die in utero or be born with severe immunodeficiency with a named syndrome, IPEX., so I doubt this is what caused your father's prostate cancer. Interestingly they contrast her2 overexpression and her2 amplification perhaps part of the problem as to why your sister's her2 status results were inconsistant. By the way, one of the ways ER+her2- tumors excape antihormonal treatment is by becoming her2+ which also might be what happened to your sister. There are so many possibilities.

Thanks for all the info!

Re: Please let me know what you think i should do next
 

Hello Fullofbeans,

If you are not being treated at Royal Marsden, I would recommend that you get a referral there, since they seem to have a much more expertise and ways of getting things than other places do.

Best wishes,

Christine

Re: Please let me know what you think i should do next
 

Thank you all for your values info.

Basically now I want tykerb (now) whirslt i am looking at long term options.

How much and how do you get it in the UK?? does anyone knows ellie have you ever found out that info?

Re: Please let me know what you think i should do next
 

You could try to go private, but it might be expensive if you are not a patient. The local BUPA hospital wanted £60,000 from me for a year of herceptin before it was on the NHS, partly because they were billing for my oncologist, even though he was donating his time to his 'highest-risk her2-positive patient.' If you could get it privately through something like healthcare at home, it would be cheaper (since they administer outside of a hospital, they don't need to pay VAT).

Another option might be to look into trials via http://www.clinicaltrials.gov, which should have all of the GSK trials in Britain, since the company has publicly committed itself to putting all of its trials into this database, as well as some others.

There is a Genentech trial, for example, in which participants get either T-DM1 or Capecitabine + Lapatinib
http://www.clinicaltrials.gov/ct2/sh...U%3AGB&rank=17
There are, of course, participation criteria, but it might be worth considering since these two options both seem very good.

Re: Please let me know what you think i should do next
 

Couldn't help posting this followup to my previous post. The below report from ASCO confirms what I said about my sisters liver mets---they were Her2 positive but the oncs refused to believe the second test could be right. Getting a biopsy on reoccurence is very important to make sure you are getting drugs that will really help you.

"- Breast Cancers that Spread to the Liver May Change Biology, Impacting Treatment Effectiveness: A retrospective study of women with metastatic breast cancer showed that the biological characteristics of their primary tumors - including estrogen, progesterone, and HER2 status - often changes when the cancer spread to the liver, requiring a change in therapy for many women. "

Re: Please let me know what you think i should do next
 

"the oncs refused to believe the second test could be right.
Really? How long ago was that?

Re: Please let me know what you think i should do next
 

This was nine years ago when they didn't know tumors could change characteristics. And my sister was a patient at UCLA and Cedar Sinai. I would be willing to bet money many general oncologists don't know this today. Otherwise, why would they start treatment without all the markers reevaluated?

Re: Please let me know what you think i should do next
 

Hi Full of Beans,

I was so sorry to hear your news. I know how hard it is, but you can get through it. I think it is wise to contact Drs. Salazar and Disis. They may be able to offer some additional suggestions. They told us once we were patients, we are always patients. At least it is another opinion that could prove helpful. Don't forget, you responded really well the first time; that's a great indicator that you will respond well again! Hugs to you.-

Re: Please let me know what you think i should do next
 

Hi all,

Sorry for not giving news it had been full time here trying to get a plan into action, full time and I have been rather wired and obsessed with trying to find a solutio and devote most of my time to it and when I take a break I want to stay away from the computer, but thank you for being there.

First thing was going trying to get NED by radiotherapy and radiotherapy but the breast nodes have increased by the time they did the scan for radiotherapy and I think I may have felt another node starting (I am getting pretty good at it) so back on chemo instead, it makes sense (Taxol weekly)..

I was trying the avoid chemo to keep my immune system in good shape and have been also wanting to add tykerb and go on a patient prog but have to wait two weeks for the answer so I want to pay for the two weeks and see, just giving me time to think. I am also on maintenance Herceptin.

Thanks for the link christine and thanks for all the good wishes from everyone (missy we bothe recurred at 3.5 years). I have not lost hope and I am determined that is all I can tell you, and that is good news already.

Much love