ASCO 2014- what’s new in research for metastatic breast cancer

The metastatic Breast Cancer Network is hosting an online webinar featuring Dr. Dizon who will talk about news from ASCO 2014 for those living with metastatic breast cancer. ASCO is the American Society of Clinical Oncology and information on their 50th annual meeting can be found at
The webinar will be held this Thursday June 12th and will start at 18.30 PM Amsterdam time. Sign up below or via

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News from ASCO 2014:

What Is Relevant for Those Living With Metastatic Breast Cancer?

Thu, Jun 12, 12:30 PM – 1:30 PM ET

Featuring Dr. Don Dizon, Associate Professor at The Warren Alpert Medical School of Brown University and a board certified medical oncologist.
Register for webinar

Sponsored by MBCN and SHARE Cancer Support

Why you should register:

  • Learn about the latest research papers, trends and issues at the recent ASCO (American Society of Clinical Oncology) meeting in Chicago—specifically directed to those of us living with mbc
  • Listen to an informative, interesting and engaging speaker, Dr Don Dizon
  • Easy to register and easy to follow directions on how to call in to listen
  • Opportunity to ask questions

Hope you will join us!


MBCN is a national, independent, patient-led, nonprofit advocacy group dedicated to the unique concerns of the woman and men living with metastatic breast cancer. We strive to help those living with stage IV breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.
© 2014 Metastatic Breast Cancer Network. All rights reserved.
MBCN is a 501(C)(3) not-for-profit organization.
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Reflections on the conference

Dear Friends,

Because of an eventful and busy month of May, I haven’t had the time to reflect on the conference Nancy and I attended on April 26th in Philadelphia.

Let me take this opportunity to tell you about this experience. Nancy and I rented a car and left Washington on Friday afternoon. We made a quick stop at our friend Julie’s house, picked up an iced mocha and some tea at the Coffee Bean and Tea Leaf at the Hilton and then joined traffic out of the city. Lots of rain and bad traffic caused some delays. We stopped at Denny’s in Delaware to get a bite to eat. When we were kids our parents took us to Denny’s a few times.

We arrived at Valley Forge at around 10 pm and had a nice room at the Marriott. Saturday morning we drove to the Marriott in West Conshohocken for the conference.

The Metastatic Breast Cancer conference was organized by Living Beyond Breast Cancer. We all received a flower lei (plastic but very colorful) and a bag with folders and other things. There was a nice breakfast buffet and the conference room was already full when we arrived. We sat at a table and met the other ladies and gents there: Stacey, a nurse in her thirties from Pennsylvania, Sharon and Sherry from Newfoundland, Sheila and Carol from Tennessee and a couple I didn’t get a chance to talk to. What struck me is that you would never have guessed that any of these ladies was living with metastatic cancer. For most of us the cancer was in remission or under control. I was the only one at our table with mets in the liver. The others had mets in the lungs or bones, or both. Stacey had used mistletoe from Germany alongside her chemo and her scans showed no signs of cancer at all. The ladies from Newfoundland were also very sociable and positive. That could be said of all the people I encountered there. Besides ladies, there were quite a few men there as well. Some to support their wives, a few doctors and quite a few patients as well. In the workshop I attended about managing stress and anxiety, a few men spoke up about their experiences, which was very good I thought. So often we think of breast cancer as a women’s disease, but there are men who suffer from it as well.

The morning started with a welcome from Jean Sachs, of LBBC. LBBC’s mission is to connect people with breast cancer with trusted information and a community. Their vision is that no one impacted by breast cancer should feel alone.

Next, professor dr. Julie Gralow gave a very inspiring and informative keynote speech. She explained the developments in breast cancer research and summarized the most important results of the last few years. I will upload a report of her talk soon. Here are some of the things she shared with us that I did not know.

Each breast cancer is unique. We are moving into the genomic area of treatment which will become tailored to each individual. Breast cancer is caused by genetic mutations or changes in the DNA. When DNA is changed or damaged, the DNA is normally repaired or destroyed. With cancer, this does not happen.

There are 5 subtypes of breast cancer: Luminal A (hormone positive), Luminal B (partially hormone positive), Her2 positive, Triple negative and Basal. Each subtype requires a different treatment approach. Treatment also depends on the patient’s age, gender, menopausal or not, etc. Treatment finally depends on what is available. Not all treatments are available for all patients, it sometimes depends on where they live, insurance or costs etc.

Treatment options include chemotherapy (also called systemic treatment), hormonal therapy, biologic therapy. Research and clinical trials are now also focusing on genomics, immunotherapy (activating the body’s immune system) and combining these therapies. A new initiative of the National Cancer Institute (NCI) allows researchers to run clinical trials in a very dynamic way. All therapies will be included and combinations are made and changed based on initial trial results. So if one combination seems successful, the other arms (groups) of the study are discontinued.

After the keynote, we also attended Dr. Gralow’s lecture on clinical trials. She explained the way clinical trials work: Phase I studies try to determine if a substance is effective against a type of cancer. Phase II studies focus on the dosage safety and efficacy. Phase III are randomized clinical trials with large groups of patients. Usually the new drug is combined with an approved drug and patients are randomly assigned to one of the arms (groups) of the study. A patient does not know if the new drug is given. These trials involve thousands of patients and are reviewed by experts and boards. The results from the study need to be statically significant and the side effects need to be managable. If the drug is too toxic, sometimes approval is withdrawn.

One of the issues patients with metastatic cancer run into is that sometimes they cannot participate in clinical trials because of prior treatments which excludes them from the study. Dr. Gralow explained that the clinical trials are becoming more expensive to run because the criteria set by the FDA to determine if it works (efficacy) and if the drug is safe (safety) are becoming more difficult to measure. These are often measured by total survival time, but in order to measure this, the study needs to run until patients have died. She prefers another approach, which is to look at progression-free survival time: how long before the cancer starts to grow? She also expressed concerns about drugs becoming too expensive. Since she also works in developing countries, she sees real issues with accessibility.

The lunch was very nice and after the lunch there were workshops. I attended the workshop on managing stress and anxiety. What surprised me is that many people in the US take a drug to manage their stress and anxiety called Xanax. We did a meditation exercise and then a dancing exercise. So dancing is a way to manage stress. I will have to try that at work sometime!

Carol from Tennessee gave me a really good tip to talk to the ladies from MBCN, a network by and for metastatic patients. They organise yearly conferences and you can watch the videos from 2012 and 2013 on their site. Carol recommended the talk by Dr Virginia Kaklamani Understanding MBC, How it is followed in the Clinic and When to use Standard of Care or Clinical Trials. Also they have a terrific Guide for the Newly Diagnosed (this links to the PDF version of the guide).

The day concluded with a fun talk by a dancer/choreographer who herself has mets. She told a funny story about trying to keep her wig on using pantyhose but the pantyhose rolled up and her wig was catapulted onto another table at the restaurant. She also showed many funny photos of signs that made no sense (in an amusement park a sign said “Small parents may ride with children”) and made us all get up and dance to 70’s country music. We all blew bubbles and had a good time. It was a good conference and we left with a feeling that it had been worthwhile.

That evening Nancy and I had dinner at the Cheesecake Factory in the King of Prussia mall.


We didn’t attend the second day, since the workshops started early and covered topics such as working and insurance (in the US), brain mets and writing to cope with cancer. The keynote was about side effects of treatment so I skipped that too.

The main take-away from the conference is that there are many options for patients with mets. I also spoke with representatives of the Metastatic Breast Cancer Alliance (@MBCalliance) which unites various cancer and advocacy organisations.

Nancy and I went to Philadelphia and met Jen’s mom and dad for lunch (see my post City of Brotherly Love).

My next post will be about the Penn Wharton club and about Railsgirls in Amsterdam!





It’s been quite a month and I need to tell you what’s been going on with me.


First, the results from all the scans and labwork from April were good. I had an appointment on my mom’s birthday (May 7th),, but nearly missed it because I had remembered the wrong time. Fortunately, my doctor saw Victor and me in the waiting room and took her time.

The Trip

Later that day, we left for France in two cars: I drove my mom’s car and we took the two dogs, Puk and Jaap. Jaap is our Dalmatian dog from the dog rescue. Victor and Nancy followed with the luggage. We had two apartments side by side in the Hippotel in Le Touquet, about an hour south of Calais in Northern France. Thursday it rained all day but Nancy and I walked on the beach with the dogs. Friday was better and at the end of the day we had sun.


Le Touquet


The Bite

While I was sitting on the grass, Jaap jumped at Puk and wanted to bite him. I tried to intervene and was bitten myself. It hurt terribly, and I was bleeding. Jaap’s teeth were deep in my wrist and the bone hurt badly. It was the wrong thing to do – to try to stop him – and he had not meant to bite me. But there we were, my hand badly hurt. Victor dressed the wound and I lay down to try to get over the pain. The next day, Victor drove me back home, with Jaap on the back seat. Once we got back we went to the hospital where the doctor gave me a tetanus vaccination (mine had just expired) and prescribed an antibiotics cure.

The Shock

A week later, on Saturday, I noticed a rash developing. When I was in the hospital in oktober 2012, I had also developed a rash because of the antibiotics. Turns out I was still very allergic. That night, we went to the hospital again and the doctor prescribed anti-itch medication. I slept all day Sunday and Monday but Victor didn’t feel good about it and called the doctor. The doctor checked my pulse which he found too high and my bloodpressure too low. My temperature was 40.3 C. His conclusion was that I had an anaphylactic shock. The ambulance took me to the hospital where they pumped me full of fillers and other junk – adrenaline, dexamethasone, prednisone etc.

hands & IV

I had to stay two nights and was then discharged. My whole body is covered by the rash, but the medication makes it bearable. Here’s a photo of my arm:

rash arm

On Thursday I felt very weak – which turned out to be my low bloodpressure again (78/39). My doctor advised me to eat licorice to raise my bloodpressure.

The training

Friday I attended the training for the ambassadors for work and cancer. It was good to meet the others and be part of a group of like-minded individuals who have all had similar experiences. The past few days my face and legs have been swollen – my ankles are thick again. I hope to get back to work again this week and get back to normal.

Back to the City of Brotherly Love

Nancy and I went to Philly this morning after an exciting conference day yesterday (which I will discuss in my next post).
We met up with Jen’s parents who treated us to a very nice brunch on Third Street. Jen’s dad gave me a picture of Jen and me taken in Arlington on Thursday. I still have to upload my photos and videos which I hope to do tonight. It was wonderful to meet them and to walk around the historic district in Philly. The sun was shining and trees were starting to bloom.

Nancy and I in front Elfret’s alley in Philly.

We’re now in our hotel room by Reading Terminal, one of my favorite places! It is a fresh indoor market where local farmers and the Amish sell their produce and where you can eat breakfast, lunch or dinner. Tomorrow we will visit Penn – the University of Pennsylvania.

Making ‘work’ work for you

These past two weeks I’ve had a severe cold. Even though I was sick, I decided to go to back to work. But once there, I became irritated and angry. I know I shouldn’t have but there I was, having driven two hours in traffic to get to a meeting on time, and then the meeting turned out to be a waste of time. My colleagues thought so as well and decided to change the approach. But unlike them, I got a bit irritated.

Since I’m working for a government agency, much time is spent in meetings. But I have always tried to focus on results, even more so now that I am doing much better. I keep telling myself that I am not a bureaucrat and that I can really make a difference by making the projects that I work on run smoothly. And when that doesn’t happen, I sometimes get a little upset. Perhaps a bit foolish, but also due to my current health situation. I take medication which causes mood swings – something I have not told my co-workers because I find that very personal and I try to control it as much as possible. In addition to that, I’m also in menopause due to the cancer. Which besides the hot flashes also causes mood swings. And to top that all off, I had a bad cold and headache. Perhaps it would have been better to call in sick like normal people do….

This past week EenVandaag (a tv and news show) presented results of the study about employees with cancer. This study was done together with the NFK – the cancer organization for which I will do volunteer work on this topic.

The results showed that more than 25% of the people who responded lost their job within 2 years of getting cancer. What was interesting is that of the group with cancer, more than 85% were eager to go back to work despite being sick or still suffering the consequences. The study concluded that there is not enough support for (ex-)patients once they go back to work. It is a real shame that despite the intentions, apparently the gap between what is possible and desirable is too big to make it work. Also, cancer patients have a much higher unemployment rate (40% higher) than the rest of the population. It is really hard to find a job once you’ve had cancer.

The real challenge I think, is how to make your ‘work’ work for you. Speaking for myself, a lot has changed for me that makes it difficult or perhaps impossible to work the way I used to. And probably the way I used to work (lots of hours, lots of stress) isn’t good for me or anyone else. The most important difference for me is that I cannot deal with stress anymore. And I have to learn to slow down and not try to prove myself every day. I know I am not the only cancer patient with these issues. I am fortunate though that one of my colleagues understands exactly what I am going through.

At the end of May, the NFK has organized a training for the ambassador volunteers (like myself) to learn how to coach others in this proces. We will be trained to give workshops to employers, HR managers and doctors on how to communicate and work with employees with cancer.

Anyone interested in this topic (who speaks Dutch) is invited to attend the conference Grip op de werkvloer: werken met een chronische ziekte kan! Tuesday June 3 from 15.30-21:00 at Nyenrode, organized by KNMG and NFK.

My next post will be about my trip to the US. On Wednesday, I leave for the US to see my friends in DC and then go to the conference in Philadelpia. I will keep you posted.




Sheila’s fundraiser

Sheila’s Blog,

Dear friends,

I just registered for the Living Beyond Breast Cancer conference for patients living with advanced breast cancer. I have been fortunate in that my cancer is now in remission. But not everyone has that luck. For some, this conference is a chance to hope, to feel that they are not alone, and to be with other women who all share the same burden.

So please join me to help patients who don’t have the means to attend. The LBBC fund gives all the money raised directly to patients for travel grants.

Thanks for helping!


Follow This Link to visit my personal web page and help me in my efforts to support Living Beyond Breast Cancer


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Personal :


Sheila Ghosh

Medical update

Dear friends,

Last week I had a bone scan and a photo of my pelvis was made. I know, it sounds a bit odd, not like something you’d hang on the wall (although it might look interesting!). I also asked for a copy of my MRI and CT scans from March, which I received very quickly. And Wednesday I had an appointment with my doctor of internal medicine & oncology at AVL. Good news: nothing can be seen on the scans. I suppose the bone pains I get from time to time are caused by the medication I’m on (Letrozol) and perhaps because of over-exertion (yoga/pilates).

The results so far are great: the only remnants of cancer are in the liver. The blood values – specifically the tumor markers – are fine: CA15.3-II is at 13 kU/L and CEA at 6, meaning they are both within the normal range. My bilirubin levels are at 6 (micro mole/L) so that’s good too (when I was first diagnosed, it was at 50!). Only the other liver values remain high, but there’s nothing I can do about that.  When I return from my trip to the US for the patient conference, I will have another CT scan on April 30th to see if the lymph nodes are still swollen.

I just wanted to share a short film from Living Beyond Breast Cancer about women who are living with metastatic cancer. LLBC is organizing the patient conference that I will be attending while the rest of Holland is celebrating King’s Day (and my father in law is celebrating his 90th birthday). As you will see in the short film, these are young, strong women who were diagnosed years ago! I want to share the same message here: living and perhaps thriving with metastatic cancer is possible. Victor told me we got a call to participate in a research study about women who are tired after receiving cancer treatment. Since I wasn’t there he told the interviewer that I don’t have problems with excessive tiredness, sure I get tired at the end of a long day just like anyone else. Then he asked her, but you’re probably not asking patients who are metastatic, right? And she answered affirmatively. If your wife is metastatic, she can’t participate in the study. So often, we’re excluded from studies or ignored when there’s no reason for it. Sometimes it feels like people are afraid. As if you’ll die in front of them. Well, there’s nothing very wrong with me or anyone else with metastatic disease. As one of the women in the film so aptly puts it, “it’s not that I’m living with cancer, but cancer is living with me”.

I leave for Philly on April 23rd, the day after our anniversary. Take care!


Breast Cancer Drug Shows ‘Groundbreaking’ Results –

I will be going to Philadelphia at the end of April to attend a conference for patients with metastasized breast cancer, where breast cancer that has spread to other areas of the body. Nancy will be joining me in DC and then we’ll drive to Philadelphia together. I hope to hear more about research that is being done and will report back to you.

Yesterday, Victor and I were invited by Annet to attend a dinner in honor of her mother’s 91st birthday. It was a special occasion, and very nice to get to know Annet’s family. They were quite surprised to see how well I looked (and feel!). I only hope other patients can achieve the same kind of remission that has given me this second chance.

This article from the the NYTimes describes interesting drugs that are coming into Phase 3 clinical trials soon. It shows that more drug companies are investing in research to develop drugs for patients with metastasized breast cancer. This is good news for patients like me.

Breast Cancer Drug Shows ‘Groundbreaking’ Results

SAN DIEGO — Researchers say that a new type of drug can help prevent advanced breast cancer from worsening, potentially providing an important new treatment option for women and a blockbuster product for Pfizer.

In a clinical trial, the drug cut in half the risk that cancer would worsen, or progress, researchers said here Sunday. The median time before the disease progressed or the woman died was 20.2 months for those who received the drug, compared with 10.2 months for the control group.

“The magnitude of benefit we are seeing is not something commonly seen in cancer medicine studies,” Dr. Richard S. Finn, a principal investigator in the study, said in an interview. Dr. Finn, an oncologist at the University of California, Los Angeles, called the results “quite groundbreaking.”

The drug, known as palbociclib, also appeared to prolong survival but not by a statistically significant amount. Those who received the drug lived a median of 37.5 months compared with 33.3 months for those in the control group.

The results from the Phase 2, or mid-stage, study were presented here on Sunday at the annual meeting of the American Association for Cancer Research. They are being closely watched on Wall Street, because palbociclib is considered a jewel in Pfizer’s product pipeline, with analysts predicting annual sales of billions of dollars. Amgen is entitled to an 8 percent royalty on sales of the drug.

Strong as the results were, it is possible they will be a bit of a letdown to some investors.

That is partly because they were not quite as good as interim results presented about halfway through the trial. At that point, the difference in median progression-free survival was 26.1 months for palbociclib versus 7.5 months for the control group.

The lack of a statistically significant survival benefit could also give investors pause.

Dr. Finn said, however, that a statistically significant survival benefit should not have been expected at this point because only 61 of the 165 patients in the trial had died. Also, patients can use other drugs after leaving the trial, which can dilute any effect of palbociclib.

Palbociclib slows the runaway proliferation of cancer cells by inhibiting the activity of two related enzymes involved in cell division — cyclin-dependent kinases 4 and 6.

While Pfizer is in the lead to bring this new class of drugs to market, Novartis has begun late-stage testing of its own CDK 4/6 inhibitor. Eli Lilly is at an earlier stage, with some results for its drug scheduled to be presented here. While breast cancer is the initial focus, the drugs are being tested for other cancers.

Breast cancer specialists not involved in the study were encouraged. “This is a whole new avenue that we are going to exploit now,” said Dr. Adam M. Brufsky, professor of medicine at the University of Pittsburgh. “Most of us who do breast cancer are very excited by this.”

But Dr. Eric P. Winer, chief of women’s cancers at the Dana-Farber Cancer Institute in Boston, said larger studies were still needed.

“This is a small Phase 2 trial — not tiny, but not the kind of study that would typically lead to a change in practice,” he said.

The study, sponsored by Pfizer, involved 165 post-menopausal women who were receiving their initial treatment for recurring or metastatic breast cancer. The cancers were estrogen receptor-positive, meaning their growth was fueled by that hormone, but negative for Her2, a different protein.

About 60 to 65 percent of breast cancers fit that description, according to Dr. Dennis J. Slamon of U.C.L.A., another investigator in the study. Analysts at ISI Group, an investment research firm, estimate that about 50,000 American women a year would be eligible for palbociclib.

All the women in the trial took letrozole, a drug that blocks the synthesis of estrogen. Such drugs are standard initial therapy for this type of breast cancer. About half the women also received palbociclib, which was taken orally once a day for three out of every four weeks.

The biggest side effect, experienced by about three quarters of patients, was a decreased white blood cell count. But that did not lead to infections as it usually does, according to Dr. Finn, who said that the drug was generally well tolerated.

Still, many patients had their doses reduced because of side effects, and 13 percent of patients who received palbociclib dropped out of the study because of side effects, compared to 2 percent in the control group.

A big question is whether Pfizer will be able to win approval of the drug based on this study. The Food and Drug Administration normally requires larger Phase 3 studies, but sometimes makes exceptions for drugs for cancers and other life-threatening illnesses.

If Pfizer can get early approval, the drug could probably reach the market next year. If the company must complete a Phase 3 study, which is already underway, approval might be delayed a couple of years, according to ISI Group.

Dr. Mace L. Rothenberg, chief medical officer for Pfizer’s oncology division, said Thursday that the company was in discussions with the F.D.A. and had not yet decided whether to seek approval now.

In 2008, the F.D.A. granted accelerated approval to Genentech’s Avastin as a treatment for breast cancer based on a single trial in which the drug delayed disease progression by about five and a half months.

But the women who got Avastin did not live significantly longer, and subsequent studies showed a smaller effect in delaying progression. In 2011, the F.D.A. revoked approval of Avastin for breast cancer treatment.

Ambassador for the NFK?

Last week I received an invite for a conference for patients with metastatic breast cancer at the end of April in Philadelphia, the city where I went to college. It is a yearly event organized by Living Beyond Breast Cancer, a non-profit patient organization based in the US. Since then I’ve been thinking about going. Some of you already encouraged me to go, and Nancy is prepared to travel to Philly to attend the conference with me, so I won’t have to go alone. Today, my colleague and friend Yvonne encouraged me to go as well. So I’ve decided to go! The ticket is cheap and the conference itself is only 75 dollars. The hotel is not too expensive either, so no excuses there! So I’ll book my ticket this week and start organizing a trip to Philly, a place I called home for four years (ok, it was a long time ago, but still!).

I’m still a ‘board member’ of the Penn/Wharton club of The Netherlands and we’re planning to do a bid to organize the Wharton Global conference in Amsterdam in 2015. So who knows, perhaps I’ll have a reason to visit Penn as well. I’d love to see some of my East Coast friends while I’m there, but the time is short, so we’ll see.

This morning I had an interview in Utrecht with a manager and a projectleader from the Dutch federation of patient cancer organizations (Nederlandse Federatie van Kankerpatientorganisaties – NFK). I had applied for a volunteer position as an Ambassador to help people with cancer who have questions about (going back to) work.

Thirty people had applied to volunteer – they were counting on fifteen – and they are willing to accept everyone, and are meeting all the applicants, which I think is to their credit. So often, people judge others just on the ‘outside’ and the fact that they’re taking time to meet with each person who applied is really well done. While I was introducing myself someone was playing the accordeon outside – it was very strange. It turned out not to be an April Fool’s joke at all (that’s what I thought); no, the empty offices next to the NFK were now occupied by members of the elderly society (can’t quite think of the right translation but it’s close enough)  who were now playing the accordeon.

It was an interesting conversation and it was nice to finally meet some people who are working in the field. They are offering a training for all the volunteers at the end of May and also will meet with us four times this year to hear about our experiences. The work entails meeting with people – employees, businesses and patients – and answering questions they may have or pointing them in the right direction. It sounds interesting and I’m looking forward to the training.

After the meeting, I went to The Hague to finish my presentation and meet with my colleagues only to drive back to Utrecht two hours later for our meeting with other agencies. I presented the preliminary results of our Vision for data exchange and it was well received. At six pm, I drove home in my convertible in the sun – it was nearly 20 degrees centigrade. April has begun well!

Tomorrow I have a bone scan at the hospital and hopefully some time to relax in between the injection and the scan. Next week I’ll update you on the results. Enjoy spring everyone!