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!

Sheila

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 :
http://lbbc.kintera.org/faf/r.asp?t=4&i=1101210&u=1101210-400524258&e=7649100395

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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 – NYTimes.com


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.

http://www.nytimes.com/2014/04/07/business/breast-cancer-drug-shows-groundbreaking-results.html?hp&_r=0

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!

A modern-day hero


Our internet and social-media driven society yearns for heroes, no less than the Greek or Romans did before us. A hero today is nothing less than the demi-god of those days, although the parentage of our modern day heroes cannot be traced back to the gods themselves. We value our heroes for their courage and bravery in the face of threats and adversity.

The Olympic games is the stage where many of our champions fight for a medal, for many the highest achievement possible. In a popular viral video from a Dutch talent show a 9-year old girl astounds everyone with a beautiful rendition of Puccini’s O mio bambino caro. When she is asked by the professional jury what she wants to be if singing didn’t work out, she answered casually: I guess I’ll go to the Olympic games.

During the Winter games in Sochi, we were rooting for our Dutch speed skaters, who managed to win medal after medal until we were wondering: what happened to the competition? Each day the nation was mesmerized by what our speedskaters had accomplished.

This year I intended to follow the Paralympics. Primarily to follow Bibian Mentel, a Dutch snowboarder who has been a source of inspiration to me. However, before I knew it, the Paralympics were finished.

During these Paralympic games, Bibian Mentel won the Paralympic gold medal on the snowboard cross. She has won all the world cup events this season for the snowboard cross so it wasn’t a complete surprise. But perhaps her greatest achievement in the Paralympics was getting the snowboard crosss on the program this year.

I’ve been following Bibian Mentel (online) for a few months now. She is a most remarkable woman. She was working on qualifying for the 2002 Salt Lake City Olympics when she was diagnosed with bone cancer. Four months before the Olympics, her leg was amputated, but 7 months later she became national snow boarding champion in The Netherlands, on one leg (beating the ‘regular’ competition). Before that, she was champion for 6 years in a row.

 

Since then, Bibian has dedicated herself to working with children with handicaps teaching them how to snowboard and coaching them in the various competitions. Her Mentelity Foundation has a clear vision: to encourage children and adults with physical impairments to focus on what they can achieve. On and off the slopes.

Together with the Dutch NOC-NSF organization, Bibian Mentel has fought relentlessly to add snowboarding to the Paralympic Winter Games. This year was the first year the para-snowboard events were included in the program. Besides competing in the event and winning a gold medal, she is also the coach for the ski- and snowboard-team.

This week Bibian will be honored in Sochi with the Wang Youn Dai Award, also known as an IPC award, along with Australian alpine skier Toby Kane. This award recognizes two Paralympic sporters for their contribution to society. As the short film The History of the Paralympic Movement shows: “…power athletes create a more inclusive society and inspire the world to believe that anything is possible.”

What few know about Bibian Mentel is that she is also a five-time cancer survivor. Her cancer has returned and has metastasized, and she is living with it every day. She is a true survivor and a role model for anyone who values persistence. For her, the illness that resulted in her amputation will most likely also cause her death. But she is always smiling, facing her enemy with courage and determination.

As Benjamin Franklin said “Energy and persistence conquer all things.” And so my hero Bibian Mentel shows us that the weapons of the modern day hero-warrior are tools of the mind as well as the body: persistence, energy en optimism. For all of us, these true heroes really do make us believe that anything is possible.

If you’d like to read more about Bibian Mentel, please check her website at http://www.bibianmentel.com/ or the Mentelity Foundation.  Bibian Mentel’s book – Met mijn goede been uit bed – is available via the Mentelity Foundation (in Dutch only) by sending a mail to info@mentelity.

 

Another hospital visit


I find it increasingly difficult to write about myself in this blog. But today is a much needed update about my medical situation. First of all, last week on Wednesday I had an MRI-scan and CT-scan at the hospital. My last scans were in October 2013, so almost 6 months ago. Since then, the bloodtests have shown that the tumor markers have been relatively low, and the liver values stable.

This time, I was very tired after the scans. I just wanted to sleep right after the scans. It might be because I’ve been going to bed too late lately, but I think the contrast fluid had something to do with it. Also, the IV needle was a bit painful as it pressed against my wrist bone. The young male nurse who had placed it was very nice, I recognized him because his picture (and that of other colleagues) decorates the fence outside the hospital around the area where they are building a new addition. So each time I go in I see their faces. Nice to know they photographed real doctors and nurses instead of models!

Yesterday my specialist shared the results with me. There were no tumors visible on the MRI scan, so the hormone therapy did its work. I find it quite remarkable that the cancer in my breast has basically disappeared, without any form of surgery or radiation. It makes me wonder if hormone therapy might be a way to get rid of the cancer for other women as well?

The CT-scan showed a few tumors in the liver which remain stable. My specialist showed me the photos when I asked to see them. It’s a bit hard to see, since the CT-scan consists of horizontal cross-sections of the torso which are shown in 2-D. She pointed out that there were several lymph nodes which looked swollen. At least it is cause for some concern and she wants to have another CT-scan made of the intestines and stomach as well. So my scan is scheduled for April 30th.

In addition, I asked for a bone scan, which is scheduled for April 2nd. I’ve been having some pain in my pelvis. It could just be the result of my new dedication to running (I try to run once or twice a week) in which case it might just be muscles aching. Or it could be a side effect of the letrozole (the hormone therapy – which is actually a hormone inhibitor). Just to be safe, I’m getting a photo and a bone scan.

Sheila jogging in Eemnes
Sheila jogging in Eemnes

In any case, she told me not to worry. She’s keeping a close eye on my health and if there is cause for concern she will switch to another type of therapy.

So altogether, good news: the tumor in the breast is no longer visible and the ones in the liver are stable. I will keep you posted as the results come in.

 

Drug company: Ailing 7-year-old Josh Hardy will get medicine – CNN.com


Update from CNN: Josh Hardy will get the medicine he needs after all!

Kudos to @chimerix and Ken Moch for helping this boy and his family! I think it is an admirable decision by this CEO to help this child, even though he had previously stated their position. It is also a reminder that no matter what, it sometimes is necessary to change one’s point of view.
http://edition.cnn.com/2014/03/11/health/josh-hardy-drug-study/index.html?hpt=hp_c2

A drug company denies a drug to a dying child


Just scanning Twitter I came across this story of 7 year old Josh who is a 4-time cancer patient now dying of a virus for which there is a cure. Here is a beautiful video about Josh and an interview with his mom on CNN:

Josh Hardy’s mom on CNN 

[I’m having trouble embedding the CNN video, so included the link.]

The drug brincidofovir is being developed by @chimerix and is in de last phases prior to marketing authorization, which is expected by 2016. This company is denying this drug to Josh because if it helps one patient, it must help others as well. I suspect that the compassionate use of this drug in this phase could result in the risk that the drug is not accepted by the FDA and other authorities. This is because all ‘adverse events’ – from minor side effects to deaths of patients – have to be reported. When patients are close to dying and get this drug, if they die, it may prevent the drug from being approved even if the deaths are not caused by the drug. But there is a way out of this catch 22. 

There is a movement that could make a difference for patients with incurable cancer and for the drug companies that would help them if they could: it is called myTomorrows. This social enterprise aims to make drugs available to patients who need them when these drugs may not (yet) be approved for use. What if myTomorrows were able to provide brincidofovir on behalf of Chimerix? I’m just speculating now, and of course money is needed to be augment the limited supply that Chimerix has currently.  I believe this could be a win-win situation.

Read here what myTomorrows is all about. We are here to help!

Access to eHealth records for Patients


Some of you wanted to hear about my research project. I am working on a research proposal about making information available to patients with metastases. Lately I’ve been looking into the topic of eHealth. eHealth is about developing a digital information infrastructure to support the health care needs of patients and professionals.

In The Netherlands, we have a national eHealth infrastructure which can support hospitals with standards and data exchange formats. There is also a framework for developing patient portals based on the electronic health records (electronic patient dossiers – EPDs- as we call them here). But the development of eHealth projects is done at the local or regional level. And there they run into very practical problems: a lack of expertise, vendor lock-ins and complex organizations. Not to mention security issues and risks and limited budgets.

I’ve always focused on the issue of getting digital access to your personal data  (which is a key concept behind many systems now in use such as DigiD and Mijn Overheid.nl). But I have not worked in the health care sector before.

On January 21st I attended a meeting about patient portals. Besides myself, there were two patients who asked questions. Many information managers from hospitals were present as well. It is clear that they are struggling to make this work. A national organization – Nictiz – has developed infrastructural building blocks needed to build a patient portal. But in practice, it is difficult to make this work. 

Here’s a great video from Australia about their eHealth system.

Makes it look easy, doesn’t it?

At the moment, most hospitals have EPDs (systems with medical records) which are primarily focused on supporting the medical staff in the registration proces. They frequently need to share information with other medical professionals. But who can access the patient’s medical records? By law, a patient needs to give permission before his or her medical records can be shared by other health care professionals. To enable this, the website vzvz.nl offers an online registration form so that patients can indicate which professionals can access their health records.

Two initiatives seem promising: Medischegegevens.nl is a patient-oriented portal to which you can subscribe as patient. But only a few hospitals are involved. At the meeting, the founder explained how he set up this project when his daughter was diagnosed with a chronic disease at age 3. Another initiative is Iederedagbeter, an initiative by someone with whom I worked in the past who is also chronically ill.

To me, it seems that giving access to the patient is the first step. Here is where my personal experience and professional expertise can help others. For starters, there is no overview of which hospitals give access to patients. By accident I discovered that the AVL has a patient portal but I still have no access (not for metastases I think). This is an example of why it is so difficult for patients to find the information they (we) need: it is fragmented and not communicated.

This is a problem that needs solving. The way I see it, any portal could work as long as the EPD systems can provide the data and files. And that’s where I suspect the real problems lie. In other sectors most systems are closed – vendors don’t want to allow other vendors access to their systems. This is why the Dutch government is a strong advocate of open standards.  But it is up to the individual organizations who procure systems to use the standards that we’ve agreed on.

So the first issue is how can we force vendors to comply with open standards and to provide information (web)services. This is really a pre-requisite for patient portals to work. It also makes more sense to me to place the patient portals outside the domain of hospitals. Perhaps patient advocacy organizations can get involved in the discussion. The second issue is how to organise the information so that it is accessible . And again, this is where patient organizations can make a real contribution. So where should we start? Let’s turn the system around and start with what patients need.  Perhaps you can help me spread this post!