Category: Patient advocacy

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Update


The e-mail I sent (below) was in response to a call by Shirley Mertz from the Metastatic Breast Cancer Network, asking for volunteers who would like to share their story about living with metastatic cancer. I had sent my reply to my blog via e-mail, but the original message did not come through.

This past week I had another check-up at the hospital and this time Nancy joined me. Fortunately, everything is stable and my blood values were in line with last time. The drugs are working well for me. I found out I have the Luminal B subtype, which is ER positive and 50% PR positive (Her2 negative). I still have to finish my report of the conference. Tomorrow Victor is celebrating his birthday and his degree in tax law so it will have to wait for another day. Shirley sent me a very nice e-mail in reply.

I’ve enjoyed watching the World Cup games these last two weeks. I hope I’m back in time to watch the Dutch team on Monday against Chile, who seem quite good this year.

Till next time friends!

dear Shirley,
theank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

First of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk becausebof the mucositis and stomasitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From january 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozol). I’ve been in menopauze due to the cancer, not the chemo. I’ve gone back to work – I work as a IT architect contractibg for the government – and have been getting back in shape by execising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there there but inactive – so as lomg as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely gratefull for this second chance I’ve been giving at ut has nade me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve bee writing about my experiences at http://www.sheilaghosh.com in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherands
+ 31 (0)6 54 913 912

Energy and persistance conquor all things

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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!

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Making our government’s IT work


I had a very interesting day yesterday I thought I’d share with you in two posts. This post is about my work.

First I had planned to go to The Hague but since there were accidents on every road surrounding our little town of Eemnes I decided to work from home. I’ve been working for Logius for 9 months now on standards for data exchange. In november and december I completed the new architecture for Digikoppeling (for the die-hards, the Dutch version is available on www.logius.nl).

I’m currently interviewing experts on the trends they see in eGovernment and specifically for data exchange. It’s interesting because the work is now moving from the “back-end” to the “front-end”. Where our eGovernment services have been focused on creating a services oriented architecture (an IT infrastructure for government organizations to work together), we’re now moving to creating actual value (smart services) for the end-users.

For those of you not in IT, a services oriented architecture aims to develop reusable building blocks (modules based on web services) so we don’t have to build entirely new systems every time the structure of our government changes. The experts I interviewed I have come to know over the past year (some longer) and when I see them they always inquire after my health. It’s very kind and makes me feel good. I often wonder what will happen once the medication stops working, but these thoughts never last long

Just a bit of background about what’s happening in our government. It is common in The Netherlands to move responsibilities and public services from one organization to another. This is of course an expensive solution to problems because organizations need to adapt to their new responsibilities and need to buy new IT systems. We are in the middle of new major changes in our public services.

The Revenue Service is struggling with the (re-)distribution of additional stipends for low-income households (the system for stipends for rent and health insurance doesn’t work and will be changed again soon).

Starting in 2015 all social services for children and youth, and healthcare services for the elderly and chronically sick will need to be organized by the local municipalities.

I’m a member of a team that is working on developing key IT services once and reusing them so that we can avoid buying huge closed IT systems which don’t work when things change. The trend now is towards smaller web services and dynamic data services. Many people (myself included) want to be able to do everything online and on the road using our smart phones and tablets.
But government services are very complex. The rules and regulations are complex and contain a lot of exceptions. This means that any time anyone needs something – a permit, information, or has a complaint – many types of information needs to be assembled from various sources and needs to be assessed. Besides being big administrative organizations, our government also has many laws, rules, exceptions and policies, which are not always “programmable” and which change frequently. Just think of the tax laws which are updated yearly.  This move to smart services will be an interesting development to follow. By 2017, all dutch public services need to be accessible online, so there’s not a lot of time left.

My assignment is to write a new vision for our data exchange standards but the real challenge will be to make this all work in a way that is much easier than it is now. It’s an interesting and dynamic area and it is rewarding to work for a public cause.

On a more personal note, I’ve been following the eHealth trends. On January 21st, Nancy’s b-day, I attended a seminar on giving patients access to their health records. It was an interesting day and I had the chance to talk with some colleagues from Logius, some people I knew from other projects, and with information managers from hospitals. There are still very few patient portals: Medische Gegevens and IedereDagBeter are examples of patient portals (Dutch only). Since it is a subject that combines my professional expertise and personal experience, I try to keep up to date. A project leader from Radboud Medisch Centrum explained the plans for Hereismydata (Dutch) in which your data from all sorts of sources – such as Runkeeper, wearable devices and more – are combined to create a dashboard for you (and your doctor). Monday morning I spoke with a former colleague who now works for a national healthcare organization about the developments in this field. It could also be a topic for further study. For now, I will stick to patient advocacy using social media.

Next: Our Zonta Children’s Concert is coming on March 9th! Please come!

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New Year’s Resolutions


I returned to Holland on Christmas eve (got an upgrade to Business Class on Emirates for the first leg so had a very pleasant journey). It was wonderful to see Victor again after 18 days apart. We spent a quiet and relaxed Christmas together.

During my holidays in Malaysia I was able to join in the discussion organized by Kim, a very inspiring Ph.D. student in Professor van Weert’s research group. I really enjoyed the discussions that took place (anonymously). It made me think about my own ambitions and ideas.

I’ve come up with the following new year’s resolutions:

  1. To write one or more books about my experiences
  2. To set up a social network for people living with cancer (mostly stage 4 patients but anyone who wants to can join)
  3. To finish my fiction novel and (screen)plays

On January 4th, we went to our friend N’s house for her baby shower (and b-day). It was great fun. She sent me a link for a writing workshop and I signed up right away. In February I’m following the novel workshop and in March the “From Blog to Book” workshop. I spoke to Lisa who organizes and leads the workshops and I’m really looking forward to it.

This past week I started working again, but mostly I’m thinking about how I can make a difference for other people living with cancer. I spoke with a top oncologist – who is a good friend of one of our friends – this morning. I intend to solve 2 problems: getting patients with metastases the information they need and making information about treatments available to this group.

He suggested that I connect with other people and organizations. He mentioned that it seems that most patient organizations are not very effective in making changes. He also explained to me that the treatment that saved my life (Mitomycine-C) is not commonly used anymore because studies could not identify for which patients treatment would be effective. Sometimes it worked and sometimes it didn’t. This world-famous oncologist told me that if I had come to his hospital chances are I would not have been given this particular treatment. I replied: In that case, I wouldn’t be here now talking with you then. He informed me that one of the reasons patients don’t get the information they need is lack of time (average of 7 minutes per patient at the regional hospitals and 20 minutes at the national cancer center AVL). A second reason is that there are a lot of rules for research studies (set by national government, European Union and ethics committees) which prevent the right information from being shared.

My own oncologist had told me that it worked between 60-80% of the time.

So I’ve decided to focus on patient advocacy and empowerment. I will also try to focus on these topics in my research, but I intend to do the research primarily to support this goal. So far I’ve read some publications and formulated my research questions. I intended to do a content analysis but am still looking for good tools to automate the content analysis, so any tips are most welcome.

For now, best wishes for all of you for a wonderful 2014. I will report back next week after my checkup at the AVL Hospital.

Here’s a quote from brainy quote:

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.
Helen Keller
Read more at http://www.brainyquote.com/quotes/topics/topic_newyears.html#VwJza6IXL0Fh27Dw.99

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