Back


Yes, I’m back. I’m sorry it’s been so long since I’ve posted anything on my blog.

The last months of 2014 were hard for me. We lost another dear friend of ours, Patrick, who died far too young of cancer. He and his family have been very close friends of Nancy and myself since we were teenagers and feel like our extended family. When I was sick, they were there for us. His illness surfaced when it was too late for treatment. He passed away end of November. I wish I could say or do something to be supportive of his family. It makes me feel sad and angry at myself at the same time for not being there.

Just before Christmas, my father in law passed away. He was 90 years old and had a long and fulfilling life.

I’ve been working full-time since January and my work is satisfying. It means having to do less work for the societies that I’m involved in. I have had to reconsider how much time I spent on these activities.

I had scans in January which showed good results. The medication is still working and the cancer is still in remission. I couldn’t wish for better news at this time.

Right now, Victor and I are visiting my father in Malaysia. Thanks to my mom who is looking after our dog Jaap. Without her watching him, I don’t think we would have gone on this trip. My dad is doing well and working hard as a professor at UTP, where he leads the Geophysical Research Center. Wednesday we head back to Holland. I’ve been able to do some writing here, and have been reading a lot. Just finished Stoner by John Williams, Perfect by Rachel Joyce, and am now reading On Liberty by John Stuart Mill. This last one is a favorite of mine, and I highly recommend it to all who are wondering what is happening to the world we live in.

Losing a friend


On Sunday our dear friend Marc passed away. His sister and her husband had taken him back to their home from Canada. We had a chance to say goodbye to him on Saturday. He was tired and thin but still quick-witted. Sunday, his son arrived from Canada, just in time to see his dad one last time and then Marc died. He really stayed alive to see his children, although unfortunately his daughter couldn’t get here in time. I hope they will be okay, and I hope they know deep in their hearts how much he loved them. Marc supported me by mail when I got very sick. But his cancer kept growing while my medications worked. He was a reclusive man, who preferred to do things his own way. The last few weeks he thought a lot about his children and wanted to care for them. His sister did everything she could for him, caring for him every moment and arranging all the things he wanted to take care of. He had very few things in the end that he needed. A few pictures, his laptop. But even that he didn’t need anymore. It made me realize once again how very lucky I am, not only to have lived so well after my recovery but also to be able to enjoy life and being with my family and friends. Once I was living on the other side of the world, but I’m glad to be home. As for my health, everything is stable and I’m doing really well. I am working more hours, and doing more activities, but altogether I’m very happy. Tomorrow I get the results of my latest blood test and will give you an update.

A day of mourning


Today, our country is in mourning. We mourn the passengers and crew who died needlessly when MH-17 was shot down over the Ukraine by pro-Russian separatists. Our Minister of Foreign Affairs, Mr. Timmermans held an emotional speech at the UN, to repatriate the bodies of the victims. Today, at 4 pm, a minute of silence is held throughout the nation, as the first 40 wooden coffins arrived at Eindhoven airport. As I write this, the procession of 40 hearses is arriving at Hilversum. The coming days, as more flights arrive, the same ceremony will be repeated: a single bugle call – the military farewell – and each coffin is carried by military personnel from the plane to the hearses.

See the Dutch report here. See the CNN report here.

We did not personally know anyone on the plane, but many friends and colleagues did know one or more of the 193 Dutch victims. Many of them families with children who were on vacation. Three families lived nearby, in Hilversum. But there were victims of all nationalities, and we mourn all of them today.

As I write this, the procession of 200 hearses is arriving at Hilversum, where the identification of the bodies will take place. There were so many people along the roads, paying their respects to the victims. Not all victims have arrived yet. It really could have been any of us, everyone here is in a state of emotional shock.

All throughout the land, flags are half-mast. Here’s a picture of our flag at home:
vlag halfstok

 

See the In Memoriam here: rouwadvertentie-mh17

I find some solace in the words of John Steinbeck and Patrick Swayze:

John Steinbeck, American author
It’s so much darker when a light goes out than it would have been if it had never shone.

Patrick Swayze, American actor
When those you love die, the best you can do is honor their spirit for as long as you live. You make a commitment that you’re going to take whatever lesson that person or animal was trying to teach you, and you make it true in your own life… It’s a positive way to keep their spirit alive in the world, by keeping it alive in yourself.

 

both quotes are from http://dying.about.com/od/thegrievingprocess/fl/Words-of-Inspiration-Grief-Loss-and-Mourning.htm

 

Where’s my clinical trial?


What a great blog post! Yes, there are quite a few of us living well beyond the 2-3 years life expectancy for metastatic breast cancer patients. For me, I just passed the two-year mark today (it was two years ago that I was diagnosed with breast cancer, the mets were discovered two weeks later).

MBCNbuzz

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting…

View original post 390 more words

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

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 http://am.asco.org/.
The webinar will be held this Thursday June 12th and will start at 18.30 PM Amsterdam time. Sign up below or via mbcn.org.

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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!

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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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Metastatic Breast Cancer Network | P.O. Box 1449 | New York | NY | 10159

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.

cheesecakefactory

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!

 

 

 

Shock


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

Results

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.

Jaap

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.