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.
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.
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.
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
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).
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.
Next week I’m going to ASCO in Chicago, the annual meeting…
View original post 390 more words
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!
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.
+ 31 (0)6 54 913 912
Energy and persistance conquor all things
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.
Having trouble viewing this email? Click here
News from ASCO 2014:
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.
sheilaghosh by mbcn |
Metastatic Breast Cancer Network | P.O. Box 1449 | New York | NY | 10159
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.
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.
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.
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.
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:
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.
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.
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.
Sorry everyone, the “Hi” blog was a hack. DO NOT CLICK ON THE LINK!!
I’m running a bit late, need to pack my backpack and go to Schiphol to catch my plane to Philly. Till soon!
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.