My name is Kara Daniels, I live in Hopedale, MA and was diagnosed with Neuroendocrine/Carcinoid cancer six years ago, in September 2009.  I was very fortunate in being able to be diagnosed fairly quickly.

After being at a cookout on July 4, 2009, I developed severe diarrhea and abdominal pain within 24 hours.  It took me several days to call my doctor with my symptoms because, being a nurse, you don’t call your physician just because you have diarrhea.  After becoming very dehydrated, I resorted to calling my doctor and being seen.

Of course we both thought I had probably eaten something that may have gone bad at the cookout (you know the story – don’t leave potato salad out in the sun when it’s 90 degrees out) despite the fact that no one else who was at the cookout had become ill. I thought I had gastroenteritis and went on the BRAT diet and had some labs drawn testing me for celiac disease and being lactose intolerant.

My physician told me she didn’t want to do a ct scan at that time stating, “A ct scan is equal to 100 x-rays.”  I always laugh at that statement when I think of the 29 ct scans I have had since.  She told me to call her in a month if I was not better.

I waited three weeks and called her back.  Within those 3 weeks I ended up in the Emergency Room severely dehydrated and requiring several liters of IV fluids.  We resorted to the ct scan which, at that time, which showed multiple tumors in my pelvic area.

Initially, it was felt that I had ovarian cancer and I was referred to a Gynecologic Oncologist.  After several ultrasounds and being told that I had “totally stumped him with the findings,” he told me it was time for me to have a biopsy–which revealed carcinoid cancer with a primary site of what is believed to be my small bowel with metastasis to my pelvis, around my ovaries, outside my right lung, my abdominal wall and the top of my liver.  I had developed my “gastroenteritis” July 4 and had my carcinoid diagnosis by mid September.

As I look back, I did experience diarrhea and flushing before that but thought the flushing was due to my age (43 at the time of diagnosis) and didn’t think much of the diarrhea.

Fortunately I live only an hour away from Dana Farber Cancer Institute in Boston and was extremely lucky to have found Dr. Matthew Kulke.  I was immediately started on octreotide injections in October. However, by the following May, my ct scan had shown tumor progression.

At that time I started on a clinical trial of AMG 479.  I went in to Dana Farber every three weeks to see my team, receive my infusion of AMG and octreotide injection.  I was known as the poster girl for AMG until January of this year when I had more tumor progression, although small, but progression none the less and enough to take me off of the trial.

On to trial number two of cabozantinib.  Starting at the highest dose of 60 mg and working my way down to 20 mg, I was not able to tolerate the side effects which included decreased appetite, mouth sores, nausea, extreme fatigue, abnormal lab values, thinning hair, numbness in my hands and pain in my feet–making it difficult to walk at times.  Although the side effects were much less with the 20 mg, they still remained.  After much soul-searching and talking with my family and closest friends, I decided to stop the trial in July.

I have been feeling great until about a couple of weeks ago, when I had a small setback, but nothing that a week of rest didn’t help.  I have tried to not let this slow me down at all and have continued to work through all of this.

It has only been recently that I have come to realize that if I’m tired in the afternoon, it’s ok to rest for a bit.  In addition, I have one son, who is a high school senior, and we have been busy applying to colleges–so there’s never a dull moment.

As for my biggest frustration, well, I could list many, from the decreased awareness of NET’s, to people thinking there’s nothing wrong because you “look great,” trying to manage everything you eat and the timing of when you eat, to seeing people with other types of cancers having the entire community come to their rescue.  I have to honestly admit, it’s nice to watch the Patriots game today and not see a sea of pink on the television screen.

I have decided to stay off of treatment for now and take a wait and see approach.  My last MRI in October–yes, no more ct scans–did not show any tumor progression.  I know some may not agree with this approach, but it is more important to me to feel well, not struggle with side effects and have a great quality of life as I do now.

9:00 a.m.

Let’s go to London where that web chat with with Dr Christos Toumpanakis should be starting shortly.

I have to say I am very impressed with the information the chat is providing, especially to individual patients. If you are not following it, you should be. I’ll comment more fully on some of it later.

10:00 a.m.

The web chat has closed from the Royal Free. They will publish answers to any remaining questions later. You can still read the answers to the questions posed there.

Before we go any further, I should point out a site everyone needs too visit today: netcancerday.org. While you are there you can sign up to do a number of things both online and in the real world. And make sure you share their address on FB and twitter–and anywhere else you can think of.

You can also download a Zebra ribbon there for your FB or other social media accounts. I’d love to see lots of zebras everywhere I go today.

At the end of the eight o’clock hour, I posted Kara Daniels’ story. In it, she raised a couple of important issues, not least of which is the lack of understanding about not only NETs but many other forms of cancer that are ignored by the NFL and the general public in the massive pink wave that is October.

I mean no disrespect to those with other forms of cancer–but I truly understand Kara’s comment about watching football in October. This is especially true, however, when I go to the American Cancer Society and look for information about NETs. While a search for many cancers on their website will take you quickly to a page dedicated to that cancer, a search for NETs there will only leave you frustrated.

Please drop the ACS a note–or give them a call–today and ask them to address this problem with their website.

10:30 a.m.

On a more upbeat note, here is a great idea to raise some money for NCAN: do a virtual walk for NET cancer. Here is a link to their Facebook event page.  But I am putting the extended post for their event below:

Hope you’ll be joining our ‘Strides for Stripes’ Virtual Walk! Your participation makes life better for thousands of people who suffer from this disease.

The Virtual Walk- Since a virtual walk is one you can walk anywhere…anytime it is good for those who don’t have the time, aren’t close to a live event or can’t physically participate. Below is a guide that’s full of ideas to help you plan your own Virtual Walk (or another fundraising event) and help support the fight against Neuroendocrine Cancer.

Stride for Stripes Walks Fight Neuroendocrine Cancer

As a participant in one of the walks, you are raising money for programs that benefit neuroendocrine cancer patients and raising awareness of neuroendocrine cancer.

Here are things you may not know about this disease:

Carcinoid /NET cancers are known to affect over 125,000 patients in the United States.
12,000 people are diagnosed annually.
Initially, over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.
Average time from initial onset of symptoms to proper diagnosis exceeds five years.

You can fight neuroendocrine cancer- and be healthy and have fun doing it!

Get a Walk T-Shirt and other great prizes

Raise $35 and you get a cool Strides for Stripes T-shirt.

NOTE: TEE SHIRTS WILL BE AVAILABLE ON OR ABOUT OCTOBER 12TH. IN ORDER TO BE GUARANTEED A SHIRT, PLEASE SIGN UP BY OCTOBER 1ST. DUE TO THE HIGH COST OF SHIPPING, TEE SHIRTS WILL BE SHIPPED WITHIN THE CONTINENTAL UNITED STATES ONLY.

How to Create Your Walk Fundraising Page

Participating is easy and fun. There are two ways to participate:

1) Fundraise for the Walk on your own. By signing up as an individual, you can tell your personal story and family and friends can donate directly to your personal page.

2) Sign up as a team. By creating a team of friends, family and coworkers, each team member can create their own personal page, tell their story, upload pictures and fundraising individually as part of the greater team. You will also have a team pages where you can monitor the success of your team.

Put the Fun in Fundraising!

1. Set up your fundraising webpage

Creating your online fundraising page (personal page) is the fastest and easiest way to receive contributions. You can upload your address book and send everyone a personalized email asking for their support.

2. Tap into your social networks

If you’re on Facebook or Twitter, let friends and family near and far know you’ve joined the Virtual Walk and ask them to support you with a donation. Post periodic updates on your fundraising success to motivate them to get involved.

3. Walk in someone’s honor

Ask for donations to honor a friend, family member or co-worker who has been affected by neuroendocrine cancer

4. Celebrate

If a birthday, anniversary or holiday is coming up, ask family and friends to make a donation to support your participation in the Virtual Walk instead of a gift.

5. Conduct an in-person donation campaign

Go out of your way to meet with and talk to your closest friends and family explaining your reasons for walking and why you chose to support the Neuroendocrine Cancer Awareness Network. Making an effort to reach out on a personal level can mean a lot to your donors.

Take Action, Make a Difference

The power of your contribution…

The money you raise for your Walk will help the Neuroendocrine Cancer Awareness Network continue to provide programs and services essential to neuroendocrine cancer patients.

Here are some of the ways your contribution, large or small, makes a difference:

$15 provides supplies to a patient support group for a month

$25 supplies a comprehensive patient information packet to a neuroendocrine cancer patient, ensuring that the patient will be a good advocate for his/her care

$50 provides DVDs showing cutting edge information from a NET patient conference to a patient

$100 from 20 donors sends an expert to provide urgently needed information at a patient conference

$200 keeps the patient hotline open for a month

$500 sponsors a patient to attend a regional patient conference

$1,000 sponsors a doctor to learn more about neuroendocrine cancer and earn CME credits

$2,000 starts the ball rolling toward funding a research grant

Virtual Walk Guide: Fun Ideas for Your Virtual Walk

VIRTUAL WALKERS- Create your own community fundraising event. Plan a walk or fundraising event in your community. You can plan a walk or another type of event like a wine tasting or a bowl-a-thon. By registering as a community event on the website, your team page would be about your event specifically. Those individuals that choose to join your “team” can fundraise on the website. You can watch the progress of your event and send emails to your contact list encouraging their participation and support.

You may choose to walk around your community, in a local park, indoors at a mall or even on a treadmill at a gym! Your Virtual Walk is a reflection of you, and is as personal as your reasons for joining the fight against this deadly disease.

Be creative! Whether you walk alone, with a friend, or form a team, you’ll be keeping important programs like these available to neuroendocrine cancer patients:

Patient Hotline
Patient Conferences
Information Packets
Support Group Assistance
Funding Research
Awareness Items
Information on Diagnosis and Treatment on our Website & Social Media

Not sure where to start? Here are a few ideas.

Walk in a mall
Take a walking tour of your town
Make your grocery shopping or another shopping trip YOUR walk to fight neuroendocrine cancer
Belong to a gym? Walk a treadmill, and enlist other members to walk with you
Even if you can’t walk, get people involved with a board game, bus trip, beanbag toss- you can be as creative as you want!

Send us a picture. And don’t forget—because this walk is virtual, your team members can be anywhere in the U.S. (Outside the US, please email bob@netcancerawareness.org for more details.)

I think this is a great idea and think that it can serve as a template for other groups to do something similar to support their regional NET cancer center. We’ll come back to the need to support those centers later today.

While the primary focus of this Social Mediathon today is not about raising money, if your NET cancer group has a fundraiser you’d like us to promote today, pass along the information at walkingwithjane@gmail.com and I’ll make sure it finds a place here and on our walkingwithjane.org calendar page.

10:45 a.m.

For Walking with Jane, today is about sharing stories and information. But this seems like a good time to talk about what we’ve been able to do this year financially to help the cause.

The vast majority of the money we raise never passes through our hands here. Instead, it goes directly to the Boston Marathon Jimmy Fund Walk team I captain. This year, we changed the team name to the NETwalkers Alliance because the name better reflected all the different parts of the effort. We’ve tried to gather all the individuals and teams who walk to honor or remember someone with NETs under one big tent with all the money going to NET research at Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors.

That team raised a total of $67,701. While $30,000 of that is attached to my name, I didn’t raise all of that by a long shot. Gail Silvia organized a dinner that raised $3000, others carried the weight for our Walking with Jane Miniature Golf Open. Friends helped stuff envelopes for two other fundraisers.

The biggest single fundraiser by any team member was the Hank Landers Memorial Golf Tournament run by his daughter, Jenaleigh. It pulled in close to $8000. We had nine people raise more than $1500 on a team with 33 members.

Of course we’d hoped for more. Our goal was a team with 60 walkers that would raise $80,000. Next year, we’ll get there.

In addition, The Walking with Jane Fund for NET Cancer at DFCI will finish its commitment to raise $100,000 over five years at the end of December. I plan to continue that commitment over the next five years in a similar amount. That money goes directly to that fund as well, without seeing the inside of the Walking with Jane bank account.

We also handed out $5500 in scholarships this year to undergraduates planning to enter medicine or science teaching when they finish their degrees. Most of that money goes to graduates of the school Jane and I taught at, but one scholarship goes to a student at Jane’s alma mater, Bridgewater State University.

We also had a Walking with Jane team at this year’s Relay for Life of Greater Fall River. That team raised about $7500 which will go largely to patient support services.

I’ve earmarked another $5000 between now and the end of December for Caring for Carcinoid–which is now the NET Research Foundation–and Carcinoid Cancer Foundation. We’ll talk about both of those groups later in the day.

11:15 a.m.

But first, we need to return to the discussion we started earlier about NET cancer basics. We haven’t talked at all about the prognosis for patients beyond saying that there is no cure save early surgery. But that doesn’t mean people can’t live for a significant amount of time with a good quality of life. Prognosis currently depends as much on the stage of the disease and something called tumor grade.

Ronny Allen is a patient who blogs on NET cancer in language lay people can understand. About a month ago, he took on both those issues. His explanation is about as good as I’ve seen. You should read it now.

11:30 a.m.

As I said, Ronny doesn’t just write about NET cancer–he is also a patient, and is actively involved in England, and around the world on NET cancer issues. Here is his profile.

What is your name? – Ronny Allan

Where are you living? UK (England)

Describe how you found out you had NETs. What problems did you have getting the right diagnosis?  

After a routine set of regular bloods, I was diagnosed by my GP/PCP) with Iron Deficiency Anemia and referred to a specialist (quite low hemoglobin).  The specialist was immediately suspicious and bypassed a colonoscopy and sent me for a CT scan which highlighted numerous tumours in the GI tract including the liver.  I was eventually diagnosed with Metastatic NETs (small intestine).  I was one of the lucky ones, although I did have a colonoscopy (negative) 18 months prior due to an temporary episode of a darkening stool.

When were you diagnosed? July 2010.

What problems does your NET cancer create for you? What is your typical day like dealing with NETs?

 I am pretty stable and am bothered mainly by a compromised digestive system which I mostly address via diet and supplements. I can get tired easily and I have taken early retirement to focus on my health.

What treatments have you had? Did they work for you? What kinds of side effects have you experienced from treatment? 

I have had 2 large surgeries (1.  terminal ileum, right hemicolectomy, mesentery tidy up plus removal of retroperitoneal fibrosis.  2.  Liver resection.  Two smaller surgeries – 1.  Left axillary lymph nodes x 9.  2.  Left clavicle lymph nodes x 5.  Plus several others issues – you can read all of this is more detail here:  http://wp.me/P4AplF-PQ. 

I’m stabilized on Lanreotide every 28 days.  I think the early and speedy treatment I received is why I am in good shape today and look well (!).  In addition to me giving up work (4 years after diagnosis), the consequences of my cancer and treatment are that my digestive system is compromised, my general immune system is less efficient so I need to be careful with other illnesses which might have a worse effect than they would with a regular guy. 

I had lung blood clots early on and have been treated with blood thinners since – this is a minor inconvenience although I’d rather not have it.  I have mild lymphedema in my left hand as a result of left axillary surgery (9 lymph nodes removed).  I have a (currently) benign lesion on my thyroid. 

Living with the knowledge of all these side effects and the potential for new problems to come along is not easy.

11:45 a.m.

I don’t know much about Paraganglioma Jugulare beyond that it is one of the rarest forms of NETs. Sandra Louise Murray responded to my request that she write something about her experience with it. This is what she wrote:

I was diagnosed with an inoperable Paraganglioma Jugulare ( Skull based brain tumor) Aug 2013. My symptoms had started noticeably that June when I developed severe tinnitus, severe headaches, and uncontrollable night sweats.

I had already been experiencing episodes of unexplainable “Flushing” and high blood pressure for many years. Late July, I had a very severe episode of prolonged vomiting while working an international flight from Istanbul to JFK. (I am an international flight attendant currently on disability while I fight this disease). The vomiting was so violent that I pulled and permanently damaged my iliopsoas muscle and also caused a hernia.

An MRI diagnosed me with a subdural hematoma, cerebral spinal fluid leak, a cervical spine tumor and the inoperable Paraganglioma.

Pheochromocytoma and Paraganglioma are NET cancers.

This NET cancer is very rare…only about one in one million people will develop this cancer.

My tumor is radiation and chemo resistant…..thus making treatment most challenging. And, of course, very few doctors have any experience with this disease, making recovery even more challenging. I struggle daily with the tinnitus, headaches and night sweats. Getting a decent night sleep is impossible.

I am very fortunate to be in a Pheochromocytoma and Paraganglioma protocol at The National Institutes of Health in Bethesda, Md. headed by Dr Karel Pacak. Dr Pacak has dedicated his life to finding a cure for this NET cancer. I go to the NIH for regular screening. They have types of PET and CT and other nuclear medicine scans for diagnosing and treating this disease that are not available any other place in the world.

I have been accepted at Massachusetts General Hospital in Boston to start 6 weeks of Proton Beam radiation treatment. I, also, have been accepted at the Mayo Clinic in Rochester, Minnesota for Gamma Knife radio surgery. I have not yet decided which treatment has the least likely chance of collateral damage to the cranial nerves and brain.

Today I will hope for better worldwide NET Cancer Awareness and I pray that all of us who suffer with NET cancer will one day find a cure. God Bless all Zebras…..and all cancer patients worldwide.

Noon

Dr. Eric Liu, a surgeon who specializes in NETs, has made a number of media and social media appearances today. While many of these have passed, you may be able to access them via the stations websites or FB pages.

Friends happy NETs day!

If you are interested and have time, I’m going to spread the word through media today.

Get out there and make sure people know who we are!

1:45 p.m.

The beginning of the end began 12 months ago today.

It began quietly enough. We got up early and made the drive to Dana-Farber. The traffic was better than usual because of the Veteran’s Day Holiday.  But Jane had had more difficulty getting down the stairs at home. Her legs were often swollen with fluid, but the last couple of days the fluid had begun to build up in her arms again. Her albumin levels, we would learn later that day, were crashing. One of the things albumin does is keep the liquids in the cells where it belongs. Our last appointment of the day was with a nutritionist who was going to help design a diet to boost those levels–and hopefully reduce the swelling.

We had the regular blood draw, then went to see Jen Chan, Jane’s oncologist. We were all concerned about the build up of fluids in Jane’s belly and talked about doing a procedure on Monday to try to draw off some of the fluid. We went to see Javid Moslehi, Jane’s cardio-oncologist. The walk to his office was exhausting and we stopped at a bench about half way there so Jane could catch her breath. I had offered to push her in a wheelchair but she had made very clear she wasn’t going there.  Javid was worried about the fluid build-up as well.

We made the trek back to Dana-Farber to have her monthly injection and meet with the nutritionist. The injection was a simple shot in the buttocks. Then we met the nutritionist. She talked about the need to consume more protien. Jane discovered Greek yogurt was full of the stuff–and she loved Greek yogurt.

When the woman left, we were ready to go home. Then Jane stood up. Her pants were soaked through. She was leaking fluid from the injection site. I wanted to get someone to look at what was going on, but she looked at me with those big brown eyes full of pleading: “I just want to go home,” she said. “Please, just take me home.”

Another man might have done something else. For a time after her death I was angry with myself for not being more insistent, thinking that if we had stayed things might have been different. I have since figured out that it was already too late–that there was really nothing I could have done that would have saved her–and that taking her home meant she got one more weekend in the home that she loved–gave us time to say the private good-byes while she could still talk.

The drive home was awful. The traffic was stop and go from Brockton to Taunton. I had to help her out of the car when we got home and carry her up the stairs.

This morning I had trouble getting out of bed. I cried a bit, railed against the injustice of it all, got angry about all the things that made her death inevitable.

And resolved again to find a way to kill this foul disease.

2:00 p.m.

I am still coming to terms with the last days of Jane’s life. On the tenth day of each month I write a piece about her death and the current state of my grief. This month’s piece follows, but I will also post it as a separate piece on the site. It speaks to a significant part of what it means to be a caregiver–the need to keep hope alive in the darkest of times.

Keeping hope alive

Grades closed for the first quarter at my high school five years ago today. I was supposed to finish grading some papers by Friday so I could post them on the computer before report cards were printed and sent out. But I also knew Jane and I were headed to Boston the next morning for another meeting with Jen Chan, her oncologist at Dana-Farber. I was worried about that appointment in ways I hadn’t been before.

…Jane’s body died and took part of my soul with it

Jane’s legs and abdomen were more swollen than they had been just two weeks before. She had stopped going to the basement entirely and the previous weekend had sent me out alone to do the grocery shopping. Neither the long-term Sandostatin nor the multiple daily octreotide injections seemed to be doing much good. But I worked hard not to let her see I was worried. I wanted her to stay optimistic.

Anger explodes

I know now that Jane was equally concerned. She had seen our neighbors a few weeks before–just prior to their departure for Florida for the winter. She’d told them she didn’t expect to be here when they came back. She felt, I think, that she needed to stay positive for me the same way I felt that for her.

I was worried…

I’d spent the previous weekend buttoning up the gardens around the house and giving the lawn a final mowing. As I carried a pile of brush to the composter, my foot went through the sod into a sinkhole. I lost my mind for a few seconds. It made me insanely angry and I let all the pent-up anger and frustration of the last several months boil out of me in a primal scream.

Explaining anger

The anger hadn’t entirely dissipated by the time I came back in. My voice was still strongly tinged with anger when I told Jane what had happened. “Why are you more angry at this than you ever are about my cancer?” she asked. Her own voice was tinged with anger and hurt.

 I lost my mind for a few seconds.

So I told her. I was calm about it–completely rational. I told her I was absolutely furious about her cancer–and I was. But I didn’t dare let that anger and hurt and frustration out. I had to stay calm because I had to be able to hear what her doctors were saying to us and understand it. I needed to be able to listen critically to what they told us so that I could ask the questions whose answers terrified us but that we needed to hear.

Caregiver anger

And I told her I was terrified that if I let that anger out some of it would splash over on her. She hurt badly enough, I said. I didn’t want to add to that hurt. “I hate this cancer,” I said. “I hate what it does to you. I hate that it makes you angry–hate that the anger gets directed at me sometimes. But when you get angry with me I remind myself that most of the time it is the cancer talking–and not you–and that if I let myself get angry back it isn’t going to help anything.”

I was absolutely furious about her cancer…

I’d watched her get ready to give herself an injection every morning for months. I’d watched her prep the hypodermic, draw out the fluid, cleanse her belly with alcohol swabs, then push the needle into her body and press down on the plunger. I’d watched her go through the same procedure every night, knowing that earlier in the day she had done the same thing when I was not around.

Bargaining in anger

I could see the marks the injections had left on her stomach. I knew there were ways I could not touch her without causing her pain–even a hug could be too much. And I could see how little good those injections seemed to be. It hurt me in my soul to see all that and know all I could do was hold her hand and smile and whisper constant encouragement.

She hurt badly enough…

There were times, when I was alone, that I looked at the heavens and said, “If you’re going to take her, do it quickly and be done with it.” I felt guilty every time I said that–truth be told, I still do. It’s a horrible thing to wish for the death of someone you love. It feels like the worst kind of betrayal no matter how much it may seem like the merciful thing to do.

Changing the landscape

We didn’t know, as we got into bed that night, that Jane had just a month left to live. We didn’t know that we would sleep in the same bed just three more times. She was, however, smart enough to make sure we said our good-byes that weekend after her heart surgery was set for the following Monday. She told me she fully expected to come home again–that she would not die from this surgery or its aftermath–but just in case…

It feels like the worst kind of betrayal…

A lot has happened in the 59 months since Jane died in my arms. The landscape of NET cancer has changed in some significant ways. Most of it has nothing to do with Jane’s death or my actions since then. Most of it was already in the pipeline. I’m not sure anything major changes in treatment or research if I had just curled up in a ball around my grief and disappeared.

What I might have done

Part of me wishes I had done just that. Perhaps then I would not still find myself wandering the house–moving from room to room aimlessly and watching hours vanish with no idea where they have gone. Perhaps then I would not have a dozen projects lying around me half-finished. Perhaps then I would have done what Jane asked me to do in that long Saturday conversation where we said good-bye.

The landscape of NET cancer has changed…

She told me she loved me; that she wanted me to find joy in life again, wanted me to fall in love again; that she fully expected me to go on with my life. Instead I dream of her last months and of trying to find her when we get separated in a store or in the woods. I dream she is lying next to me–and then wake up to find my arms wrapped around a pillow.

What we did and what I do

Every day, I get up. I eat breakfast. I read the newspaper. I craft a list of things I need to do.

Then I sit down and try to do the one thing I know really makes a difference: work to bring hope to patients and caregivers. Some days it’s comforting patients; some days it’s trying to figure out how to explain the latest bit of science; some days it’s helping caregivers understand what they are feeling is normal; some days it’s helping those who mourn find ways to cope; some days it’s trying to figure out how to raise a few more dollars for research; some days it’s about trying to build structures that will help people when I can’t do this any more.

…I dream of her last months…

Fifty-nine months ago today, Jane’s body died and took part of my soul with it. Fifty-nine months ago today, I stopped being Jane’s caregiver and returned to the work we had always done together: trying to help those who needed what we had to give.

2:30 p.m.

Jenaleigh Landers lost her father to NET cancer 29 months ago yesterday. Today, she offers this remembrance.

Today is Neuroendocrine (NET) Cancer Awareness Day. NET tumors is the umbrella term for a group of unusual cancers which develop from cells in the diffuse endocrine system.
⠀
For those of you who don’t know me/my story as well, NET Cancer is what took my dad from me June 9, 2013. It is an extremely rare disease, but is becoming a lot more common, unfortunately. It is often misdiagnosed for IBS, Crohn’s disease, peptic ulcer disease, gastritis, other digestive disorders, asthma or pneumonia, and by the time NET tumors are uncovered, it is likely that the cancer has spread to other areas—in my dad’s case all throughout the bones in his body. For him, he experienced excruciating back pain, which he thought was due to traveling for work.

NET Cancer does not discriminate… it can affect people of any age, and can be slow-growing or very aggressive. It takes fathers, mothers, husbands, wives, aunts, uncles, sons, daughters, children, grandparents…
⠀
It is the scariest thing I have had to watch someone go through. My dad’s courage was something I admire every single day.
⠀
There’s not a day that goes by that I don’t think of my dad in some way… his last words… last moments… last wishes… all the memories we made together… our plans… what he would think if he saw my brothers and I now.
⠀
The pain comes and goes in waves, and truthfully, I will never be the same. However, his death has shaped me into the person that I am today. I never thought I could deal with such a loss and eventually learn to share the “good” as a result. I miss you every day, Dad, and I will continue to fight your fight for you. Maybe this is WHY you were blessed with such a stubborn and determined daughter.

2:45 p.m.

The bravest people I know are cancer patients–especially those for whom we have no cures. They volunteer for trials, knowing they may just be getting a placebo or the standard treatment; they get out of bed every day and do battle with their disease; they poke needles into their bodies; and so many of them smile as they face things I have a hard time imagining. They are like soldiers going into battle with no weapons other than a positive attitude against a foe who is armed with every advantage possible–but they go anyway.

But there is also a special bravery in the caregivers who walk into that battle with them. When I chaired the local Relay for Life, we made a special lap for the caregivers. It was the final lap of the year. Very few people were there for it. Most people had already packed up and gone home. But it was the perfect symbol for what happens to many caregivers. Their loved one dies, but they have to go on walking–and they often end up walking alone.

If you’d like to add your caregiver story here–or share your experience with grief–I’ll continue to post those stories here until midnight tonight. Just send them to walkingwithjane@gmail.com.

3:00 p.m.

How brave are NET cancer patients? Here are links to two stories that blow even my mind. The first is by my friend Danica, who lives in California. She’s had to have a feeding tube put in–but I’ll let her tell it. Danica’s blog posts will break your heart.

The second story is written by a doctor in Texas. How many liver operations would you take on? Lobster Man probably holds the record.

3:30

Jennifer Chan, who was Jane’s oncologist, and I collaborated four years ago on a pamphlet aimed at patients who were suffering from Irritable Bowel Syndrome to warn them about the possibility that their IBS might really be NET cancer. We’ve revised it periodically since.

What follows is the draft of the next version of that pamphlet. If you know someone with IBS, please share it with them. Do it today.

Is it IBS? Or is it NET cancer?

Irritable bowel syndrome is a common diagnosis for people who are experiencing pain and bloating in the stomach and intestines. It is often caused by eating particular foods or by stress. Avoiding those foods or reducing stress often eliminates the symptoms of IBS.

But there is another disease with almost identical symptoms that sometimes seems to respond to those same treatments: neuroendocrine tumor cancer — NET for short. And unlike IBS, it can progress into something deadly: carcinoid syndrome.

Symptoms:

If you have had:

▪    severe bloating of the stomach or intestines

▪    diarrhea that lasts more than a few days or that recurs frequently

▪    sudden, unexplained weight loss

▪    loss of appetite

▪    frequent insomnia

▪    frequent flushing or hot flashes (a sudden, brief reddening of the body that feels warm)

▪    frequent wheezing

▪    low blood pressure

▪    sudden onset of high blood pressure

▪    redness or swelling of the tongue or mouth

You may have NET.

What is NET?

NET is a relatively rare form of cancer that often starts in the small intestine, appendix, pancreas, and lung. It has also been found in many other places in the body. Truthfully, the tumors can form just about anywhere.

But unlike a normal cancer that can grow very rapidly, NET typically grows very slowly, at about the same rate as the cells in the rest of your body. This slow growth rate may be one of the reasons traditional forms of chemo and radiation therapies don’t work very well on this disease.

Also, unlike most normal tumors, NET tumors take an active role in the body’s chemistry. A neuroendocrine tumor can produce nearly any hormone or peptide the organs in the body can produce. The hormone most often produced is serotonin, but it can also produce adrenaline, insulin or any of a wide variety of peptides or other hormones.

And those extra hormones can produce any of a number of medical problems, ranging from insomnia to heart disease and eventual heart failure.

What should you do?

If you think you have IBS, and/or two or more of the symptoms above, a blood test for chromogranin A, a 24-hour 5-HIAA urine test, and a CT scan may be able to uncover the disease at an early stage. A special kind of nuclear medicine  scan called an Octreoscan may also be available in some areas and can be helpful in some cases for localizing neuroendocrine tumors. A Gallium-68 DOTATOC PET/CT scan is a newer nuclear medicine scan available in some locations for the evaluation of NET tumors.

In many cases, if caught at an early stage, surgery can solve the problem before it spreads and does serious damage to other organs. But the tests are not foolproof. There is currently no way to detect this cancer early with certainty.

Still, for this cancer, early detection and treatment is really the only cure.

This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.

3:45 p.m.

This is a truly comprehensive podcast about the PRRT trials I talked about earlier today. It is pretty exciting stuff–even if its length may seem daunting.

4:30

Each year, I ask Jen Chan a series of questions about NETs and the state of the research. I’d planned to post this interview earlier–right after Ronny Allen’s piece on grading and staging of tumors. But as frequently happens on these Mediathons, I get side-tracked by comments and my own thinking. In any event, here is the interview.

• What is NET Cancer? How is it different from other cancers?

Neuroendocrine tumors are a relatively rare and diverse form of cancer that arise from neuroendocrine cells that are located in multiple sites of the body, including the gastrointestinal tract, lung, and other organs. They are characterized by variable but often indolent (or slow-growing) behavior.

One important factor that can affect prognosis is tumor grade. Grade is an assessment of the tumor that takes into account markers of cell proliferation seen by the pathologist on a biopsy. Tumors can be categorized as low, intermediate, or high grade. Low-grade tumors are slow-growing, whereas high-grade tumors are faster-growing.

Neuroendocrine tumors are unique because of their ability to secrete hormones. Most neuroendocrine tumors are non-functional tumors, which means that they are not associated with symptoms from hormone secretion. However, some neuroendocrine tumors (10-30%) produce hormones. Symptoms that a patient experiences will depend on which hormone is produced.

• Neuroendocrine tumors, particularly ones that start in the small intestine or appendix, can produce hormones such as serotonin, which leads to symptoms including flushing or diarrhea. These symptoms are referred to as carcinoid syndrome.
• Some pancreatic neuroendocrine tumors can also produce a variety of hormones such as gastrin, insulin, glucagon, vasoactive intestinal peptide, somatostatin, and ACTH.

• Why is it hard to diagnose? What symptoms should serve as red flags for patients and primary care physicians?

Neuroendocrine tumors can be difficult to diagnose because many of the symptoms are non-specific and can be associated with many non-cancerous conditions. Because neuroendocrine tumors are relatively rare, a diagnosis of neuroendocrine tumor may not be considered.

Neuroendocrine tumors are also hard to diagnose because there is not a widely available screening test, such as mammogram for breast cancer or PSA blood test for prostate cancer.

Symptoms that should lead to consideration of a diagnosis of neuroendocrine tumor include unexplained flushing or diarrhea or unexplained symptoms that are associated with hormone-producing neuroendocrine tumors. Many patients may not have hormone-producing NETs; these tumors are often diagnosed during the evaluation of symptoms, including pain, related to the tumor.

Some patients with carcinoid syndrome can develop carcinoid heart disease. The heart valves, primarily those on the right side of the heart, can become thickened and work less well due to exposure to hormones such as serotonin. Heart failure can develop when the heart valves do not work well, and patients can experience leg swelling, shortness of breath, fatigue.

• What is the standard treatment for the disease when it is discovered early? What is the prognosis when it is caught early?

When neuroendocrine tumors are diagnosed at an early stage before spread has occurred, standard management includes surgery. For neuroendocrine tumors that are completely removed with surgery, the prognosis is good, and the surgery is often curative. Some smaller tumors can be removed with endoscopic techniques.

• What is the standard treatment for the disease when it is not discovered early? What is the prognosis when it is caught late?

When disease is more advanced, the treatment approach is individualized to each patient and depends on many factors such as tumor grade and extent of disease, organ where the disease started, symptoms related to disease, and how much growth has occurred.

Prognosis will also vary from person to person and depends on factors related to the grade and biology of disease, extent of disease, and the health of each patient. Many patients with advanced low to intermediate-grade disease can live many years.

Regarding treatment options for patients with low to intermediate grade disease:

Treatment options can include systemic therapy, which is treatment that can reach and affect the whole body, or therapy that is directed specifically to where the tumors is located. Systemic therapy can be administered in a variety of ways, such as pills by mouth or injections given intravenously, intramuscularly, or under the skin.

For some patients, surgery to remove all or most sites of disease can be considered.

If surgery is not an option and there is limited disease without any disease-related symptoms, some patients may be candidates for close observation. This is the case since some patients with low-grade disease may have very slow growing disease that may not grow significantly for some time. Treatment can be started at the time of progression or development of symptoms.

For patients with symptoms related to hormone production, somatostatin analogs can help symptoms by reducing hormone production. The medications octreotide and lanreotide are examples of somatostatin analogs.

In addition to reducing hormone production, somatostatin analogs also have been shown to slow growth of advanced gastrointestinal and pancreatic neuroendocrine tumors. Somatostatin analogs are commonly used as an initial therapy for patients with advanced neuroendocrine tumors.

For patients with advanced pancreatic neuroendocrine tumors, systemic treatment options also include everolimus, sunitinib, and chemotherapy. Everolimus and sunitinib are two oral targeted therapies approved by the FDA for patients with advanced pancreatic NET; both have been shown to slow growth in pancreatic NET. Pancreatic NETs can also be sensitive to chemotherapy. Temozolomide and streptozocin are examples of chemotherapy drugs that are active against pancreatic NET.

For patients with predominantly liver metastases, treatment directed at the liver can be considered. Hepatic (liver)-directed therapies include surgery, hepatic artery embolization, or ablation.

We continue to study new therapies for patients with neuroendocrine tumors. Clinical trials investigating new therapies may be an option for some patients with advanced disease.

For patients with advanced high-grade, poorly differentiated neuroendocrine carcinomas, platinum-based chemotherapy is often used.

• As the disease progresses, what kinds of things do patients experience, physically and mentally?

For some patients, there are no symptoms even when CT scans or MRIs show tumor growth.

For some patients, however, there may be development of symptoms such as fatigue, loss of appetite, weight loss, or pain. Some patients may experience an increase in hormone-related symptoms if there is an increase in hormone production that correlates with disease progression.

Disease progression can also be emotionally challenging. Depression might occur. Patients benefit from the support of family, friends and their health care team. The health care team can consist of many individuals, including oncologists, nurses, social workers, psychiatrists and therapists, and nutritionists.

• What is the greatest challenge we face in dealing with this disease? From a patient standpoint? From a medical standpoint?

From a patient standpoint, it can be challenging to find a team of health care providers with knowledge and expertise in managing NET. A multidisciplinary approach is critical to the care of patients NET since NETs are a diverse group of tumors, and our approach needs to be individualized. Depending on the situation, there may be a role for surgery, interventional radiology or nuclear medicine techniques, or medical therapy. When to start and how to sequence therapy may also need to be decided. These are complicated issues, and it is helpful to have multiple people thinking together about each patient.

From a medical standpoint, education and raising awareness about NET remains extremely important. With early diagnosis and intervention, we can hopefully cure more patients and improve outcomes. It is also critical that we expand our treatment options for patients with advanced disease. Compared to many years ago, patients with NET are now living much longer. However, we still need better treatments to control disease and help with symptoms related to disease so that patients can live long, productive lives with good quality of life.

• How have things changed with NETs over the last year? What do we know now that we didn’t know then? How has that knowledge changed what you are doing both with patients and in the lab?

In September 2015, the results of three large randomized placebo-controlled trials related to neuroendocrine tumors were announced.  All three had positive results that are practice changing and will expand possible treatment options for patients with NET.

1) The TELESTAR study was a randomized study of telotristat etiprate, an oral agent that blocks the activity of tryptophan hydroxylase – the rate limiting step in the synthesis of serotonin.  Telotristat was associated with reduction in bowel movement frequency in patients with uncontrolled diarrhea despite standard doses of octreotide.  24-hour urine 5-HIAA levels were lower in patients receiving telotristat – indicating effective inhibition of tryptophan hydroxylase and reduction in serotonin production due to this agent.

2) The RADIANT-4 study demonstrated improved progression-free survival with everolimus in patients with advanced non-functional NET of lung and GI origin.

3) The NETTER-1 study demonstrated improved progression-free survival with the radiolabeled somatostatin analog 177-Lu-Dotatate in patients with progressive mid-gut neuroendocrine tumors.

The results of the RADIANT-4 study and NETTER-1 study are particularly exciting and promising because historically, patients with advanced non-pancreatic neuroendocrine tumors have had limited systemic treatment options.  Both of these studies show that growth can, in fact, be slowed and will expand possible treatment options for patients with NET.

• There’s been a lot of talk about immunotherapy this year–and one foundation just made a grant to some researchers to look at using it in NET cancer. Can you explain what immunotherapy is? Is there cause for optimism about its use in carcinoid/NETs?

Immunotherapy is treatment designed to enhance the immune system’s ability to recognize and attack cancer cells. The outcomes of patients with some forms of cancer, such as melanoma, have improved dramatically through the use of immunotherapy.

Given the favorable results and advances that have been seen in other tumor types, it is important for us to understand the immune characteristics of neuroendocrine tumor cells and to investigate the role of immunotherapy in the treatment of NETs.

• What is the most promising thing you see on the near horizon?

Several large clinical trials investing novel treatment approaches have recently been completed. We are awaiting the results of these studies, all of which have the potential to influence treatment options for patients in the future.

Recent translational research has also provided new insight into the biology of neuroendocrine tumors. For example, a recent gene sequencing study suggests that dysregulation of the cell cycle may be important in the etiology of small bowel NET. As we understand more about the factors that drive the development and growth of neuroendocrine tumors, we hopefully will be able to find new targets for therapy.

Additional research also needs to be done to better understand why some people do and do not respond to certain therapies. Results from this investigation may help us to select the most appropriate therapy for each individual patient.

4:45 p.m.

The Carcinoid Cancer Foundation is doing a live chat on Twitter that I just remembered was there. Follow the #NETCancerChat to see what is going on there.

I’ve been running as hard as I can with my head down all day. We’ve posted over 15,000 words–not counting the posts we’ve sent people to since 6 a.m, this morning. I just went out for a few minutes, figuratively speaking, to check on what else is going on in the social media universe having to do with NETs.

It’s a jungle out there. More than half the posts on my regular Facebook page are about NETs–and while I’m not seeing as many Zebra-themed profile pics as I’d like, the content of posts is certainly making up for that.

I have more patient profiles to post, some bits on the NET Research Foundation and the Carcinoid Cancer Foundation, a couple more videos to share, and one major announcement about a new project I am holding of on until prime-time. Do people have suggestions about where they’d like to go next? What other kinds of things they’d like to see? You can comment here or drop a line to walkingwithjane@gmail.com. A PM would work as well.

What’s your pleasure, folks?

5:oo p.m.

Linda’s story of her diagnosis is too familiar to anyone who has been around this disease very long.

What is your name? Linda

Where are you living? Cincinnati, OH, USA

Describe how you found out you had NETs.

I had Multiple Pulmonary Embolisms in April 2008. The next month, and several more times that year, I made additional trips to the ER because I was short of breath. I was told at each of those visits that I did not have any more embolisms and was treated for Asthma.

I was 54 years old that year and had never been diagnosed with Asthma. Also, I had never been short of breath like that. In December, after yet another ER visit, I was told that I had lung nodules. They had been seen on my first chest CT in April 2008 and was finally given a referral to a pulmonologist.

The pulmonologist was not worried about the nodules because they were small. Also, not many doctors in this area have met anyone with Lung Neuroendocrine tumors. Current protocol has been that there must either be persistent growth on two sequential CT Scans or the nodule is greater than 1cm (10mm). As my CT Scans were just a few weeks apart and my nodules were initially 5mm and 8mm, they were not considered to be of any consequence.

What problems did you have getting the right diagnosis?

After three years of waiting for someone to figure out why I suddenly had asthma, I started researching the possibilities in PubMed. As a U.S. military and college trained Information Technology person, my first thought was to do a spreadsheet of all the CT Scans that had been done. Eureka! There was the answer. Very, very slow but steady growth that appeared to follow the guidelines for Neuroendocrine Cancer.

I then contacted yet another pulmonologist who, very excitedly, agreed that my spreadsheet did, indeed, indicate that there was growth. Further testing concluded that I had Atypical Cells with Neuroendocrine Features and so the first VATS was scheduled.

When were you diagnosed? November 2012

What problems does your NET cancer create for you?

I still have pain from the first surgery that has slowed me down quite a bit because it is not very well controlled. I am on Gabapentin. I have also been using either an Ace Bandage or a heat wrap designed for lower back pain wrapped around the lower part of my lungs on that side.

What is your typical day like dealing with NETs?

I try to do as much as I can as quickly as I can because I know that when the pain kicks in, I will not be able to do any more. The pain takes my breath away and also wears me out. Unfortunately, this is not the only health issue I have. It does make it complicated for the doctors to treat me.

What treatments have you had?

I have had two surgeries to remove three tumors in my lungs. The first one was in November 2012 for a Left Upper Lobe Wedge Resection via VATS to remove two tumors that were 7mm each. The other surgery was this past March to remove my Right Middle Lobe to remove the 1.4mm tumor there. The tumors are not considered metastatic because they were all seen on the initial chest CT scan in April 2008 and were small. So, I have been diagnosed as being Multi-Focal or Multi-Synchronous.

Did they work for you?

I am currently considered to be NED (No Evidence of Disease). There has never been any sign of anything other than the three tumors that were removed. I am somewhat lucky compared to so many others because these tumors were found accidentally and while they were quite small.

What kinds of side effects have you experienced from treatment?

The only bad side effect has been the pain. The big benefit is that I am only short of breath when I try to push through the pain. The Asthma is completely gone. In fact, it has since been diagnosed as Carcinoid-induced Asthma.

How does where you live affect your ability to get treated for NET cancer?

I am near Markey Cancer Center at the University of Kentucky where there is a Neuroendocrine Cancer Team.  http://ukhealthcare.uky.edu/markey/neuroendocrine/  I have been seeing Dr. Edward Wolin this past year, but he is moving to New York and so my care will be transferred to Dr. Lowell Anthony. Prior to this, I had seen Dr. Eric Liu one time at Vanderbilt University, but he is now in Denver, CO. So, I have been very lucky to have been and continue to be seen by NET Specialists since my first surgery. Unfortunately, there is not a Neuroendocrine Cancer Team here in Cincinnati with the experience that these physicians have.

What is your biggest frustration?

My care is spread between my doctors here in Cincinnati and in Lexington. Since I have multiple health issues, I see a pulmonologist, an endocrinologist, a gastroenterologist, a neurologist and my primary care doctor here. I see the thoracic surgeon and the NET Specialist in Lexington. This means that I have to carry copies of my records between the different doctors. It also means that there really isn’t much communication between here and there. However, I know that I am very lucky to be able have the benefit of the experience of the NET Specialists that I have seen.

5:15 p.m.

Some pure, blue-sky speculation follows. This is probably a stupid question, but then only stupid people don’y ask stupid questions.

Something has been bothering me for a long time that this story reminds me of. Many NET patients have more than one serious illness going on–and some have several. My mother-in-law died of pulmonary fibrosis, a supposedly rare disease. Yet I know several NET patients who have pulmonary fibrosis. And I know more than one NETpatient with MS.

That seems peculiar to me. It may be coincidental, of course. I haven’t done the statistics to tell me how probable either case is–I’m not sure my math skills are up to the task in any event. And no one would listen to me if I did the statistics–I am, after all, an English major. But maybe someone should think about this.

5:45 p.m.

The Caring for Carcinoid Foundation has a new name this year and a new website. They’ve always been very professional in their approach from what I’ve seen. Their new logo and website design underline that professional vision. They are now the Neuroendocrine Tumor Research Foundation–or the NET Research Foundation for short.

They are currently funding the trial of an immunotherapy drug for NET patients. It is an expensive, but important undertaking.

Ron Hollander is their director. He asked me to post this release he sent me for NET Cancer Awareness Day.

• Understanding tumor biology to discover possible biomarkers, targeted treatments and tools for earlier diagnosis;
• Building a strong bench of committed researchers through grants and awards to support young investigators and emerging research talent;
• Leveraging exciting developments in cancer immunotherapy and potential targeted therapy breakthroughs in other cancers, and bringing the leading techniques and experts to the work to control and cure NETs;
• Providing objective, valid and actionable information and guidance to patients and families dealing with neuroendocrine cancers.