Dawn Marie's NET Cancer Fund

$22,505 of $45,000 goal

Raised by 122 people in 39 months
I don't look sick, but, you should see my insides. 

Hi, my name is Dawn Marie. You might know me from the music world , the tile world , the holistic health program at St. Catherine, from yoga studies, from the cancer support group, the English Springer  dog rescue group, as a classic film  lover  or just because we have stumbled  across each other along the way. I've floated in and out of a lot of various circles over the years. If you know me well, you know that I have never limited myself because of illness, despite having been on this journey for a very long time. In the summer of 2007, I started feeling run-down. I finally broke down and went to the emergency room thinking I was dehydrated and maybe a little depressed. They admitted me to the hospital and gave me four transfusions that weekend, while they tried to figure out what was going on. Days turned into weeks and months. I had multiple tests done and we were getting no answers. Finally, in October of that year, I was diagnosed by endocscopic ultrasound with a neuroendocrine tumor on the tail of my pancreas. 

What's that you said?

Neuroendocrine tumors are rare neoplasms that occur throughout the endocrine system. Mine just happened to start on my pancreas. This is the same kind of cancer that Steve Jobs of Apple died from.  These tumors secrete hormones that cause debilitating symptoms, so a medication called octreotide is given to help counterbalance the symptoms and slow down tumor growth. Since neuroendocrine tumors are rare, they are often known in the medical world as "zebras."

What I have been doing.

Since 2007, I have vigilantly and aggressively treated my cancer with the tools that are available in the United States. I've had three massive open abdominal sugeries, did an unsuccessul round of oral chemo  and take painful monthly injections  every four weeks, plus subcutaneous shots  twice a day. Despite taking good care of myself and working with a multi-disciplinary team  of specialists, my disease has begun a farily quick progression that requires me to seek treatment outside the United States. My liver is riddled with larger and smaller tumors and they are growing at a faster rate than we have seen previously.

Say what?

PRRT  (Peptide Radionucleide Receptor Therapy) is a treatment that has been used in Europe for nearly two decades. It is only in two small trials in the United States, which are difficult to get into. I have been on a waiting list since 2014 for one of them. Sadly, I can't wait anymore. I need to get treatment now, so I am going to Switzerland to pursue treatment options. The good news is, I am an excellent candidate based on specific testing they require to assess candidates.

So, what's this treatment going to do?

My doctor in Switzerland  has prescribed three rounds of PRRT. In my  situation, he recommends one treatment cycle of 90Y-DOTATOC and two treatment cycles of 177Lu-DOTATOC in an interval of about 10 weeks.
He feels that the 90Y-DOTATOC is more effective for the treatment of my larger tumors with a diameter of more than 1.5 cm whereas 177Lu-DOTATOC is more effective for the treatment of the smaller tumors. Since the MRI scan from January 6th 2016 describes progressive larger and smaller metastases in the liver a combination of 90Y-DOTATOC and 177Lu-DOTATOC is likely more effective than a monotherapy.

Packing my bags

What does all of this mean? I have my first treatment scheduled for May in Basel.  Since this treatment is not FDA approved, it's unlikely that it will be covered by my health insurance. The treatment cost, which is all going to be out-of-pocket is roughly $12,500 per treatment, plus, there is airfare for myself and my Mom, and lodging for the one week that we will be in Europe during and just after my treatment. I will repeat this same process in July, then again in October.  Best case scenario is that this treatment will slow down the progression of my disease for a few more years before we have to do another major intervention. When it is all said and done, I don't think I am underestimating that this will cost right around $45,000. When I return from Europe, I will likely be trying another oral chemo, which I may or may not have a great reaction to. 

Why this is so important for me and my family

Asking for help has never been my forte, in fact, I pride myself on my independence. My disease journey has been a massive life lesson that, sometimes, you have to let people help. Aside from the obvious toil this has taken on me emotionally, it is also extremely expensive. I have been fortunate to have worked full time, when I haven't been on medical leave, throughout my illness, and have had health insurance that covered a lot of what is available to me in the United States. Even with insurance, it still costs me thousands of dollars a year out of pocket. This new treatment plan is the most expensive yet for me.

I have been fortunate that my Mom and Sister have been able to help care for me during my many rounds of treatment. Driving me to appointments, caring for me post-surgery, helping to care for my pets, clean my house and being massively supportive, in general. Since I have been involved in so many different projects, I have a support group of friends that are awesome in so many ways. My whole disease course has been pretty traumatizing for all of us and we are all just hoping for a few more years of stability with my disease. I do a lot of work with my local cancer support group to help other patients understand treatment options and their disease. I have helped them with their website and try to help other patients as necessary, I'd like to be able to continue to do this good work for as long as I can, until, maybe there is a day that treatment options aren't so limited - or at best - there is a cure. Help me tame this wild zebra.


Dawn Marie

I can't thank you enough.

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In August, I went to see my specialist in Iowa City and was presented with terrible news. The lesions in my liver went to 5% tumor burden in January 2017 to 30% tumor burden in August 2017. PRRT was completely ineffective for me. (Or maybe it was effective and the results could have been worse.) But, my tumor activity was never this active prior to treatment.

Doctor O’Dorisio told me that sometimes they see this happen with PRRT – where the tumor become very aggressive after PRRT and then stabilize. But, he also said, we don’t want to wait around to see if that is going to happen. So, I am slated for more treatment in the next month. They offered me two options at this point either embolization or an oral chemo combination called CapTem.

First option is embolization. There are three ways they can do embolization:

There are pros and cons to each. Embolization is a radiology procedure that is not as invasive as surgery. Each are performed the same way, they just deliver different types of treatment material to the liver. They pass a catheter from an artery that starts at your inner thigh up to the portal vein in the liver. From there, they are able to follow the veins which are major blood supplies to the tumors. From there they deliver whatever material is chosen for your treatment.

Bland embolization or arterial embolization is also known as trans-arterial embolization (or TAE). A dye is usually injected into the bloodstream at this time to help the doctor monitor the path of the catheter via angiography, a special type of x-ray. Once the catheter is in place, small particles (talc) are injected into the artery to plug it up. This procedure requires one day hospitalization for observance. Patients tend to have more side effects such as nausea from this procedure, but, it is rarely a major concern.

The second method we discussed was trans-arterial chemoembolization or TACE. This is done by using tiny beads that give off a chemotherapy drug for the embolization. TACE can also be done by giving chemotherapy through the catheter directly into the artery, then plugging up the artery. Dr. Howe and Dr. O’Dorisio both agreed that chemoembolization was out for me. Since I had so much good liver left, they wanted to avoid this as chemoembolization can kill good tissue in the liver, too.

The final embolization method is radioembolization. This is done by injecting small beads (called microspheres) that have a radioactive isotope (yttrium-90) stuck to them into the hepatic artery. Once infused, the beads lodge in the blood vessels near the tumor, where they give small amounts of radiation to the tumor site for several days. The radiation travels a very short distance, so its effects are limited mainly to the tumor.The obvious “con” with radiation is – well – radiation. If you have already hit your lifetime radiation limits, it can preclude you to the treatment. If you are a candidate it takes multiple procedures. The pro is, most patients respond very well to it. While it requires multiple procedures, each is a one-day, no hospitalization process.

The second option is a chemo regimen that is quite effective for many neuroendocrine cancer patients called CapTem. CapTem is a shortened abbreviation for two types of medications, capecitabine (Xeloda) and temozolomide (Temodar). The two medications are taken in a specific order, capecitabine first, temozolomide second. Through studies it was found that this approach is more effective than giving both drugs at the same time. This combination has been effective, even in patients with tumors that hadn’t responded to any other standard treatment, including chemotherapy, high-dose octreotide, radiation therapy, or surgery. The rate of serious side effects is relatively low with CapTem. But, if you remember my experience with Afinitor, I did not do great with oral chemo. Lots of side effects.

After consulting with my local oncologist, my first choice is to go radioembolization, but, if they don’t feel it is safe for me, I will do the bland embolization. The radiology team is carefully calculating my lifetime radiation dosage. I have also decided to work with Virginia Piper / Abbott Northwestern hospital in the Twin Cities for this next round of treatment. Turns out their radiology department is extremely experience with liver embolizations and actually does the third highest volume in the United States of radioembolization. They are quite versed in neuroendocrine cancers and have done a number of embolizations after patients have done PRRT in Europe. Radioembolization at University of Iowa would just require so much transportation (four trips in total) over the next couple of months, and honestly, I driving 10 hours round trip for one treatment is out of the cards for me.

The obvious question is: do I regret doing PRRT? Not really. I am happy I gave it a chance since it is touted as such a great treatment option. Many people get up to four years of stability from it. It didn’t work for me…which is exactly why I need this to be spelled out in black and white for everyone to read. Just because PRRT is a great treatment for many….it isn’t for everyone. I had every reason to do well with this treatment and it failed. This is why I always stress to patients that they must remain engaged and advocate for new treatments. PRRT is only one piece to our treatment puzzles.

So, with this last post, I am closing this PRRT blog. Should it ever seem to be a viable option for me again, I will consider it, but, with a lot more skepticism. I was incredibly confidant this modality was going to be the silver bullet for me. Sadly, it was not.

Thanks for following me through this process. I’m at a new fork in the road, it’s just following a new prong.

This will be my last update on the GoFundMe page. Just wanted to let everyone know how my therapy went and what my next steps are. You can always follow my treatment process at our local non-profit website. Here you will find more information about neuroendocrine cancer, meet some of our members and follow the latest news in regards to diagnosis and treatments.
Which prong to follow?
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So, it’s been a ridiculously long time since I posted and for that, I am sorry. I meant to update in May as a one-year anniversary of my first round of treatment and I was still slogging through some side effects. If you remember from the last time, I posted about my third round of treatment being a doozy. It was, and maybe, still is. Let me explain.

The double whammy

In November of 2016, I switched from Sandostatin to Lanreotide as part of my monthly treatment. Since Sando had slowed down effectiveness for me, my team thought Lanreotide was the way to go. Unfortunately, it went badly. First, I got massive welts from the injection site that were not just “bad injections.” They were literally as large as a softball and itched like hellfire. It would take two weeks for them to dissipate. Also, my flushing was extremely severe. I began to realize it was more of a systemic allergic reaction than flushing. In any case, I took Lanreotide for four months and then switched back to Sando. Guess what? No more welts, no more flushing symptoms. Oh well, I tried. It was the first part that set me back in my post-treatment recovery.

The second part was a resurgence of neuropathy. Back in 2013, I did a round with Afinitor. It went poorly. Many people benefit from this drug and I hoped I would be one, but, I reacted terribly to it. One of the long-term results of it was a nasty case of neuropathy. It flared up badly the summer of 2013, and subsided until my next surgery in 2015. It lasted for about six months and seemed to mellow out. So, my neuropathy was more of a side effect of Afinitor, and ebbs and flows throughout my treatments.

After round three of PRRT, neuropathy reared its ugly head, again. I guess I shouldn’t have been surprised. My hands and feets would be flaming hot at night. It was so uncomfortable, I wished I could peel my skin off. It kept me from getting a decent night’s rest. I felt like I was on fire…even in January. I finally resorted to trying medications for it.

What worked for my neuropathy treatment

My doctor placed me on Cymbalta and gabapentin to help treat it. While it helped bat back the neuropathy, it also made me extremely fatigued. I felt like I was persistently underwater, just barely able to come to the surface for oxygen. After scaling back and moving my meds around, I was finally able to strike on a combination that works for me. I now take gabapentin in the evening and a very low dose of Ritalin in the morning and mid-day to help with my fatigue. It’s made a world of difference for me. So much so, that I have just restarted going back to work at a 40 hour week again. It’s been 21 months since my last surgery and my round of PRRT last year since I have worked full days. Hopefully, this will continue to work for me.

In terms of the actual PRRT treatment, I think I am doing well. Last January, I had an MRI in Iowa City that showed that my largest tumor was showing shrinkage to about half of its size pre-PRRT treatment. Many of my smaller lesions were not seen. PRRT will still make changes for up to a year after the last round, so, I anticipate shrinkage (or at least stability) will still be the trend for me.

In August, I go to Iowa City again for follow up with doctors O’Dorisio and Howe. My local oncologist, John Seng has been amazing through this whole process, working closely with Iowa and Switzerland. My palliative doctor, at Virginia Piper Cancer Institute, Kathleen Regan, has been great to help me manage pain and fatigue and works closely with Dr. Seng. I really couldn’t ask for a better team.

Go Northwest, young lady

I like each of my posts to reflect the reality of my disease and the fact that while sometimes it sucks, I live a full, oftentimes fun, and complete life. Every day as soon as my feet hit the floor, I am constructing the best life I can for myself. In June, Mom and I took a vacation. Mom had that plane ticket for Switzerland that she wasn’t able to use from last year when she hurt her back, then, her knee. (Coincidentally, she is undergoing a full knee replacement this week.) Anyhow, we visited Alaska for summer solstice. It was breathtakingly beautiful, and so nice to just go on a trip somewhere that was not for medical reasons. So, rather that wax poetically about Alaska, because, believe me, I could, I will leave you with a few photos to inspire you. I am a firm believer that while you have to remain engaged in your disease, being your own advocate and following your instincts, it is also important to just live!

So, that's all I have for this update. It's been a long time, but, I feel a little like I was running in a hamster wheel since the beginning of the year. I will post more next month after my visit to Iowa City.
Icefields near Holgate Glacier
Mom and I in a helicopter!
Turnagain Arm
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I am sitting in my hotel room after my day-long visit with my doctors in Iowa City. This is my first official followup post-PRRT treatment in Switzerland. They ran a gamut of bloodwork and had me do an MRI to assess the disease in my liver. As you know, this past year has been particularly hard for me, medically and personally, despite moments of light.

The good news is, everything is stable, if not shrinking. Both doctors are very pleased with my MRI. They both stated the effects of PRRT won't be fully seen until a year. after my last treatment. Let's keep hoping for more tumor shrinkage! PRRT is not a cure, but, if it keeps me in check for a while, it's worth it! Studies have shown on average of four years of stability after PRRT. My next followup will be in six months and thankfully, that puts us into June.

For years, I have gotten painful injections every four weeks to help with tumor and symptom control. After my last round of treatment in Switzerland, we switched my medication from one brand to another. They are essentially the same, but formulated differently and they way they are released. Each drug is what is called somatostatin analogue. Somatostatin is a naturally occuring hormone that all of our bodies make that regulates our endocrine systems and their release of other hormones. Somatostatin has been described to me as a "universal off switch," that tells the endocrine system - "hey, we got enough of this hormone." Our bodies are pretty smart that way.

Anyhow, I went in for my third shot last Friday of the new medication and had a bad reaction. The area around the injection site swelled up to around the size of a softball and itched like hellfire. I've been using Benedryl pills and gel since last Friday...oh, and ice packs accordingly. MN Oncology is working with the pharmaceutical company to determine what are the next best steps. Can I stay on their analogue? Time will tell. But, there is a potential third option. The third option is using an insulin pump with short-acting form of this drug. What this would do for me is release the drug all day every day into my system. It actually is the best way to get constant coverage of this medication.

Our drive down on Tuesday afternoon was hellacious. I had to be here for very early on Wednesday morning, and naturally we had a band of heavy snow fall in southern MN and northern IA. Our usual five hour drive was seven. What made it particularly bad was the near white-out conditions from heavy winds.

On a side note, while we are much closer to getting PRRT approved in the US as a treatment for neuroendocrine cancer, there has been another bump in the road. The end of December, the FDA had a hearing about the trial results - which is the furthest PRRT has advanced in FDA-land. The FDA made them re-arrange all the data that was presented on December 28 and have set another date for next July. So, hurry up and wait. As I have told patients, even though we are closer than ever - if you need treatment - do it now. Don't wait for a trial or wait for it to become approved. Best case scenario at this point is even if the FDA approves it next July it will likely be early 2018 before insurers have the codes in place to approve the treatment.

I have been down this road for nine years now and they have been saying PRRT was going to be approved "next year" every single year since I started. Maybe next - next year. I don't regret going to Switzerland for treatment one bit and would do it again if the systems are not in place to get proper treatment in the US.

As you know, I am a knitting fool. When the weather is cold or am I unwell, I obsessively knit. Attached are a couple of photos of what I have been knitting the last few weeks.

Oh, and Polly, my elderly, sickly Chiweenie, is chugging along. Despite her cancer diagnosis, she is still hanging in there, bossing me around and telling me what to do. As long as she still has a fire in her little belly, who am I to deny that? I've also included a recent photo of her.

Happy 2017!


Poly 2017
She who knits the most, wins.
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Merry, happy name your holiday, everyone!

I won't lie. 2016 has been so hard. Everytime I think I am in a good place, the universe corrects that issue and reminds me that, oh, yeah...too bad this is not going to be your year. It started with the sudden death of David Bowie, which left me catatonic for about two weeks. Then months of trauma going through treatment, and the deaths of several of very important members of my cancer support group. But, the last month and a half has been the final straw.

As you know from my last update, round three was tough. It really took the wind out of my sails. My liver enzymes elevated to twice of what is usually normal. They eventually settled down into the high normal range in mid-November. I started to feel a little more lively around Thanksgiving.

After round three I have been having more side effects than I did with rounds one and two. This might seem crazy, but, I can feel more "heat" coming off my liver area, where the bulk of my disease was. My neuropathy of flaming hot hands and feet has also flared up. The good news here is, winter is more bearable because now if my appendages are on fire, I can go stand on the deck (or in the snow!) to cool down. It works. Hey, we all need to get to whatever place it is to appreciate winter. I found mine.

Then December came and reminded me...oh yeah...2016 is not done yet. My friend Ben passed away in the "Ghost Ship" fire in Oakland. He produced a show "The Croon Wave" on my streaming station Bombshells Radio. Ben was only 32 and had a promising future. It was devastating on so many levels. I was just past the ugly crying stage of my grief from his death and I brought Polly, my Chiweenie to the vet. She had become very vocal and restless at night. I assumed it was senility, since she is 16.5 years old. Nope, she was diagnosed with cancer on December 22nd. The vet thinks it's lymphoma or some type of leukemia. I am heartbroken. I don't know how much more time I will have with Polly, but, I will love her for as long as I can.

Polly, Sophie, Zoe, Mom, Joy and I celebrated last night. We opened mystery gifts (pre-wrapped gifts we bought at a church fundraiser this fall), drank Tom and Jerry's, and ate way too much food. We also dressed the dogs up in ridiculous headgear in a annual tradition known as the humiliation of the pets. It was a nice way to punctuate this dumpster fire known as 2016.

My next appointment with my specialist in January. Mom and I will drive down to Iowa City to see O'Dorisio (endocrinologist) and Howe (surgeon). They will run scans and re-stage my disease. Fingers crossed that 2017 will be a year filled with healing!

Love to all,

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$22,505 of $45,000 goal

Raised by 122 people in 39 months
Created April 6, 2016
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