housekeeping: part 2

My most popular post last year was the housekeeping post I wrote in October 2011 to explain my diagnosis in further detail. This post, as well as my About page and Updates page, were getting a little out-of-date. So I deleted my Updates page, made my About page more in-date, and i’m writing this post to replace my prior housekeeping post (now called “housekeeping: part 1”).

It occurred to me that because my posts are so vague, it’s difficult for my readers to tell what is going on with my treatment. I don’t like to give too much detail because A) it’s not necessarily my intention to give treatment advice to fellow pancreatic neuroendocrine cancer patients–everyone’s case is different–and also because B) this blog is primarily a place for me to talk about what it’s like to live with cancer as a 20-something year-old woman. The details about my diagnosis and treatments are almost secondary to the fact that i’m trying to live my life with this disease. Still, I would be curious if I were you. So I invite you to read on and to ask me questions via email or in the comments.

My boyfriend tells me that the most frequent question he gets when he tells people is: “Wait–she still has cancer?” Yes, if you haven’t gathered that already, I still have cancer. It is possible to have cancer for many years and not die from it or get cured. I started feeling symptoms almost three years ago and I was diagnosed two years and two months ago, but I have probably had it for many more years than that. When I was diagnosed I had a primary tumor in my pancreas and metastasis in my liver. I had surgery two years ago to remove many of my tumors but there are still some left in my liver.

My cancer is considered chronic. It is something the doctors say I can live with for a long time (I am a liver), but at the moment there is no treatment that is likely to send it into remission. When I am not actively treating it, it is growing, so over the past two years I have tried three different oral chemotherapy regimens in an effort to keep it from growing and, if i’m lucky, to shrink it. One regimen didn’t work, one worked really well for over a year, and the latest worked half-heartedly for six months.

Right now my tumors are growing because i’m waiting to see what comes next. I’m starting to feel some of my early symptoms again, like nausea and the food pickiness that came with it, and the small pain that has been present off and on since last year at this time.

The timing of this post is fitting because it is a new year and it seems that I have now reached another turning point in my treatment.

Instead of my oncologists reaching for the next drug they can prescribe,  they are talking more seriously about the “other” treatment options. These include the “ation” procedures I have previously mentioned (here and here). These are achieved through interventional radiology; one of my oncologists calls them “locally destructive,” meaning they target the tumors that remain in my liver with either chemo or radioactive microspheres. You may remember that liver transplant was on the table at one point. It doesn’t really seem like it’s an option anymore.

They are also talking more seriously about what seems to be the most promising of all treatments for certain types of neuroendocrine tumors (NETs): peptide receptor radionuclide therapy (called PRRT). The fact that it is not yet approved by the FDA and offered at only a few centers around the world, most of them in Europe, makes it sound even more exciting and mysterious. The fact that it is not covered by insurance makes it sound impossible, because it is expensive. But it is so promising that a lot of NET patients scrape together the money to do it and it will hopefully soon be offered at lower costs to more patients through well-funded clinical trials. I will write about this more when the time comes.

But now, for the first time since my last surgery, my doctors are talking about doing more surgery on my liver. Knowing everything I know now about surgery having already been though it once, the thought of going through it again is jarring. But if my options are that or deserted island, I will probably pick that.


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3 Responses to housekeeping: part 2

  1. Matt says:

    A new year has begun..

    Keep moving forward, young lady!

    Blessings to you & your family!!

  2. Here’s hoping the next thing you try will not affect you too much.Won’t leave you too drained, too in pain, too..whatever. Hope 2013 is a good year..whatever that may mean in the life of a ‘liver’ such as you.

  3. om bansal says:

    hi lindsey, have been following your blog, as a fellow patient, my primary was removed 4 years ago from my rectum, while multiple mets in both lobes of the liver. my treatment has been very agressive and proactive, like sandostatin first, then TACE , then 6 cycles of PRRT, followed later by TACE and now i am on everlomous[afinator] which has numerous side effects, not physical , but blood parameters like blood sugar, cholestrol, triglycerides etc, so many pills to take for each of them. its been 7 months on this oral chemo. how much longer, i know not, .. i suspect that not many docs know much about this disease, i dont know if you get the same feeling. they all shooting in the dark, try this and that. well , PRRT caused disease to become stable for about a year, i understand that in 85% cases thats what happens, remission is quite rare, but procedure is not painful except nausea when they pump in huge quantity of amino acids prior to injecting Lu177 isotope. TACE, is not so forgiving, hospitalisation for 4 odd days and pain in the tummy. well , wish you all the best. i am sure you will battle on, just dont give up, fight it out, it has to be kept under control.
    i am interested in knowing what kind of chemo was given to you. how do you monitor the progress , like i do by Cga and MRI every 3 months and data noc ga 68 pet/ct scan every year. all the best

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