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Pancreas Cancer

Thoughts... was posted 08/17/2016 10:32 am by Anonymous
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I am so sorry that you family is faced with this rough diagnosis. The fact that your wife is young, in good health, with essentially no symptoms is excellent and means she will tolerate treatment better than anyone. What is important is to be followed by the best specialist in pancreatic cancer that is available in your area. Penn should be a good place to start. Perhaps folks on this board can recommend their favorite doctor? Thomas Jefferson also frequently gets good recommendations on this board, and could be considered, especially if a second opinion is needed.

What we know is that our treatments for Pancreatic cancer right now are not as strong as we need. But there are new discoveries being made every day about new ways to treat cancer that are exciting. For that reason, I strongly encourage you to ask every doctor you see at every visit if there are any new Clinical trials that your wife might be eligible for that you should be considering. Some of the most exciting treatments are still in early stages, and because you are near a major hospital, you might have access to some of them. Often there are many restrictions as to who can enter them, and when, so whenever you have a 'window' in your treatment plan.... you must review all trials your wife is eligible for. 'Immunotherapies' that help stimulate your own immune system to fight the cancer are at the forefront.

I would also ask whether a biopsy of the tumor (perhaps from one of the liver metastases, which might be the easiest to reach) could and should be done to do genetic testing of the CANCER ITSELF. It sounds like the doctors are testing your wife's DNA? It is also popular now to look at the cancer, to see what mutations are present in the cancer that helped it to grow. While it is still controversial, there are indications that knowing the mutations both in your wife's DNA and in her tumor's DNA may help guide treatment choices. For example, one specific medication might help patients who have inherited mutations in their 'DNA repair genes', and a different one might help people who have a tumor with a mutation in the EGFR gene for example....

Forgive me for all the terminology. Slowly these things will become familiar to you.

And remember - right now is her biggest window. She hasn't had any treatments yet. Some trials are only open for people like her. The other treatments that would be offered outside of trials are chemotherapy (for Stage 4 disease). She can always go back to that later, if the trial is only able to control the disease for a period of time. So ask about trials. And also remember, there is not one absolute right/wrong way to treat this disease. FOLFIRINOX is a mixture of 3 chemotherapies that has the strongest evidence for effectiveness, and is also a common starting place for those in good health.

There are several people on this board that have been living for several years with Stage 4 disease, usually controlled with chemotherapy long term. It is possible. The healthier you are, the more likely this could be your wife. Don't focus on the statistics. Your wife is already an outlier because she is so young, so chances are good that she will be an outlier in her survival.

It is also very important to treat all symptoms related to the disease, and to aggressively ask for help from the oncologist, the oncology nurse, the chemo nurse, other docs in the cancer center as needed (eg. nutrition, pain, psychiatrist) and a very good gastroenterologist with expertise in the pancreas. Even a primary care doctor is important. With complicated disease, and short clinic appointments, you need a team of experts helping you. Slowly start collecting these names.

Be aware that depression is a symptom of pancreatic cancer. It is actually caused by the tumor. When it rears it's head, reassure your wife that this is typical and it must be treated.... just as aggressively as pain or nausea. Ask for help from the oncologist and if they are less interested, see the cancer psychiatrist or even her primary care doctor.

I recommend asking for copies of everything from the doctors, and keep a 3 ring binder of all lab tests, imaging reports etc... Start a notebook where you write down questions for the next doctor's appointment, and then write down the doctor's answers. This will be so helpful if you can take this burden off your wife's shoulders to be her eyes and ears.

And remember... she is a wife, and mother, and needs to feel like this every day. She is not just a PC patient. Her kids will help keep her going. You will keep her going, and at times, will be a punching bag. It is what it is. Planning small family activities to look forward to will be helpful. Surrounding her with supportive friends/family that help with occasional meals, cleaning, babysitting, rides will be helpful.

You need help. Find one friend or family member that you can vent to, as you can't fully vent to your wife. Find a support group for spouses. That will help a lot. And come here, and we will help you.

One day at a time. Take a deep breath. You can do this.

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