Big News!!!

Where to begin?

I joined this medullary cancer board a month or two ago just so I could at least read on there what other people were going through. There are actually some MEN2a patients on there as well. One of them is named Mary and even though I only posted once on the board she has still been emailing me to get updates. VERY sweet lady.

She told me about a study that is being done at Duke University by Dr. Samuel Wells. Dr Wells has 30-40 years of experience working with the RET gene (the mutation we have), MEN, and medullary cancer. He is one of the doctors who designed the test the kids and I took to find out out results about this. VERY knowledgeable man with a list the length of your arm of credentials.

Anyway- I emailed him a few days ago and just gave him a short history and asked if he would please keep me in mind for any future studyings he might do. He almost immediately emailed me back saying I match the criteria for the current study he is doing and he would like to talk to me. I gave him my phone number and the very next day (yesterday) he called me.

The criteria is that you have to have a calcitonin level over 1000 (my last one was over 24,000) and you have to have medullary tumors of 1cm or larger (all mine are 1cm or larger). It is also of course preferred if you have MEN, FMTC, or a genetic reason for having medullary cancer.

The study is on a drug that has been shown to shrink and totally destroy some medullary cancer tumors. They first tried this drug on lung and breast cancer patients with wonderful results and found that the drug basically attacks the RET gene meaning it should do wonders for people like me. The HOPE with this study is to shrink or get rid of tumors and stop the medullary cancer from spreading or coming back. In other words, this is the prelude to what someday could be the cure for my children and their children.

From what I understand the study is 8 weeks long and takes place at Duke University in Durham, NC. The first two weeks you check into the hospital as an inpatient and they do a CT scan on you, bloodwork, EKGs and so on. They start giving you a pill once a day and check your calcitonin levels to see if they are going down (your calcitonin levels only go down if you have tumors removed or cancer cells are reduced). They also do EKGs to check how your heart is doing.

The doctor said that we would work something out so I could see my children (aka all three when/if Vin brings the oldest two and Lil Man daily) and do what I need to do for my family. That was such a relief!

It starts January 28th and as I said I have to stay there for two weeks and then can commute (8 hour drive one way) back and forth the rest of the time. After the first two weeks you have to be there weekly for half a day and stay close for 24 hours so they can draw blood and do an EKG and monitor you. If the drug is working then after the study you would continue on it with routine follow ups. You would also continue to get the drug for free. For being in this study you get the hospital stay for free whenever you are there, the drug is FREE (believe me, you do NOT want to know how much something like this costs!), and they give you a living expense so you and/or family can afford to be close by and travel for all/part of the study.

They have one patient now that is in her third week and is 77 years old. She has shown definate marked progress so that is HUGELY encouraging! The second patient starts next week and then more of us come in January.

That alone was great news but there is more. So on the phone Dr Wells asks me what I have set up in Tampa. I explain to him that they want to do an open adrenalectomy on me so they can remove the adrenal glands, the tumors in my liver, and the one in my intestine. He says I definitely need to have the adrenalectomy before I can be in the study because one of the possible side effects of this drug is hypertension (high blood pressure) and that’s not good in someone with pheos. He tells me that he is NOT trying to change my mind but if I want to be in this study they would of course need me WITH my tumors.

What that would mean is I could get a laproscopic adrenalectomy instead of the open. The laproscopic is MUCH easier. Less surgery time, three small incisions on each side of my back, less recovery time, less time in the hospital, less bleeding….. much better and what is usually done. It would mean that I would only spend a few days in the hospital for the surgery, get out, and be able to move around better after about a week. The thing with the adrenaline would still be the same but I wouldn’t be cut from side to side and have to worry about trying to heal for two to six months. They would leave the tumors alone so that this med has a chance to do it’s work on them. I would still need surgery later on for my throat even if this med works because I have two calcified nodules and I still have the hyperparathyroid problem. It would mean less work on my neck though and that helps too.

Dr Wells said they can do the adrenalectomy there at Duke if I would like (I would still have to pay for it of course) and that I don’t need to do all the scans and tests that Tampa wants me to do. Basically I would just start taking the one medication to shut down my adrenal glands 10 days before the surgery and then show up to have it done.

Let’s see what else? So the plan we are working on at this point and driving up to NC and having my adrenalectomy done VERY soon. Then we drive back, I recover for a week or two (or more depending on when I can get this done), and then drive back up to NC for the study. Rent a hotel room for 2 weeks while a friend or two stay in it with Lil Man and I get all my testing. Go back and forth taking care of Lil Man and then after two weeks come home. Make the trip up there once a week for the routine testing and then come back home. Hopefully by this summer have the thyroid surgery done and then be finished HOPEFULLY with surgeries for a very long time.

Best case scenario of this study is it rids me of tumors, kills any cancer cells, and stops the gene mutation meaning I never get medullary cancer again. It’s a long shot but at this point I will take ANY improvement or even hope for the future. I really don’t care what it does for me. I want it to have a chance to work for my kids.