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Sunday, November 23, 2014

Allyson returns from MI on Thursday, this is post Friday's visit:

An email I sent to my family after Allyson returns from MI and goes through another battery of tests over the next few days:

18NOV14:

Wanted to give you an update as we’ve learned a little more, and had more tests run. I’m sitting here re-writing this thing over and over because it is hard to figure out how far in depth to go with you all….hopefully I get better at providing what you want to hear and not what you don’t need to hear. 

Allyson got home from Michigan on Thursday night, and we were in with the medical oncologist early Friday morning (they made a special arrangement for Allyson to see this guy due to what happened with her dad). This medical oncologist we met is great, and actually played a lead role in the introduction of the Leukemia drug that Ed Kearney was taking after he first got diagnosed with Leukemia back in  the early 2000s. He is also very knowledgeable about Allyson’s blood clotting disorder, which gives us more comfort that we are in the right hands. He’s been on the cutting edge of a number of breakthroughs over the years…so, in general, he’s a stud.

After reviewing the history of how we got to that point on Friday, the treatment options seemed to be the same that we had heard before from the two surgical oncologists that we saw previously. We are likely headed for 6 rounds of chemo every three weeks (so 18 weeks of chemo), followed by either lumpectomy or mastectomy (probably double). However, this doctor explained that Allyson is likely eligible for a clinical trial that is contained to people in her same condition (HER-2 amplification positive…the protein growth driver that she has).  This particular clinical trial will have 50% of patients undergo the current standard of care (chemo, followed by surgery, followed by post-surgery drugs for a year). The other 50%  in the trial get a different type of chemo, but due to some sort of cellular reaction the chemo affects are drastically reduced and the growth of the tumor(s) is stymied more quickly and effectively, followed by surgery, followed by 5 years of a couple drugs. We are obviously interested in more effective treatment with less intrusion upon her health by the chemo…so we signed up.

However, in order to qualify for the clinical trial they needed more biopsy tissue so they could send it to Germany for full approval to enter this international clinical trial. The doctor also felt with his own hands some other areas of concern that he wanted biopsied. Since Ally’s first biopsy was not all that bad, she said “no problem”.  Well…Friday afternoon was WAY WORSE. They were using an MRI to guide the biopsy needle and it was way more painful to the point where they didn’t even get all they needed for the other problem areas. The oncologist also ordered a full thoracic cavity CT scan to rule out any other forms of cancer elsewhere (this is what we wanted done in the first place so we were happy with that). That happened yesterday morning.  

Today, we got news from the radiologist (MRI doctor) that they found a different type of breast cancer in her Biopsy from Friday (Ductal Carcinoma In Situ). This is the most common non-invasive (think non-spreading type) of cancer in breast cancer patients and it is the same breast as the other cancer. In doing minimal research online, having these two cancers together is not all that uncommon, and many think that have DCIS actually leads to IDC (Invasive Ductal Carcinoma that we found first).

So…tomorrow we go see the medical oncologist again to review all the new data that the MRI on Friday, and CT scan from yesterday, provide… Given that we’ve had nothing but bad news after every test run, we are very nervous about tomorrow. Ally feels that if the cancer is just confined to her breasts then she can keep a positive mental attitude about this and push on with whatever treatment that we are slated for… Please pray and send positive thoughts that we don’t find out that the CT scan found other evidence of cancer within her thoracic cavity.

As long as nothing else has changed diagnosis-wise, she will have a port put in on Thursday morning for the introduction of her first round of chemo (also likely Thursday). Linda Ally’s mom) and Megan get into town on Thursday, as Linda has escaped Michigan after all the post death procedures and is on the loose. They left MI today and will visit her sister and brother in Kentucky, and then continue down to see us on Thursday. Since Allyson will be recovering from her port insertion and possible first dose of chemo, we will obviously tell her what’s going on at that point. Wish us luck there… this stuff is too much to handle all at once for anyone...

So that is about it for now. I will send an update tomorrow evening after we see the oncologist and relay whatever news we have at that point.


I love you all, and appreciate all the notes that you continue to send. Keep sending them! Sweetness is like gold right now…

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