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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Sunday, June 8, 2014

In Limbo Again

The trip down to MD Anderson turned out to give all bad news.  The scans I did on Thursday show progression in the liver which disqualifies me for the trial.  It also means that the current hormonal therapies I'm using are not doing the job on their own.

While I was there, I mentioned the pain I have been having in my shoulder and upper back.  My oncologist thinks this pain is most likely caused by a tumor in cervical spine (C5 to be exact) pushing on a nerve.  If this is the case, it is something I have to have treated immediately as it could lead to paralysis.  He actually wanted me to go to the ER that day to get an MRI, but since I was in Houston and had a full weekend planned, I opted to wait until I got home. I'll probably go up there tomorrow after work or something (as long as none of the warning signs occur - which would mean I'd have to go immediately).

I was talking with my brother on the way home, and he was saying to be careful about going up to the ER to do this, because they might admit me and give me a bad neurosurgeon.  I think the first line of treatment is radiation (from what my oncologist said and what I have read), but surgery is always something that might be required, and if it was, I'd definitely want a very good doctor to perform it - not just whoever happens to be on call for the ER that night.  With this in mind, I'm still trying to decide the best way to proceed, and see if I can get some inside information regarding when a good doctor might be on call or something.  Otherwise, I may be better off to just go see my radiation oncologist and have her send me in for the MRI.  If all else fails, I guess I'll just run up to the ER tomorrow after work and take my phone charger, a few items and a change of clothes in case they admit me, then do my own homework to see if the doctor they assign me is decent.  I can always refuse treatment I guess if I do not like the doctor and will at least have the MRI done and have a better idea of what is going on.

Once the answer to the cervical spine tumor is resolved, the question remains which direction to go on my treatment.  One thing that was mentioned, which sounded promising, was adding Afinitor to the drugs I'm currently taking.  Research has shown that m-TOR inhibitors, like Afinitor, help overcome endocrine resistance.  Afinitor is an oral medication and sounds like a good next step.  If I don't get admitted to the hospital or have to do radiation, I'll be heading back down to MD Anderson again for an appointment this coming Friday to discuss treatment options.  He did not want to discuss it until he knew the results of the MRI and the planned treatment for it.

So again, I'm back in limbo.  Trials are still a viable option and my oncologist will be looking to see what's available and/or sending me over to consult with the "Phase 1" group at MD Anderson which is the group that sets people up with trials and tries to find trials that fit you.  If not a trial, then it will be another chemo medication or an mTOR inhibitor like Afinitor.  Who knows.  Until then I'm just in between and slowly progressing.


  1. Well, that's just all kinds of suckitude. I'm so sorry. :/ I think having your radiation oncologist order the MRI might be a good option, and in the meantime research your neurosurgeon options. But only if they can get you in quickly, since it sounds like time is a critical factor.

  2. I'm so sorry the news wasn't better. Praying for you and please call me if I can help in any way. Dana


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