Cheese Update

CheeseQueen57 said:

Started Megace Today

Ok...started the Megace today.   We'll see what happens.  The doctor also gave me Tramedol for pain but frankly I don't want to go down that road just yet.  But I am concerned about the amount of extra strength tylenol I'm taking and its effect on my liver.  I'm going to try to look in to going back to my acupunturist to see if she may be able to help with the pain.

I never imagined it would be so difficult to schedule an appointment for a 2nd opinion.  They won't even talk to you until they have all of your records from where you are being treated.  I'm in the process of  having them sent to MSK and Johns Hopkins.  Of course, they missed sending some reports from Fox Chase to MSK so playing the waiting game...good thing I'm not dying at this point in time.  But when my doctor called up at MSK, they said they are overwhelmed and are really just taking rare cases.  She told me to try to get in with anyone they will schedule for me.  I have a name, Stephanie Gaillard from my doctor who's at Hopkins (formerly at Duke) but I have no idea if I'll be able to get in there either.  I hate to go all the way to Dana Farber ( I'm in Philly) but I will if I have to.  And good thing I'm well enough to coordinate all this. 

is so true. I feel for the people who are really sick and have to deal with the system. Good luck. For what its worth, I'm rooting for you. 

Hi Cheese:

Not sure if you are aware of it, but Dana Farber has an online second opinion program.  See:  http://www.dana-farber.org/appointments-and-second-opinions/online-second-opinion-program/.

Wishing you all the best,

MoeKay

CheeseQueen57 said:

Thanks

Dr Konner is one my oncologist at Fox Chase recommended. I'm in the process of them obtaining my records from Fox Chase. Apparently he's not taking new patients but my doc was going to call up there. My next scan is November 29 but doc said she'd want to do one earlier  if I started on Megace. Hopefully I can get appt quick at MSK.  I asked about sensitivity and apparently my tumor was hormone sensitive but still might not be effective because it was Grade 3 and I'm 60 years old. But it might be worth the try. I'll bring up the metformin again although she always says no on that. Thanks for advice. I know I'm not in for a cure anymore. 

CheeseQueen,
If your oncologist won't put you on metformin (which many won't) you can get it from your PCP.
Most oncologists do not prescribe and most are not aware of all it does for cancer.

I got my chemo treatments at MSKCC and they called my integrative oncologist unethical
for putting me on the drug, when i was pre-diabetic and insulin resistant. If you go to MSK,
it is highly unlikely they will put you on the drug. I was in the metformin or placebo with
Taxol/CArboplatin trial at MSK and got out of the trial and on the real drug.  I have been cancer
free for over 2 years now and I was also a Grade 3. I continue to take the metformin.

Takingcontrol58

CheeseQueen57 said:

Off to MD Anderson

So after going back and forth with MSK and Hopkins I decided to fill out the online appointment request for MD Anderson. I hardly had pushed the enter button and my phone was ringing!  I have appointment scheduled for October 25. Have my plane tickets. This is probably a blessing because should they suggest a different therapy, they have an affiliate in NJ where I could get treatment. So off on another adventure.  Cancer sure isn't boring. 

Our health care system can be so hard, not to mention expensive, to navigate!  I'm glad you were able to get this done and, that you're feeling good enough to do it.  Please keep us updated on your trip.

Love,

Eldri

Thanks for sharing all of this with us CQ, it's a good lessen for all of us about these 4 hospitals and getting second opinions from them. Is MDA's program like Dana Farbers that costs $2,000 and not covered by insurance?  Is the affiliate you're talking about the one in Voorhees? I used to live just north of there in Marlton. It's a very nice area.

Hoping all goes well with you CQ.  I will be praying for you

Janae

I was looking into that before my colonoscopy for something to reassure myself that they weren't going to find anything, but you have a better chance with a PET scan than a CT. The colonoscopy is the gold standard for detecting colorectal cancer, so having had CTs won't get you out of needing one. I think any anticoagulants or blood thinnners have to be held a couple of days prior to the test in case they find any polyps or other tissue they want to take to biopsy while they're looking around in there. The timing sucks, but given what you have going on, it's better to find out what this is about sooner rather than later, I guess.  Cindi is right, it could just be a hemmoroid you didn't know about. My sympathies Cheese!

No change is positive! That means no tumors still, right? I'm glad you are getting this issue checked out asap. Please let us know what you find out. Sending you loads of cyber hugs!

Love and (Hugs),

Cindi