Cheese Update

CheeseQueen57

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. 

ConnieSW

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. 

Your last sentence

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. 

TeddyandBears_Mom

Cheese, appreciate the update

Cheese, appreciate the update and I hope you have minimal side effects. Yep, our medical system sure could use some help! I don't have answers but I do know that many of our doctors are overworked. And, it sure feels like we have a shortage of them to help us. Very scary!

Putting on my cheerleading outfit to send you positive support in getting in closer to home!

Love and Hugs,

Cindi

MoeKay

Dana Farber Online Second Opinions

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

MoeKay said:

Dana Farber Online Second Opinions

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

 

 

 

Dana Farber

Thanks MoeKay, I saw that and might consider it although it costs $2,000 of which insurance doesn’t pay. 

takingcontrol58

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. 

Metformin

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

 

Amatullah

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. 

Cheese

I've been taking Tramadol for lupus for several years and what I appreciate about it is it doesn't make me high or loopy like the oxycodone I sometimes take.  Plus it really does help.  Especially on my nerve pain.  If I had to give up a drug, it would be the oxy, just because I like to feel like me.  Plus you can't really get addicted to Tramadol since more doesn't make you high either.  I wish they would stop using codeine on kids and teens and use Tramadol, since it doesn't create that 'need' for the high.  Have you had a bad experience with Tramadol?  

CheeseQueen57

takingcontrol58 said:

Metformin

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

 

Metformin

My oncologist definitely put the discussion on metformin to bed on our last visit. She said she doesn't prescribe it, the evidence isn't there, and they've pretty much stopped further studies of it. if I really pressured my PCP she may prescribe it but id really have to have substantial evidence to convince her because she would not want to go against my oncologist. Quite the dilemma. 

CheeseQueen57

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. 

EZLiving66

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

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

ConnieSW

Hey, Cheese

It must be such a relief to have made a decision and be on your way to implementing it. 

MAbound

Excellent!

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.

CheeseQueen57

MAbound said:

Excellent!

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.

MD Anderson

Nope, I'm assuming my 2nd opinion will be covered by Aetna.  I'm going down to Houston.  The Dana Farber program was totally online for $2,000.  If you went there, I'd assume it would be covered by insurance.  I think some of the offices in Jersey are in Voorhees and around there.  I didn't want to go there because they are "affiliated" with MD Anderson.  That didn't carry enough weight with me.  I wanted the real thing.  I used to work in the Medford, Cherry Hill area so that's about 20 miles from me.  So my husband's college roommate and a groomsmen in our wedding is a professor at Baylor and he's insisting that we stay with him when we come to Houston as he lives only 1 mile from MD Anderson.  I guess this was meant to be.

janaes

Hoping all goes well with you

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

Janae

Nellasing

I'd say it was meant to be!

Joining with the others and so thankful that door opened and you are walking on through to check it out.  That is one thing I did- I just kept pushing on doors and if they opened I walked on through.  We'll be thinking of you!  (((HUGS)))

CheeseQueen57

Great-another problem

So for the past few days I've had a little bright red blood in stool and on toilet tissue. This is just great! I don't want to think about having to have a colonoscopy at this point and having to stop the Eliquis. Couldn't they see if there was something major going on from the CT scan?

TeddyandBears_Mom

I have wondered about that

I have wondered about that myself Cheese. Having Lynch, I'm required to have a colonoscopy every 2 years.  I suspect the answer is no since I had a scan and a colonoscopy prior to my hysterectomy. And, just finished my latest one 3 weeks ago.

Why do you think you would have to stop your Eliquis? You may have to skip one dose but I would be surprised if they make you stop more than that.

Please don't wait to get this checked out. It could be as simple as an internal hemmoroid (sp) but you need to know for sure. And, sorry you have this to deal with now on top of everything else!

Hang in there Cheese.

Love and Hugs,

Cindi

MAbound

Wondered, too

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!

CheeseQueen57

GI Appt

I have GI appt at Fox Chase on Friday. Maybe I hold the Megace too if I have to hold Eliquis? BTW CT Scan I got Friday showed no change. I guess that's positive. 

TeddyandBears_Mom

No change is positive! That

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