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Posts: 99
Joined: Dec 2012

So it's been 6 months since my husband's diagnosis and he is getting ready to go back for another scan.  Time with the doctor always seems somewhat limited so I want to get as much information as I can. It seems as though we come away from appointments never fully understanding just accepting the PLAN.

This is his second chemo protocol.  Fully expect they will change it because 3 out of the 4 times it had to be delayed because of low WBC's; which also delayed the Herceptin infusion.

Would like to ask you guys to help me form a list of questions you feel are the most significant to make informed decisions.

He is also being checked for other genetic components to this cancer for targeted therapy.  One is a Phase 1 drug trial.  We were under the impression these were to be avoided.  Again, need help formulating questions to this department.

Thanks in advance 

paul61's picture
Posts: 1260
Joined: Apr 2010

Here are some possible questions you may consider for your session with your oncologist:

  1. What drugs will I be taking and why?
  2. What criteria made you chose this particular protocol?
  3. What are the drugs supposed to do?
  4. How will we measure the effectiveness of this regimen?
  5. What are the short term and long term risks?
  6. What are the possible side effects and are they permanent?
  7. What side effects should I report to you immediately, and who do I call?
  8. If this is a trial, is there a way I can insure I get the test drug rather than a placebo?
  9. What are the requirements to qualify for a trial?
  10. Have there been any issues with insurance coverage with any of these medications?
  11. What is the frequency and duration of the infusions?

 Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Posts: 99
Joined: Dec 2012

Thank you Paul for the great questions.  I believe everyone in the trial gets the medicine.  So maybe it meaures what effects it has on the cancer and metastisis.  I never asked how many were in the study, when it started and what effects it had on the participants. 

I just was always under the impression that you wanted to stay clear of Phase I.  He really doesn't appear ill and I would think there would be other things to try first. Thanks for your input

jrdials's picture
Posts: 8
Joined: Feb 2013

Hi Again, This is not a question but a suggestion that you may already have gotten. We take a tape recorder with us that the Dr. is fine with. It's SO hard to remember everything that's said particularly under the circumstances. We've replayed our appointments many times as we often come out with different opinions of what was said. It helps a LOT !!

Posts: 99
Joined: Dec 2012

I'll ask the oncologist if that is OK.  He is a man of few words so it shouldn't take up too much space.

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