Various Treatments Proposed By Oncologist from NCC

8th October 2015, Thursday

Went to see my oncologist at National Cancer Centre today.

The moment I saw her, she suggested that I go on clinical trials for 2 of the research projects under her.  These are for new drugs produced by Novartis and undergoing HSA testing for approved use for use in Asian patient.  Name of drug LEE011 (not yet named):

Trial 1: (Phase 1 Tria1) LEE011 + Letrozole
Aim of trial is so determine the highest dose of LEE011 that is tolerated when added to letrozole and to determine the safety and effectiveness of LEE011 and letrozole.
This trial is for post menopausal women only.  And would require me to remove both of my ovaries.

Trial 2: (Phase 3 Trial) Tamoxifen or a non-steroidal aromatase inhibitor with goselin + LEE011 Placebo
Aim of trial is to  determine whether LEE011 or placebo when added to standard treatement for premenopausal women will help to reduce the growth of breast cancer cells in premenopausal women who are hormone receptor positive. This one would not require me to remove both my ovaries.

My doctor explained that she would hope that I would go on one of these trials, the treatments would all be paid for and there would be transport allowances.  Furthermore, this was a once in a lifetime opportunity that I should jump on.

But seriously, was I excited?  No, was I happy and eager to jump on to the wagon?  No.

I had come in for a treatment.  I was hopeful because although I have multiple tumours - they are small.  (This is confirmed by my surgeon and this oncologist as well).  Apart from the PET CT scans, there were no indications that my breast cancer has attached to my lungs.  I am not breathless, there is no fluid accumulations.  My tumours are ER+, PR+ and HER- , which according to various websites and my surgeon is responsive to hormones and not the most agressive type.

I had come in for a treatment but here I am being viewed as a potential "guinea pig".  And though I do not entirely fit the profile, I am asked to remove my ovaries so that I can be part of profile.  Am I upset, yes, entirely.  TW who was at my side was visible upset as well. To add up, the onco quickly said that she would be most glad to write a letter for me to be referred to my gynecologist in KK Hospital.

I was then asked to speak to the 2 research assistants who briefed me about the trials and schedules.

The research assistants took pains to explain about the trials and procedures that I had to go through if I were approved. But they were not able to answer my questions:
Why is this treatment proposed for me?  Is it supposed to be better for cancer patients?  How is the LEE011 drug supposed to be a better drug, does it provide a better prognosis, a better chance to shrink the tumour?  What are the standard treatments in the case I do not have

They were a little caught off guard by my questions and asked if I wanted to see my oncologist again.  I knew it was no fault of theirs and replied yes.  They hurriedly went off to see my onco but a minute later came back to declare that she has taken off.

I was lost and asked them so how next?  I had many questions to ask but no one to provide answers.  Access to oncologist is limited for government hospitals.  I really felt frustrated and start thinking,
 "So this is what it feels like to be in a government hospital, right?"

I went off to make payment and followup appointment - it is to be a lengthy process right? Especially with National Cancer Centre where your oncologist sees patients only once a week for 1/2 a day. So if I reject her for clinical trials, does it mean that we go through another round of consultations before I could be given treament.  Somehow, it does not seem right to me.  I really don't like the drag.

While making appointment, the research assistance suddenly cut in.  "Doctor is in office, she came back to grab something.  You want to grab her before she goes off again?"

I quickly left the nurse and went into the office again.  Doctor did not want to answer my questions - she was not able to say if the prognosis is better for patients on the trials as there are no statistical data.  It was still in trial stage, some patients tumour recedes, some stays the same.  They are same for patients with chemotherapy.  There no longitudinal studies for the trials as well as for long term effects, increased risks possible in the long run as well as long term effects.  No data on drug resistance etc. as these are all part of research guideline.

She suggested in all 3 more possible treatments with 2 as chemotherapy and asks me to think about it as she was in a hurry to go off.

I felt horrid after all the chats.  She made me feel like I had no hope.  She made me feel like a guinea pig, an experimental mouse.  I needed to speak to my surgeon.  He would be able to better advice me.