An oncologist at Torrance Memorial, we were referred from our friend Mike, immediately accepted our sudden phone call for an appointment and spent almost 1 hour with me. As I asked if I could start my treatment from chemo followed by a surgery, he suggested that I should ask the pros and cons from Kaiser though he emphasized starting surgery and then chemo was pretty standard in the U.S. He also denied the possibility of metastasis saying cancer moves slowly.
I could finally meet Dr. Slamon, who helped develop Herceptin, after almost two months trying to make an appointment with him.
As he has been my hero since I saw “ Living Proof” , a movie about him and his struggles of making Herceptin available, I was excited to meet him. Yet when he walked into an exam room and offered his hand to shake, I felt so humbled thinking that this was the man who saved so many women by revolutionizing the treatment of breast cancer.
Looking at the latest result of CT scan, he started off saying that cancer might be activated. My purpose of visiting him was to get his opinion for the next regimen concerning the same, but hearing the statement from him made me realize the seriousness.
Our conversation began supposing that the suspicious lymphadenopathy was cancer, and he suggested as follows:
1) Take another CT scan soon, not waiting until the end of December.
2) Stop Taxol, which has caused so many side effects, and try Xeloda because the side effects could become much worse even with a less dose and then the recovery may be difficult.
3) If cancer is active again, get TDM-1 as soon as possible. ( I have read that FDA might approve it on 2/28/2013)
4) While waiting for T-DM1, the recommended regimen is Perjeta, a new drug approved in June 2012, +Herceptin + Xeloda.
5) If cancer is stable, try Herceptin+Tykerb+Xeloda as long as it ‘s effective.
6) Clinical trials of vaccine haven’t shown any good results yet, but the research about IL6, a protein that causes cancer’s resistance against Herceptin may be a breakthrough. Keep an eye on those clinical trials.
I got nervous as I learned that Dr. Slamon was seriously concerned with my side effects, but it also requires courage to drop Taxol, which was the first effective drug for me and could be still working, and to change to the new drug, which may not work on me. I wondered if I had to look for clinical trials of T-DM1 again, though I thought I could wait for its approval until next year.
I e-mailed my oncologist informing her of the 2nd opinion of Dr. Slamon. I was leaning on the optimistic assumption that the suspicious lymphadenopathy was due to a bad cold and I could enjoy this Christmas season until next CT scan which was supposed to be at the end of December. The roller coaster may be moving again, but I was thankful that I could meet Dr. Slamon to get his opinion.
The movie was produced in 2008.
An appointment on the 13th with Dr. Slamon, one of the inventors of Herceptin, was suddenly canceled by an phone call the day before. An assistant explained it was because the doctor went into a minor surgery.
I was surprised because someone like him who was so prominent appeared like a god, who would never get sick.
Yet, of course, he is a human being; probably he is around his 60s and traveling all over the world, he must have a very heavy schedule. It is nothing wrong if he gets sick.
A few days later, as my appointment was rescheduled to 11/20th, I was glad thinking that he was recovering smoothly. However, a phone call came from his office this morning, and my appointment was canceled again because the doctor was not quite ready to get back to work.
I wondered what kind of a surgery he had, but I thought such a question would be inappropriate. Instead I just asked if he was o.k. “ Yes. He just needs a little more time,” said the assistant.
It has been only a week since his surgery and it may take a week or so for the recovery. Yet, I am concerned about him after the appointments were canceled twice in a row. Hopefully it is nothing serious. The world still needs him. I am praying that he is truly o.k. and will recover quickly.
On the 14th I went to UCLA to seek a 2nd opinion from Dr. Slamon, the doctor who invented Herceptin, which has saved millions of HER2 positive breast cancer patients. Until then the prognoses of HER2 positive breast cancer was so poor, and probably I hadn’t been here without Herceptin.
This time, I wanted to hear what regimen would be available if I gave up Taxol, which has been causing Peripheral Neuropathy.
Before the exam, Dr. Slamon said that reducing the dose of Taxol might be ok, but after the exam, he said to stop it. It was what I expected because the peripheral Neuropathy has worsened and sometimes made me scared.
Yet the surprise was that he said to go back to Herceptin and Perjeta only.
I told him that cancer activated only within three months after I started that regimen, yet he explained that because the last two CT results were stable and if cancer activates again, add Xeloda. If the side effects become a concern, reduce the dose and stay in the regimen as long as possible. The other choice would be T-DM1, and again, stay on the regimen as long as possible reducing the dose if the side effects worsen.
I am reluctant to go back the regimen, which failed to keep me in remission, but maybe I have used all strong cards, so now I have to play with whatever I have buying time as much as possible. Or as the treatments of cancer always require monitoring the side effects, maybe even if the progression of disease is predictable, I may need to stop the treatment or reduce the medications in order to give time to recover or rest the body…I don’t know.
At the end the receptionist charged only $49 instead of $450. She said Dr. Slamon didn’t like to charge high for a self-paying patient. The world-famous doctor, who became even a candidate of a Nobel prize for developing Herceptin, was also a supremely gracious doctor. I am so blessed to be able to see him!
I have waited for three months to see Dr. Slamon – since May when I made a phone call to make an appointment with him. Finally the day I was longing to see him came.
At the waiting room, George and I waited, and even after we were led to an exam room, we waited more almost for one hour. George said, “ In the past 5 and a half years we have waited for a long time.” Indeed, I wait for clinics, exams, test results, and new magical drugs. I’ve learned being patient.
Finally I heard the knocks on the door, and Dr. Slamon came in with his young assistant with smile and offered a handshake as though we were long time friends.
“ How have you been?” He asked. I told him that cancer has been progressing, but my onc seems to have run out the options, so in order to recover my body from the side-effects, I have been off treatments almost one month. Then his face became serious and we exchanged a lot of questions and responses.
At the end he gave me four recommendations: First he told me to look into TIL immunotherapy trial, which I found a few weeks ago. Second, if it seems too long to wait for the treatment of the trial, try Abraxan, which is the different form of Taxol I have already used, with Herceptin. Besides those two, he mentioned MM302 trial, which is another immunotherapy trial, and Haraven, chemo, invented in Japan, as well. All of them have risks and slight chances to control cancer, but I got excited receiving even four options.
I will look into those options, pray, and choose the best one.