Afinitor is an oral drug approved by the FDA in 2012 for hormone positive and HER2 negative advanced breast cancer patients, especially for the ones who are post menopause heavily exposed to chemo drugs already.
My cancer is a different type; hormone negative and HER2 positive, but in a study of Dr. Slamon, the women like me were given Afinitor with Herceptin and Taxol and stayed without cancer progression about 20 months as a median. This number is really encouraging.
The oncologist told me to start adding Afinitor from next week, when I start the 5th cycle of Herceptin and Abraxane.
My concern is the side effects. Major possible side effects are mouth sores and infections, which could become fatal. Also, nausea, diarrhea, taste change, fatigue, elevation of cholesterol and blood sugar. One of the ladies, who has had Afinitor told me that she could be on only 4 months because she became diabetic. There are also lucky ladies, who say they could handle Afinitor pretty well.
In my case, the white blood cell count has been already affected by Abraxane. Platelet counts dropped so low with TDM1 that I had to hold the infusion. The blood sugar level has been in the normal range since I got off a steroid, but the cholesterol level is already high. Also I have tendency to have urinary tract infection.
As most ladies who have had Afinitor have hormone positive breast cancer, the protocol of the dose may be different from mine. Yet while their doses are 5-7.5mg, I was told that my dose is supposed to be 10mg!
Being freaked out, I asked the doctor if I could start from 5mg and gradually increase the dose. Thankfully she said ok.
I wonder how long I can be on Afinitor–It’s all up to God.
A virtual breast cancer community, Inspire, which I joined last year, has been very helpful. There women come with advanced breast cancer like me or their family members – from all over the world, and share their experiences, new drugs and trials they learned, or payers and encouragements.
Regarding Afinitor, which I will start next week, I learned that if the dose is over 5mg, the ladies can’t handle the side-effects, but the effectiveness doesn’t change even if it increases once it hits 5mg. Also I learned that if you take Afinitor putting it into a gel capsule with lots of water, it prevents mouth sores. That is great information and I got encouraged.
Today I read about a woman, who has been on Haraven, which will be one of a few my future medicines, saying that her big metastasized tumor in her liver shrunk into a half size and almost all tumors in her bones disappeared. She is in NY and her cancer is hormone positive and HER2 negative, which is different from mine. So her regimen with Haraven must be different from mine, but it is still hopeful and encouraging.
In the internet, there is too much information including many shady ones, but I can trust the information from the experienced cancer patients. They also give me something a doctor can’t give.
Since there are still a lot we don’t know about, but also the medicine is improving everyday, getting the right information is vital to fight against cancer. And I am thankful that I can get the hottest ones from all over the world through Inspire.
I have to take Afinitor every day and today is the fourth day. The
instruction says to wash hands after I handle the drug. That makes me feel this drug is seriously dangerous. It makes sense of why the
people, who have taken the drug already, said to take it putting into
a capsule and with lots of water.
I can take it with or without food, but since it has to be always
at the same time of a day, I decided to take it at 10:30pm with a bit
of banana hoping to avoid nausea.
Mouthwash and gargle are also recommended to prevent mouth sores and infections. I increased the dose of vitamin B, which is effective for the mouth sores, and added vitamin C in my daily supplements. I put
masks into my purse, as well.
To prevent the elevation of glucose and cholesterol level, diet
must be important, but also exercise, too, I think. So I went to a
park this morning to run. I felt good, but pretty soon after, I got
exhausted with muscle ache, and laid down on a couch.
The instruction also says that I should avoid exposure to the sun just
like other chemo drugs, but this time, this warning sounds important
more than any other drugs.
I am very conscious with the side-effects, but adding Afinitor, I am
” I cried out to the Lord, and He answered me from his holy mountain.
I lay down and slept, yet I woke up in safety.
For The Lord was watching over me.
I am not afraid of ten thousand enemies, who surround me on every
I ‘ m ready to fight again this year with the Lord, who promised me
never to be forsaken.
It has been 7 days since I started Afinitor. After dinner, I began to feel sore on the tip of the tongue. As I look at a mirror, it’s getting red. It must be mouth sores. I am already taking a double dose of vitamin B12, but I took one more tablet with one more tablet of vitamin B6. A neurologist told me that too much vitamin B6 can cause peripheral neuropathy, but vitamin B12 is not harmful because excessive B12 goes out of the body. Next morning this helped and I felt better.
The lab result this week showed every blood cell count was in the normal range, but the platelet count was decreased from 225k mcl to 156k mcl while normal minimum count is 130k. Though I can help white blood cell count by Neupogine, there is nothing to do to increase the platelet count except blood infusion or holding Afinitor, which I’d like to avoid. I hope and pray that the side-effects won’t get worse.
Life is full of stress. Unexpected trials happen one after another.
Many nights being frustrated, angry, and sad, I’ve sighed loudly and couldn’t sleep. Then I was given “The Serenity Prayer” of Reinhold Niebuhr. I’ve prayed this prayer aloud repeatedly. Then my coarse heart became softer and softer.
The Serenity Prayer
Grant me the serenity to accept the things I cannot change;
The courage to change the things I can;
And the wisdom to know the difference.
Living one day at a time;
Accepting hardship as a pathway to peace;
Taking, as Jesus did, this sinful world as it is, not as I would have it;
Trusting that You will made all things right if I surrender to Your will;
So that I may be reasonably happy in this life and supremely happy with You forever in the next. Amen.
The doctor said the heart ECHO this time was better than last time; actually better than the average. Praise the Lord!
Three weeks ago when I took the first ECHO of this year, my blood pressure also arose, and it hit 160. That’s why I was worried as the doctor said the ECHO result showed the heart function was declining. Yet, perhaps that time I was under stress. Now the blood pressure came down to the normal range, too, so I am very thankful.
On the other hand, the platelet count went down again to 136. Bloody nose and skin itch has began, as well as more mouth sores. All of them are the side-effects of Afinitor.
Then, today as the next day of the infusion, after dinner, I became nauseous, chilly, and had a bad headache. Being overwhelmed by the multiple side-effects, I was tempted to skip Afinitor, the oral medicine.
Perhaps those symptoms are not from Afinitor but other chemo, Abraxane. Wondering if I should take or not take Afinitor all night, after all I chose not to.
“ Don’t worry about cancelation. I understand it’s tough to have chemo.”
Since our wedding anniversary (3/26) was approaching, I was looking for a vacation rental to make one more good memory of the anniversary with George. Yet, as usual, I may have to cancel the trip any time. As I told the house owner that I would need to buy insurance for the case of the cancelation, he surprised me with the thoughtful answer.
In the past, I have experienced the same kind of acts like receiving one more extra free stay from the house manager, or a cancelation of penalty of a flight from the travel agency, who learned I had cancer. This time also I was touched by the kindness of the house owner.
In the Republican residential primary TV debate on Thursday night, Marco Rubio, the 2nd generation of Cuban-American was saying ,” The US is the most generous country. It’s not because of tax write-off. It is because we are influenced by Judeo-Christian values…. “ I totally agreed with him.
God is being pushed away from this country more and more, but there are still lots of people who are applying the most important teaching in the Bible;” Love your neighbors as yourself.”
I have had food delivered every week when I have an infusion,been sent house cleaning ladies, and invited to musical concerts, baseball games, a seminar, etc. The genomic test fee, $5000 was discounted 100%, as well.
My gratitude will never ends, and no matter where this country will head, I must apply this powerful teaching just like so many generous Americans–Listening to Marco, I thought so.