Why I don't agree to Herceptin

Herceptin is a protein inhibitor and it attaches onto HER2 receptors (protein) on the surface of cancer cells and prevent the cancer cells from dividing and growing.  It is supposed to encourage the body's own immune cells to destroy the cancer cells.  It is also supposed to reduce the risk of cancer coming back in women whose breast cancer cells have a large number of HER2 receptors (HER2 positive breast cancer) on their surface.

My cancer cells are HER2 positive, ER positive and PR positive.

This is the second time I am having herceptin.  I had accepted herceptin very unwillingly as I had a heart attack from my very first dose in 2008.  My doctor had insisted that as my cancer cells are HER2 positive, it will be more effective if I have herceptin together with a chemo drug.

Herceptin is expensive and no government subsidy is offered. My first dose of herceptin cost me S$2636.  After medishield (insurance) and medisave, I ended up paying S$600+ in cash.  I don't understand why, as herceptin has been taken by patients in Singapore for some years now and the doctors like to recommend it to patients whose cancer cells are HER2 positive.

I had read that 40% of patients who had had herceptin for breast cancer later ended up with metastasis to the brain.  Probably because molecules of herceptin do not cross the brain blood barrier.  I brought this up to my doctor but her argument was that my cancer cells are HER2 positive and that results will be better if I have it.

In fact, when I checked the side-effects and warnings of herceptin, I should not even be prescribed herceptin.  The cancer has mets to my liver and I have a history of pleural effusion.

So, as far as oncologists are concerned, their target is the cancer cells.  Kill the cancer cells no matter what.

Herceptin has a whole list of side effects, including cardiac failure and pleural effusion.

I recalled that in 2008, after I had my third dose of herceptin, the pleural effusion came back.  Now, after the second dose and I was already coughing out phlegm.  With the third dose, it was worse.  Sometimes I would just be sitting there coughing out phlegm continuously.  If I leave home, I have to bring tissues (wet and dry ones) and plastic bags to collect the phlegm.  Herceptin not only did not work for me, it burnt a hole in my pocket and added greatly to my discomfort.

Sometimes, it is so difficult to get the phlegm out that I coughed so hard till I pulled the muscles on my back.  With the chemo and radiotherapy, my throat has become very dry.  Sometimes the phlegm irritated my throat so much that I ended up having coughing spasm, and also coughed till I vomited.

The following info is taken from this website :
http://www.breastcancer.org/research-news/20100511b

The HER2 protein receives several signals to make cells grow. These signals are called ErbB1, EeB2, and ErB4. Herceptin blocks only the ErB1 signal. Tykerb blocks the ErB1 and ErB2 signals. The experimental medicine neratinib blocks ErB1, ErB2, and ErB4. Because neratinib blocks all three signals, it is called a pan-HER2 inhibitor ("pan" means "all"). So neratinib might be a good treatment for HER2-positive breast cancers that don't respond or have stopped responding to Herceptin and/or Tykerb.

Unfortunately, neratinib is not available in Singapore yet.  I won't be surprised if this drug will cost a bomb too.

Onco visit, blood test, iv chemo

20 Sep 2012 - appointment was supposed to be 24 Sep, but my doctor would not be available, so it was brought forward.

Cancer marker 100 - a drop of 6 points, after so much herceptin and navelbine, is a disappointment.
White blood cell count 2.5 (low)

I was supposed to have iv chemo on 24 Sep (Monday), but my doctor suggested to have it today.

I was coughing badly and I told my doctor I did not want anymore herceptin.  She reluctantly agreed to drop herceptin after I said that I also could not afford it.  Each dose of herceptin costs me more than S$2000 and there is no subsidy from the government.  I could only claim from medishield (insurance) and medisave (which is still my money or my husband's money).

I had navelbine and zometa infusions today.
 

Herceptin (3rd dose) + navelbine

I was supposed to have iv chemotherapy infusion on 27 Aug 2012, but it was postponed to 3 Sep 2012 as I had ulcers in the mouth.

Blood test done on 24 Aug 2012 - cancer marker 106.

After the second dose of herceptin, I was already coughing up phlegm, but my doctor insisted that I should still continue with herceptin plus navelbine so that the response will be better.

3 Sep 2012 - Had my 3rd dose of herceptin.  As for navelbine, I am not sure how the dose is counted, i.e., one dose over two weeks or one dose per week.  This will be the 5th time I am having navelbine.  The 6th time will be on 10 Sep 2012.

10 Sep 2012, I went for navelbine infusion.  Had no problem with the infusion.

My white blood cell count is on the low side.  At one time, it dropped to 1.3, but my doctor still gave the go-ahead for navelbine.

11 Sep 2012, I experienced extreme fatigue.  I could not stay awake for lunch and had to take a short nap.  And, straight after lunch, I fell asleep again.  By now, I was coughing up a lot more phlegm, a sign of pleural effusion.

Since I started on navelbine, occasionally I had headaches, quite bad that I had to take painkillers.

With the herceptin and navelbine combination, I could see that the response was not very good.  My cancer marker kept hovering around 100 and the lumps are still there.  I must say I am not very pleased with the progress, possible that my immune system is in trouble with the continuous chemotherapy.

Herceptin (2nd dose) + navelbine

Cancer marker is now 110, up from 104 on 9 Jul 2012.

6 Aug 2012 - Had iv chemotherapy infusion

2nd dose of herceptin and 3rd dose of navelbine.  Herceptin is given once every 3 weeks.  I was not very sure, but I think I had my first dose of Zometa as well.

Navelbine is given once a week for 2 weeks and the 3rd week is a break week.  Fourth dose of navelbine will be on 13 Aug.

I had felt pain on my left arm after the first 2 doses of navelbine, and the pain had lasted for more than 2 weeks.  However, after the 3rd dose, I did not seem to feel any pain at all.

I could not recall which dose of navelbine it was that I had to have the needle re-sited as the drip was not going smoothly.  It was the second time that this happened.

I also could not recall if it was the first or second dose that navelbine caused a small bump (like burnt mark) on the vein where the tip of the needle was.  After 2 weeks or so, the skin over the bump dried up and peeled off.  Fortunately it did not leaked out through the skin.

Herceptin & Navelbine (Vinorelbine)

11 Jul 2012 - Had heart function (MUGA) test before starting herceptin.

16 Jul 1012 - I started herceptin and navelbine.

Since 2008, this is the third round of chemotherapy that I am having and the second by iv.

My second round of chemo is Xeloda and is taken orally.

This is the second time I am on herceptin.  It is usually recommended for a 1 year course, but I had it for about 9 to 10 months in 2008 before I stopped.  I was given steroids before the chemo, and I had Benadryl before Herceptin.  I hated the effects of Benadryl.  It made me so drowsy that I had to close my eyes and yet I could not fall asleep.

That night, I could not sleep at all, although I was so exhausted after the chemotherapy that I had a 2 hour nap when I reached home.  I found out later that the steroids is the cause of insomnia.

It is slow going for the first dose of herceptin in case of possible adverse reactions and takes 1 1/2 hours.  If all goes well, subsequent doses will take only half an hour.

Vinorelbine (navelbine) comes in a small packet and if it runs smoothly should take only about 6 mins.  However, navelbine infusion needs a good sized vein and no pain, no matter how slight is acceptable.  Usually the nurse would be with the patient throughout the time that navelbine is running (at least mine was).

I experienced a very slight pain when the navelbine infusion started running.  The nurse stopped the drip and the pain was gone.  She re-started at a slow pace and the pain came back.  As the pain was very mild, I told her that I could tolerate it, but no, the drip had to be stopped and the needle re-sited.  After re-siting, the infusion went smoothly.

It was only a short while and yet the first injection point was red and became blue-black.  I had the infusion on Monday and by Wednesday, a stretch of this particular vein turned red and was painful.

Subsequently, my left forearm was tender and painful to the touch.  I checked with a friend who had this before and was told that navelbine is one chemo drug that most breast cancer patients are afraid of as it can cause pain in the muscles and along the vein where the drug was injected.

I could only have chemo drugs injected into my left arm as the mastectomy is on my right and I had lymph nodes remove.  I also have lymphedema on my right arm as a result of the chemo I received in 2008.