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 15 Oct 2012

12 Oct 2012 - cancer marker 155

I saw my doctor on 15 Oct 2012, Monday.

With the cancer marker up and the tumors still present, my doctor cancelled my navelbine infusion.  She put me on Femara (Letrozole).

Femara is a type of hormone therapy known as aromatase inhibitor, which works by reducing the amount of estrogen produced in the bodies of post-menopausal women.

I was given a 1 month's free trial, and at the end of which, I have to purchase another 2 months' supply before I see my doctor on 31 Dec 2012.

According to the Femara website, Femara has the following side effects :
may cause decreases in the density of bones, increases in bone fractures and osteoporosis, so monitoring the density of the bones may be required;
may cause an increase in cholesterol;
may cause fatigue, dizziness and drowsiness;
may cause moderate, temporary decreases in white blood cell counts.

The most serious side effects seen with Femara are bone effects (fractures, decreased bone density and osteoporosis) and increases in cholesterol.  Other common side effects seen with Femara include joint pain, nausea, weight decrease, vaginal irritation, and pain in the extremities.  Other important less commonly reported side effects include blood clots, other cancers, stroke, heart attack and endometrial cancer.

Navelbine - side effects

I had navelbine + zometa on 20 Sep 2012.

The following day, I experienced extreme fatigue again.  This time, it was worse.  The extreme fatigue continued the following day, Saturday.  I was unable to stay alert for meals, and as a result, my mealtimes went haywire.  I had indigestion and was feverish.

I was still unwell on Sunday.  Monday, I was fine, however, on Tuesday, I was sick again.

I was becoming more and more tired with the last two doses of navelbine.

I cancelled my appointment for navelbine infusion on 1 Oct 2012, Monday.

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 & 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.

Tykerb and Xeloda side-effects

When I started on Tykerb, the pharmacist warned me not to take grapefruit.  I have never liked grapefruit so it did not bother me and I didn't ask why.

I had experienced some side-effects when I was on Tykerb and Xeloda.  I had dry cough, shortness of breath (I actually had shortness of breath even before I started on Tykerb and it was due to pleural effusion), nausea and vomiting, diarrhea, darkening of the skin on the fingers and toes as well as on my elbows and knees.  I used to rest my elbows on my knees while vomiting or coughing, or resting in a sitting position as my back ached.

I noticed that all the conventional treatment has made my throat dry and sensitive.  If I am not careful with swallowing liquid, even saliva, I would choke and start coughing.  Even a sudden intake of air would trigger a coughing spasm.

The skin around my nails were dry.  The skin on the soles of my feet could be peeled off in chunks, which caused my oncologist to reduce my Tykerb dosage.  I had actually reduced the dosage earlier without informing my doctor, and yet the side-effects were so bad.

I was perspiring a lot and I had noticed that my perspiration and urine stank of chemical smell.  A friend was visiting and she thought I had not showered.

Tykerb can also cause hepatoxicity and I wondered if that is the reason I felt pain in the liver area.

Radiotherapy

I was prescribed 12 doses of radiotherapy on my spinal column.   The radiotherapy sessions were scheduled on 25 January 2012 to 9 February 2012, excluding weekends.

Sometime around the middle of January 2012, I went for marking, which included some tattooed points.

Most part of my spinal column was affected, but the radiologist picked two most critical spots to be treated.  They were concerned that the tumours may grow bigger and pressed on my spinal cord and which may affect my ability to walk.

The treatment is not usually on one affected vertebra alone and will include the one before and after.  My treatment spots were T5, T6, T7 and T8 (thoracic), and T11, T12, L1 and L2 (thoracic and lumbar).

I had to lie flat on my back and the staff align my body for the therapy.  Each radiotherapy session lasted about 5 minutes or so.  Apart from the machine making a lot of noise, I did not feel any heat at all.  The only discomfort I had was lying supine as I had pleural effusion and had breathing problem, and my left leg where I was having problems with my sciatic nerve and, during alignment of my body, sometimes my leg hurts.

After the first session, I was totally exhausted and during the trip home by cab, I kept wanting to fall asleep.  In fact, after every session, I would sleep when I reached home.

I had shortness of breath, my leg hurt and I was very weak, that whenever the attendant at the National Cancer Centre see me arriving by cab, he would quickly offer me a wheelchair.  How observant and caring he is, I am so grateful for that.

A friend had advised me to eat steamed, big Chinese pear to soothe my dry throat.  I should have taken aloe vera as well, as I soon realised that I would be wakened up at night by my very dry mouth and throat.

Soon, by 5 or 6 in the morning, I would be perspiring profusely around my neck and head area, even though I was sleeping in an air-conditioned room.


By the eighth dose of radiotherapy, I had difficulty swallowing.  I had been concerned about my spinal cord being burnt, and I forgot that my gullet would be affected as well.

I wanted to stop, but the radiologist insisted I complete at least 10 doses.  She also said that my throat would take 2 weeks to recover.

The last 2 doses of radiotherapy caused me much suffering.  My appetite was already poor, and with problem swallowing my food, it was worse.  I had to take small mouthfuls, chewed thoroughly and try to swallow bit by bit.  Even then, the swallowing part was terrible.  I felt like I had swallowed too big a mouthful and the food was choking in my gullet.  It was worse when the gas came up from my stomach, and it felt like traffic jam in my gullet.  I cold not finish my food and, anyway, it always turned cold too.  If I had a choice, I would rather not eat nor drink anything as the suffering was just too much.

I thought that room temperature water might soothe my gullet, but it was a terrible mistake.  Just a small sip and I felt like I had swallowed something prickly, the water took a long time to go down and the pain was excruciating.  I could only place my palms on my chest and could not even utter a single word.  I realised that warm water was easier to swallow.

At the end of one week or so, I had had enough, I could not take it anymore.  I called my Master for help.  With his blessing, I realised that the next day, my misery had ended.  I could eat my first full meal in days and swallow without problem.  Thank you very much, Master.