Life-Saving Meds vs Side-Effects ....

From BBC News ...
Breast cancer patients 'stop drugs' due to side-effects
 
9 December 2011 Last updated at 15:30 ET
 

About a third of breast cancer patients stop taking medication because side-effects are more severe than they expect, US researchers suggest.

The Northwestern University team questioned 686 women who were taking aromatase inhibitors as treatment for oestrogen-sensitive breast cancer.  It found 36% stopped their medication because of symptoms such as joint pain, hot flushes, weight gain and nausea.

- snip -

Aromatase inhibitors are given to postmenopausal breast cancer patients to reduce the level of oestrogen in those whose tumours were fuelled by the hormone.  About two-thirds of breast cancers are oestrogen-sensitive, and aromatase inhibitors have been shown to reduce the risk of cancer recurring. 

Information gap

 

Patients in the Northwestern University study filled out a 46-question survey rating their quality of life and symptoms associated with breast cancer and treatment.  They were asked about their symptoms before treatment and at three, six, 12 and 24 months after starting treatment. 

After three months, a third of women had severe joint pain, 28% had hot flushes and 24% had decreased libido among a range of symptoms.  The longer women were being treated, the more reported side-effects.

Those at highest risk of stopping before the recommended five years were those still experiencing side-effects from chemo or radiotherapy.  As a result of the side effects, 10% of the women had stopped taking the drug within two years. A further 26% had stopped by four years.

- More at the above link - 

Hot Flashes

I've already written here on my blog about the hot flashes.  They can be pretty severe; far worse than my menopausal hot flashes.  Luckily, it's cold outside & I keep a nice size crack in the window.  The kids come into my room & complain about the cold.  Once in a while I feel the cold & am amazed at my tolerance level for it.  I don't know how I'll handle the heat & humidity of next summer.   It does worry me.  Yet, something else worries me.  It seems the hot flashes are less frequent.  The doc says having them is a sign the drug is working; I'm petrified having less frequent hot flashes means the drug isn't as effective.

Pain

 

I was in an accident about 10 years ago that left me in constant pain.  I decided to stop taking the narcotics & just use Ibuprofen & Baclofen (for spasms).  All this accomplished was drastic weight gain, & becoming immobile.  I could not function due to the pain.  I had a stool in the kitchen just so I could sit to cook, do dishes, or even to make a cup of coffee.  After walking a few feet, I'd double over in pain.  Literally - and worse than this cartoon lady.  

Well, I am back on Vicoden, and can now function with limits.  I think there are those who make people like me feel uncomfortable about taking narcotics, but they are available for a reason, & if you need it, then you should take it.  Don't ruin your quality of life over some perceived guilt of addiction.  

My oncologist prescribed an aromatase inhibitor for my treatment of estrogen-sensitive breast cancer.  Remember I am post-menopausal, & have metastatic breast cancer.  The surgeon can't safely remove my baseball size tumor, & since my cancer is incurable, the doc canceled the originally prescribed chemotherapy & started me on Arimedex  (Anastrozole).

Today I take my 77th dose of Arimedex (yea, I keep track of each tablet, just so I don't forget to take this tiny life saving pill!) .  Besides those horrible hot flashes, I am in a lot of pain.  Lots of throbbing joint pain.  Even with Ibuprofen & Vicoden!  If I was feeling terrible pain while taking Vicoden, then good grief, how bad is this pain?  It's pretty bad.  I increased my Vicoden which helped.  My primary care physician increased my monthly quantity, as well as increasing the prescription to extra strength.  It has helped.  I also am making sure I take the Baclofen on a regular basis, & that seems to help, too.

Education

It seems to me that oncologists need to listen to their patients, & offer the pain medications if their patient's are suffering.  This drug is a life saving medication.  Which is worse?  A possible addiction or death?  My primary care doc understood.  She & my oncologist said pain was the primary complaint with this drug.

Maybe, too, an explanation on what to expect from this drug should be a part of the patient's treatment.  For me, a cold pack on the back of my neck helps, along with chewing on ice chips, and of course the nice crack in the wintery window.

So ...

 

My latest issue are the hives.  I'm not sure if it's the drug or something else, but the hives are itchy, in various places, and it's no fun!  

Anyway, the above article saddens me.  I don't know if the women who stopped taking their medication had other options; I sure hope so.  I can't imagine stopping a life-saving medication when the other drugs out there can be just as bad, if not worse.  

Hugs to all of us doing our best to stay alive.

My adventure continues ...

I have a confession to make.  I've never really paid much attention to breast cancer.  As a woman, I'm sorry to admit my avoidance toward being more aware.  I wasn't entirely ignorant, and I did/do care.  I just didn't understand it as well as my contemporaries.   

When I was diagnosed with metastatic breast cancer, my friends instantly understood the degree of trouble I was in before I did.  

I didn't expect to start chemotherapy so soon after diagnosis, but the surgeon determined the tumor, about the size of a baseball, was too large to safely remove. even as a mastectomy.  He recommended neoadjuvant therapy to hopefully shrink the tumor so later he could safely remove the breast, or better yet, just remove the tumor.

I had to immediately psyche and prepare myself to accept that dreaded toxic medication to be pumped into my veins.  If it meant a cure & a longer life, I was willing to hang my head over the toilet, nauseously puking my ever lovin' brains out.   I so dreaded and so feared the chemo, the sick stomach & the vomiting.  I cannot articulate how much all this troubled and scared me.  

So here I was, all prepared for my first bout of chemo and figuring I'd be bald by Halloween. I ordered headscarves and knitted caps for my future bald head from eBay.  My friend,  Terri, joked and encouraged me to be either lollipop'd Kojak;  Sinead O'Conner;  kick-ass Natalie Portman (V for Vendetta); or get my ass kicked & be Charlie Brown.  I was on my adventure, and the first stop was Halloween.

The day before my first chemo appointment, my oncologist  canceled the chemo & said we needed to talk.  She had the results from the Bone Scan & CT Scan that were performed just a few days before.

This is where everything went off the rails for me.  My doctor explained the cancer isn't just confined to the breast, but has traveled to my lungs.    It had metastasized.  It is incurable.  This changes everything, I'm told.  The chemotherapy is out - for now, but there is a drug that I will have to take the rest of my life.  This drug is used only in post-menopausal women, & it should shrink the tumor.

My reaction?  I wanted to shout "Yippee!"  No chemo for me!  No tummy aches! No vomiting over the toilet!  I remember the funny look the doctor had when I said this was a blessing in disguise.  Pills over chemo.  Yep, that was good news to me.

It wasn't until the drive home that it began to hit me, though, to be honest, it took longer than that to believe it.  

I am dying, and there's no cure.  My doctor told me during my last visit that she doesn't know how long I have.  She told me of a patient of hers that is 70 who asked her recently, as well, and the only answer the doc says she can give, is when the drugs stop working.

I'm not so sure why I wrote all this, most of it has already been blogged.  It could be that I'm trying to get a better grasp.  Right now I feel like I'm cheating, even though I'm not.  I know I am very sick, but refuse to accept it.  There is a difference between being positive and refusing reality.  I'm not so sure where I'm at, and to tell the truth, I'm not so sure I have to know. 

I recently blogged that I believe the tumor is shrinking.  I think that is wonderful news.  I'm hoping it's shrinking the cancer that spread into my lungs, too.  

There seems to be some good news on my cancer drug, anastrozole, (Arimidex). 

I confessed at the beginning of this post my ignorance to breast cancer.   But there's a lot of information out there on the web.  My doctor told me to be wary of what I read; and that she felt comfortable if I stuck with the Mayo Clinic and the National Cancer Institute. Below, from the National Cancer Institute I thought I'd add information on a couple of the tests one may need after the initial diagnosis.  I've included only one stage, and that is Stage IV.

Don't get me started about the hot hot flashes.  Oy ...

Staging

If the biopsy shows that you have breast cancer, your doctor needs to learn the extent (stage) of the disease to help you choose the best treatment. The stage is based on the size of the cancer, whether the cancer has invaded nearby tissues, and whether the cancer has spread to other parts of the body.

Staging may involve blood tests and other tests:

• Bone scan: The doctor injects a small amount of a radioactive substance into a blood vessel. It travels through the bloodstream and collects in the bones. A machine called a scanner detects and measures the radiation. The scanner makes pictures of the bones. The pictures may show cancer that has spread to the bones.
• CT scan: Doctors sometimes use CT scans to look for breast cancer that has spread to the liver or lungs. An x-ray machine linked to a computer takes a series of detailed pictures of your chest or abdomen. You may receive contrast material by injection into a blood vessel in your arm or hand. The contrast material makes abnormal areas easier to see.
• Lymph node biopsy: The stage often is not known until after surgery to remove the tumor in your breast and one or more lymph nodes under your arm. Surgeons use a method called sentinel lymph node biopsy

These tests can show whether the cancer has spread and, if so, to what parts of your body. When breast cancer spreads, cancer cells are often found in lymph nodes under the arm (axillary lymph nodes). Also, breast cancer can spread to almost any other part of the body, such as the bones, liver, lungs, and brain.

When breast cancer spreads from its original place to another part of the body, the new tumor has the same kind of abnormal cells and the same name as the primary (original) tumor. For example, if breast cancer spreads to the bones, the cancer cells in the bones are actually breast cancer cells. The disease is metastatic breast cancer, not bone cancer. For that reason, it is treated as breast cancer, not bone cancer. Doctors call the new tumor "distant" or metastatic disease.

• Stage IV is distant metastatic cancer. The cancer has spread to other parts of the body, such as the bones or liver.
• Recurrent cancer is cancer that has come back after a period of time when it could not be detected. Even when the cancer seems to be completely destroyed, the disease sometimes returns because undetected cancer cells remained somewhere in your body after treatment. It may return in the breast or chest wall. Or it may return in any other part of the body, such as the bones, liver, lungs, or brain.