Thursday, November 26, 2015

Downregulator

I love that word! It would be a cool band name! Anyway, my new drug is an estrogen receptor downregulator or ERD. It's given to postmenopausal women with metastatic breast cancer when the cancer has progressed after other drugs stop working (my Anastrozole).

Faslodex

Generic name: Fulvestrant

Chemocare.com uses generic names in all descriptions of drugs. Faslodex is the trade name for Fulvestrant. In some cases, health care professionals may use the trade name Faslodex when referring to the generic drug name Fulvestrant.

Drug type:  Faslodex is a hormone therapy.  It fights cancer as an "estrogen receptor downregulator."  (For more detail see "How this drug works," below).

What this drug is used for:

To treat estrogen receptor positive metastatic breast cancer (cancer that has spread) in postmenopausal women, with disease progression following antiestrogen therapy.

Note:  If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.

How this drug is given:

As an injection into the muscle (intramuscular, IM).Fulvestrant is usually given as a once a month injection.  Your doctor will determine any variations to this dosing or schedule.

Side effects: 
Important things to remember about the side effects of fulvestrant:

Most people do not experience all of the side effects listed.Side effects are often predictable in terms of their onset and duration. Side effects are almost always reversible and will go away after treatment is complete.There are many options to help minimize or prevent side effects.There is no relationship between the presence or severity of side effects and the effectiveness of the medication.

The following side effects are common (occurring in greater than 30%) for patients taking fulvestrant:

None occurring greater than 30%

These side effects are less common side effects (occurring in about 10-29%) of patients receiving fulvestrant:

Nausea and vomiting  Weakness Hot flashes (see sexuality)Sore throat (pharyngitis, see cold symptoms)Headache Bone pain Constipation Diarrhea Abdominal pain Injection site reaction with mild temporary pain and swelling at the site.Cough 

Other:

Vaginal bleeding reported infrequently (less than 1%), mainly in patients during the first 6 weeks after changing from existing hormonal therapy to treatment with fulvestrant.  If bleeding persists contact your health care provider.A rare (less than 1%), but serious side effect of fulvestrant is blood clots, including deep vein thrombosis (DVT) and pulmonary embolus. You should seek emergency help and notify your health care provider immediately if you develop sudden chest pain and shortness of breath.  Notify your health care provider within 24 hours if you notice that one leg is swollen, red, painful and/or warm to touch and the other is not.

Not all side effects are listed above. Some that are rare (occurring in less than 10% of patients) are not listed here.  However, you should always inform your health care provider if you experience any unusual symptoms.

When to contact your doctor or health care provider:

Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:

Sudden shortness of breath and/or chest pain

The following symptoms require medical attention, but are not an emergency.  Contact your health care provider within 24 hours of noticing any of the following:

Swelling, redness and/or pain in one leg or arm and not the otherExcessive vaginal discharge or bleeding, menstrual (period) pain or irregularitiesNausea (interferes with ability to eat and unrelieved with prescribed medication)Diarrhea (4-6 episodes in a 24-hour period)Constipation unrelieved by laxative use

Always inform your health care provider if you experience any unusual symptoms.

Precautions: 

Before starting fulvestrant treatment, make sure you tell your doctor about any other medications you are taking (including prescription, over-the-counter, vitamins, herbal remedies, etc.).   Do not take aspirin, or products containing aspirin unless your doctor specifically permits this.Let your health care professional know if you have ever had a blood clot that required medical treatment.Inform your health care professional if you are pregnant or may be pregnant prior to starting this treatment. Pregnancy category D (fulvestrant may be hazardous to the fetus.  Women who are pregnant or become pregnant must be advised of the potential hazard to the fetus).For both men and women: Do not conceive a child (get pregnant) while taking fulvestrant. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant or conceive a child after therapy.Do not breast feed while taking this medication.

Self-care tips:

If you are experiencing hot flashes, wearing light clothing, staying in a cool environment, and putting cool cloths on your head may reduce symptoms. Consult you health care provider if these worsen, or become intolerableThis medication causes little nausea.  But if you should experience nausea, take anti-nausea medications as prescribed by your doctor, and eat small frequent meals.  Sucking on lozenges and chewing gum may also help. Avoid sun exposure.  Wear SPF 15 (or higher) sunblock and protective clothing.In general, drinking alcoholic beverages should be kept to a minimum or avoided completely.  You should discuss this with your doctor.Get plenty of rest. Maintain good nutrition.If you experience symptoms or side effects, be sure to discuss them with your health care team.  They can prescribe medications and/or offer other suggestions that are effective in managing such problems.

Monitoring and testing: 

You will be checked regularly by your health care professional while you are taking fulvestrant, to monitor side effects and check your response to therapy.  Periodic blood work to monitor your complete blood count (CBC) as well as the function of other organs (such as your kidneys and liver) will also be ordered by your doctor.   

How this drug works:

Hormones are chemical substances that are produced by glands in the body, which enter the bloodstream and cause effects in other tissues.  For example, the hormone testosterone made in the testicles and is responsible for male characteristics such as deepening voice and increased body hair.  The use of hormone therapy to treat cancer is based on the observation that receptors for specific hormones that are needed for cell growth are on the surface of some tumor cells.  Hormone therapies work by stopping the production of a certain hormone, blocking hormone receptors, or substituting chemically similar agents for the active hormone, which cannot be used by the tumor cell.  The different types of hormone therapies are categorized by their function and/or the type of hormone that is affected.

Many breast cancers have estrogen receptors, and the growth of these tumors can be stimulated by estrogen. Fulvestrant is an estrogen receptor downregulator, this means it binds to the estrogen receptor site in competition with estrogen in the body.  Once it binds to the site it causes the receptors to break down, thereby preventing normal cellular response to estrogen.
 

http://chemocare.com/chemotherapy/drug-info/faslodex.aspx

Surgery today (11/25/15)

It went well today. Lots of anti nausea drugs and voila! No nausea!
They used ultrasound to place a radioactive "seed":

This information explains your breast seed localization procedure at Memorial Sloan Kettering (MSK).

Breast seed localization is a procedure in which a tiny metal seed, about the size of a small sesame seed, is placed into abnormal breast tissue. The implanted seed contains a small amount of radiation. This helps your surgeon find the area of abnormal tissue during surgery when it is too small to be seen or felt by hand. The seed will stay in your body until it is taken out during your surgery.

Then they started the IV and got me ready for surgery. The IV placed in my hand blew up on the way to the surgery suite and I had a lump of fluid on my wrist. They tried another vein in my hand and one on my inner forearm, no luck. They ended up using my port. Dr always asks what kind of music I want to listen to in surgery. My sis-in-law said 80s rock so that's what I got! Men Without Hats Safety Dance and Joan Jett I Love Rock n Roll. Sweet! Then...
Oxygen mask on, drugs in, off to lala land.

Incision is about 2 inches long and I have another JP drain. This drain I'm allowed to take out myself because Dr know it won't bother me to do so and its not very long.

No pain yet. Dr put a numbing blocker in there that is/was supposed to last for 8 hours.

More later...

Tuesday, November 24, 2015

Faslodex

Went to cancer center to get my first injection of the drug that will take the place of Anastrazole. More about Faslodex later. 
Went into a room in the "chemo area". I usually sit out with the rest of the patients when I go for a port flush. The nurse ordered the drugs from the pharmacy. There were 2 syringes of 250ml each. Nurse told me to bend the leg slightly on the side she was injecting. It goes in the muscle at hip level in the butt. One syringe on each side: 500mls total. The poke wasn't so bad but the stuff going in was painful. It has to be injected slowly and it hurts. Like a deep hurt. Like I felt woozy for a moment. Then the other side. Ugh! I get it again in 2 weeks then 2 weeks after that and then once a month. I'll be taking it as long as it keeps the cancer under control. I can deal with the injections as long as it works! I'm worried about insurance/Medicaid/Medicare covering the cost. 


And gotta have a funny one:

Friday, November 20, 2015

More radiation?

Team meeting 11/19/15

Met with breast surgeon, oncologist, and a couple of nurses or interns yesterday. Happy to hear it's only in that lymph node! Hasn't spread beyond that! Yay! I'm scheduled for surgery on 11/25 and start a new med on 11/24. The med is an  estrogen blocker like the anastrazole but hopefully will work better. The downside is that I'll get injections in my butt once a month with a loading dose every 2 weeks to start. Not too bad if it keeps the cancer at bay.


Wednesday, November 18, 2015

PET scan today

Typical PET scan today. Ate low carb diet yesterday. Went in got the radioactive glucose injection; waited a hour and a half; got scanned; went home. BUT the nurse who accessed my port forgot to disinfect the skin over the port. BIG NO NO! He came back in and said he'd call my doc to see if I needed a dose of antibiotics. Dr said to just keep an eye on it. Nurse said he felt like he was going to throw up. I felt badly for him.
Anything lurking on my skin had a direct line into my blood stream.

Thinking about joining the message boards on
breastcancer.org just to have someone to chat with when I'm worried or can't sleep. It helps to write in this blog but feedback is nice too.

Tomorrow I find out my results (hopefully) and will know what the plan is going to be.

Monday, November 16, 2015

Journal Entry Sept. 30, 2012

Good day. Very tired in afternoon.

Hair started to come out in shower in pm.

Journal Entry Sept. 29, 2012

Good day but got extremely tired in the afternoon. Went to Binder Park zoo & could hardly stay on my feet.
Good appetite.

Journal Entry Sept. 28, 2012

Good day! No issues other than I was pretty tired after driving all over & walking dogs.
Armpit/incision site isn't too painful. Chest isn't as itchy where port bandaid was.
No metallic taste.
No backache.
Not too much dry mouth.
No nausea.
Appetite good.

3 bumps on head now.

Saturday, November 14, 2015

Journal Entry Sept. 27, 2012

(This sounds familiar! Ha ha!)

11:03pm
Rather painful procedure today. They did an ultrasound of my right armpit then the Dr. came in and did a sterile biopsy of the 2 largest lymph nodes. He used US to guide the biopsy punch and it was a spring-loaded thingy that felt like someone kicked me in the armpit. Sore tonight, 1/4 inch or so incision just to the right of my port.

Noticed 2 bumps on my head.

Good day except for hospital visit.

Friday, November 13, 2015

Thursday, November 12, 2015

"... and drank really dumb things like Zima."


LOVE HURTS

My heart was first broken 35 years ago and it happened again yesterday. Both times sucked the same.


The first time I had my heart broken was in 1980. The last time was yesterday. I've been sitting here trying to decide if they feel any different. They kind of don't.

I was 15 when I finally succumbed to Jeff's charms. One night at the grocery store, my mom and I were in the meat section. Do you remember how they'd divide the kinds of meat, and inexplicably decorated those dividers with something that looked like plastic parsley?

It's so strange, the things you remember. I was staring at the plastic parsley when it hit me hard and heavy that I was in love with Jeff. I borrowed a dime from mom, rushed to the front of the store and called him from a pay phone. This whole story is kind of ironic because he grew up to be a vegetarian.

Anyway, we had three weeks of bliss, Jeff and I. For the first time, I felt that astonishing giddiness of what it's like to love someone, and I couldn't stop sighing with happiness.

Until he stopped calling me.

When I finally got up my nerve and called him, he said I was a flake and he didn't like me anymore. It took more than 30 years for it to finally dawn on me that he was the flake.

RELATED: Shacking Up at 49

Just as I'd been unprepared to feel as wonderful as I had, I had no idea how completely awful I could feel. Mornings were the worst. I'd wake up with the most crushing sense of doom. I couldn't eat, everything made me cry and I had no idea if I'd ever snap out of it. I both lived for and dreaded seeing him at school.

I'm sorry to tell you that there were also a lot of dramatic diary entries that started off with "Words can't express …" I was a regular Sylvia Plath back then.

And now here I am, 35 years later, and words can't express how awful I feel again, although you know I'm going to try. Long story short, heartbreak has no expiration date.

RELATED: Separately, Happily Together Ever After

I wasn't shopping for meat when I fell in love with Ned, but fall in love I did—ridiculously so. I found myself gazing at him when he spoke. At the movies, I'd lean in close so I could smell him for the whole two hours. I knew I'd love him till the day I died.

Four years later, I've realized it's not going to work out.

As we all know, there are lots of things that feel bad in this life. Biting the inside of your mouth. Finding out you made a really dumb mistake at work. But those things pale in comparison to when someone has become your sun and your stars and the crickets and all the sweet blooms that scent the night, and then you discover that, to them, you were as disposable as a paper plate.

That's how I felt when Jeff called me a flake in 1980, and that's how I feel now with Ned. It's the same sense of doom, the familiar crushing sadness that greets me every morning and I still worry that I'll never snap out of it. But at least this time I know what to do.

I know to sit still, and let the rotten wash over me, and after I've felt every last moment of the exquisite agony of missing someone I loved, I know I'll start to feel better again.

When I was 15, I tried beer and playing Queen as loud as I could and kissing other boys to escape the feeling of heartbreak, and nothing worked. So this time, I'll wait. Ned can't be replaced by a cute stranger or a shot of tequila. And I don't want him to be. The pain of losing him is the price I'm willing to pay for the joy of having known him. I know that these feelings won't kill me. But running away from them might.

Whenever I've run from my feelings in the past, I met the wrong people, ate horrible food and drank really dumb things like Zima. The worst hair mistakes I've ever made were all in the name of running away.

So, yes, 15-year-old self, it's true that this feels horrible and that it's hard to imagine ever smiling again. But you will. And you will, too, 50-year-old self. If you stay present and honor each stupid, awful feeling you have, you'll enjoy all the sweet blooms of the night again.

Biopsy and Primary care appt 11/11/15

Went in for biopsy at 9:15. It wasn't too bad. The lidocaine is the worst part. My skin in that area is numb so I didn't feel the needle but felt the lidocaine as he injected it. That always makes me want to punch someone. Ha ha! No, really!
Doc used the spring loaded biopsy punch but it was smaller than I've had before so it didn't hurt.
Results in 3-5 days. Waiting...

PC appt was just for a physical. Got a flu shot. 
My reading choices in the room:


Saturday, November 7, 2015

Hilarious!

Appointment Nov. 5


I had an appointment with my breast surgeon on Wed. Just a survivorship follow up kind of thing. She asked if I had felt any new lumps. I only then remembered a lump I had felt below my right arm pit. I felt it there several months ago because I was having some pain in that area. She felt it and sent me for an ultrasound. US doctor said he wasn't sure what it was so I'm scheduled for a biopsy on Nov. 11. Hopefully it's just a normal lymph node. Not thrilled about the biopsy because those punch things they use to get the sample really hurt.

The gowns at the breast center actually fit!
Waiting for US.


My lovely view while waiting for results. Almost took a nap. Quiet in there.

Wednesday, November 4, 2015

10 Things...

10 Things I Wish I'd Known About Life After Cancer - http://huff.to/1MEz2Jp

Monday, November 2, 2015

Lab work

Went for labs today for my upcoming PC appt next week. Curious to see results since I just got over a cold. I'm back to feeling wiped out so I think the hemoglobin will be low. 
Hiked 5+ miles yesterday thru the woods (prickery vines, mud, swampy areas). Today I'm sore and exhausted. I hate that it takes days to recover from fun.