Zoladex: Astra Zenica’s Snake Oil?

Pace told me something today that piled on another layer of anger and frustration. Like anyone going through a prolonged health crisis needs another one! The Zoladex is not working, her period started tonight. If you pay $439 for a prescription, you'd expect it to work. Right?

I know I followed all of the instructions on the Zoladex to the letter, I read them three times to be sure, listened to the condescending tone of the pharmacist in training as he dicuseed what to do. I pinched the skin and stuck Pace the heavy gage needle (look at a small and a large paper clip and think of a thickness between the two and about 1.5 inches long) straight to the hilt at a 30 degree angle, over 2 inches below below the horizontal line across belly buutton as Pace gasped in pain, pushed the plunger as far as it would go. When I pulled the needle the protective sheath snapped shut over the needle. According to the documentation it will only do this if the plunger is pushed to its maximum to deliver the Zolodex.
Well Pace’s ovaries have fired up again. (She warned me she was fertile.) And nevertheless the doctors have been telling us we really need to induce menopause for Pace’s safety.

We’ll get more answers next week after Pace talks to the oncology nurse managing Pace’s clinical study.

BRCA 1, Pace and cancer research

The geneticists from Sunnybrook are going to meet Pace as a part of a study on women who've had Breast Cancer and are carrying a variant on the BRCA1 genetic sequence.

When individuals carry a mutation in either BRCA1 or BRCA2, they are at an increased risk of being diagnosed with breast or ovarian cancer at some point in their lives.

In 1994, two breast cancer susceptibility genes were identified: BRCA1 on chromosome 17 and BRCA2 on chromosome 13. In her breast cancer blog, Libby Znaimer called BRCA 2 "the Jewish gene."

Until recently, it was not clear what the function of these genes was, until studies on a related protein in yeast revealed their normal role: they participate in repairing radiation-induced breaks in double-stranded DNA.

It is thought that mutations in BRCA1 or BRCA2 might disable this mechanism, leading to more errors in DNA replication and ultimately to cancerous growth.

Which begs the question: just how did Pace get exposed to enough radiation to cause her breast cells DNA to mutate into cancer?

Image Source:http://www.cmu.edu/bio/research/genomics.shtml

Only one week left

A week from today is the last of Pace's radiotherapy treatments. Holey Moley!

I'm almost in a state of disbelief. I've had enough of cancer's grief.

I look forward to Pace and making plans and I moving on. I want to see more of Pace happy like this.

.

No, we did not drum naked in the primeval forest

It can be summed up in three words; Food , Friends and Fun, meaning plenty of hiking, football and ping pong for exercise off Muskoka Bob road.

The air was crisp, clean and smelled of green... wet leaves too. A boy's weekend of tall tales, football games of "beat the champ... to a pulp," and no, we did not drum naked in the primeveal forests of Muskoka.

I had my best sleep in weeks. Albeit punctuated by me waking up yelling from nightmares I couldn't remember.

It was great, no computer, no cell phone, no ABM card. Just off the grid for 2.5 days.

Thanks Marc for kicking my ass and keeping me motivated on the bush crash. Finding the lost lake was really beautiful and worth the effort. I hate when your right! (Or when someone points out to me I'm wrong, but I digress.)

James, it was nice to meet you.

Neil thanks for the hospitality and change-up to my schedule. I've been feeling so thin as to be transparent lately. I had a great time and appreciate the respite.

Just when I start to feel sorry for myself along comes a reality check

So after my groaning about drug costs I came across this article that made me feel like a doofus. Going Broke To Stay Alive

https://www.marketwatch.com/story/millennial-cancer-survivors-are-going-broke-fighting-to-stay-alive-2019-02-28

Today's not a milestone, just a marker on the trip

A year ago today Pace had her TIA.

Just that thought sends my head spinning. I've found today difficult.

We'd only been moved in a week and the place was already 90% together. Far be it for Pace to let the place look like a bachelor pad.

It was going on 7:30 and we had not eaten since lunch. I'd made chicken pesto on rotini it was served and getting cold and still I had to corrall Pace to the table as well as the wee one and her Mom France, who was here to help with the unpacking and decorating,

"Pace! What are you doing"
"I coming"

She came around the corner about two minutes later and had to grab onto the door frame for support. She would have gone straight to the floor.

"Babe? You O.K?"
"I don't feel well"
"Sit down maybe your blood sugar is down."

She sat down and I got a glass of orange juice, it didn't help. Then she said started to look anxious and stammered out.

"Babe, I can't feel my left side."

The next 15 minutes was one of those slow motion eternity moments where you try to keep you head on as your life suddenly careens out of control. I got tele-health on the phone and they talked to Pace for a couple of minutes. Within five minutes of that call there were paramedics at the door.

I asked Francine to get the wee one into her room so she didn't have to see all the commotion with the paramedics.

They checked her out from head to toe and then the male paramedic took Pace's hands, held them out in front of her at sholder height and told Pace to keep them there. Her right arm stayed put. The left arm drifted off to the side and back down till it was motionless beside her body. I was really scared. We'd just been talking about how good it was to be having a new start and a new place.

"No, I thought, this can't be happening. There's no way I can manage getting Pace up and down the stairs, into the bath tub and all the other things if she's paralysed."

My head was spining. Then there's thinking about raising the wee one. We'd manage, but...

The paramedics had her off to the hospital within minutes of that test. Pace couldn't walk properly, her gait was off and it was as though her left side couldn't support her. The paramedics half walked, half carried her to the ambulance.

"Oh God please don't let her be paralysed." I prayed; and my prayer was answered. I think the TIA was Pace's body sending a warning about the cancer. When all is said and done God writes straight with crooked lines.

A gift to cleanse, detoxify and energize

Susan came by today and took Pace out for some “girl-time.” Vianne and I curled up for an afternoon nap.

Susan had bought some Flor-Essence for Pace. It is an herbal tonic that is intended to Cleanse, Detoxify, and Energize. It’s a little more reasonable than Zoladex at $70.00 per liter of the concentrate.

It is used to help with the effects of chemotherapy and radiotherapy in Mexico and the Russians have been exploring it’s properties with those that are living with the after effets of Chernobyl. One of the herbs contains high levels of iodine. Keeping our iodine levels high is a method to keep strontium 90 for being absorbed by our bodies.

The herbs and a link to their medicinal properties are below.

Red Clover

Blessed Thistle

Watercress

Kelp

Burdock Root

Sheep Sorrel

Slippery Elm Bark

Turkish Rhubarb Root

Pace has not told me what it tastes like. I have a feeling it's like Buckleys.

$115,739.47 per kilo!

Pierre the wee one and I did the errands this morning. The last trip was to the pharmacy to pick up the Zoladex.

Sometimes I get frustrated with the way folks in the medical profession patronize me. Today, Yannik the “apprentice pharmacist” asked if I understood the meaning of subcutaneous injection. When I said yes I did, he sped up into a rapid fire explanation of that type of injection, of the drug, its side effects and to be sure that I called at least three work days before Pace needs a refill.

“We don’t keep drugs like this one in stock.” Yannick said.
“I’m not surprised it’s expensive”
“You know that three work day’s doesn’t include weekends?”
I bit my tongue, hard before asking. “Can I have the drug information sheet please.”
“But I just told you about it.”
I bit my tongue, harder and gestured my best Gallic shrug

Zoladex is an AstraZeneca medical consumable. It is prescribed in the case of cancer of the breast and prostate, endometriosis or removal of the endometrial sac. It can only be prescribed for two years as it is too concentrated and could cause other health issues. How reassuring is that? Then there's the brutal website.

It’s available in two types, one every 28 days or one every 3 months, the monthly costs $440.00 for 3.8mg, the quarterly injection is $1,500.00. Yes, I know there are research costs but yikkes! That equals a street price of $115,739.47 per kilo ($52,608.85 per lb.)

No wonder Dr. Rami figured that we’d opt for the Ovariectomy sooner than later.

Things to be thankful for

It’s another Friday afternoon train trip and I’m thinking of the things I have to be thankful for. The last two years seem to have been one trial by ordeal after another but on the other hand I consider us to blessed and lucky to have the love and support of friends and especially family. Yesterday was one of those great family moments.

Mom and Dad took my sister Maggie, her family and me out for her birthday dinner last night. The kids love eating at Mandarin and we had fun. The kids and I had fun grossing each other out by letting the cuttlefish tentacles dangle from between my teeth.

Maggie has been a great help; stepping in for babysitting and trying to just make life easier for Pace, Vianne and me.

Happy Birthday again Maggie. I wish you serenity, prosperity and health.

Now that the Breast Cnacer is treated it's time to prevent Ovarian Cancer

So Pace had a meeting today with Dr. Rami, her oncologist and he had a couple of things to discuss. On one hand, he thinks that she is recovering well but he is concerned about her reproductive system restarting again and releasing more estrogen into her system.

The Breast Cancer Pace had feeds on estrogen. Add to that to her 40% higher probability of Ovarian Cancer than the rest of the population and it’s apparent that we are not out of the woods yet. (Sigh!) So he wants her ovaries out and until that happens her menstrual cycle can not be allowed to start again. It's good to know the medical establishment wants Pace to live a long life with the wee one and I but there are times when it feels like they just love her as a case study.

Chemo-therapy has a side effect that I call “Chemo-pause.” It's real name is Chemical Menopause and it has all of the vestiges of the real deaal; hot flashes, phantom pain, night sweats and loss of libido. It’s a demonstration to the power of the chemotherapy drugs. The last course of those drugs stopped in July and she’s yet to have her menses.

To chemically induce menopause the normal prescription is for Tamoxifen. But dear reader as most people have observed, Pace is often the exception to the rule. Dr. Rami had to take her case to the tumor board because there is an increased chance of TIAs with Tamoxifen. The board has ruled against using tamoxifen and suggested that we use Zoladex.

Once she is well enough than Pace goes under the knife again to have an Ovasectomy. Dr. Rami said that due to the cost of Zoladex that we’ll probably do it sooner than later.

I feel the hands of the drug company are about to pick my pocket again.

Surprising news on women's beliefs about breast cancer

File this article under: what you don't know can be fatal.

• Only 15 percent of women who get Breast cancer have a family history
  
• More young white women than young black women get breast cancer
  
• Mortality rates for black women are 33% higher
  
• Black women just like Ashkenazi Jews have a higher rate of early onset breast cancer. Those with the gene have an 87 percent chance of getting breast cancer

The article sites the American Cancer Society's Cancer Facts & Figures as the promary source. It speaks to the social, racial, econcomic and geographical realities of cancer.

A husband and wife night out

Helene gave Pace a couple of Tickets to Cavalia. Les grandparents took care of Vianne and we took off for 24 hours as a couple.

Cavalia is truly one of the most creative events that I have seen in a long time. I highly recommend it.

We stayed at cool little hotel in Rosemere called Hotel le Rivage. This place is full of custom suites that are on the creative side.

Radiotherapy "Tattoos" - Caution Explicit Images

Usually, when someone needs to have radiotherapy the area that need treatment is carefully marked out using tiny tattoos. The radiotherapy machine uses these tattoos as markers to direct the radiation to only the part of the body that needs to be treated.

However in Pace's case they've mapped it out in purple marker. She says it takes about 35 minutes in the room for them to calibrate and program the machine. The the actual treatment takes about 10 minutes.

Pace asked me to take these pictures so you
could better understand the extent of the
radiation treatment.

One of the side effects of radiotherapy is that it burns the skin. Pace says after one week of radiotherpay her skin is already very sensitive. Considering she's as lilly white and sun sensitive as you can be I'm not really surprised but I am trying to be supportive. I just hope it doesn't take too long to heal because as you can see her skin is going to be burning in a lot of places.

You also have to be careful if you use a moisturizing or soothing cream in that you use to be sure you don't interfere with the transmission of the radiation to the target areas. There is a perscription cream, (another ca-ching for the drug company I'm sure) that is supposed to help.

I'll let you know about it in a later post.