The pink handgun and Seattle's Komen

I might be late in coming upon this controversy, but I couldn't resist sharing it, since it specifically mentions the Seattle affiliate of the Susan B Komen Foundation.

Susan G. Komen Foundation Says It Is Not Connected To Pink 'Hope' Handgun [UPDATE] 

WASHINGTON -- The Susan G. Komen Foundation has responded to reports Friday that it is affiliated with a handgun manufacturer selling a pink gun designed to promote breast cancer awareness, saying that it does not have a partnership with the manufacturer and has not received donations from it. 

Business Insider first reported Thursday that Discount Gun Sales was selling a 'Hope Edition' handgun and donating a portion of the proceeds to Komen, the largest breast cancer charity in the nation. Komen came under fire this week for cutting off funding for Planned Parenthood, before ultimately reversing course on Friday and stating that the family planning organization will remain eligible for grants. 

"Discount Gun Sales is proud to team up with the Susan B. Koman [sic] Foundation to offer the Walther P-22 Hope Edition in recognition of Breast Cancer Awareness Month. A portion of each P-22 Hope Edition will be donated to the Seattle Branch of the Susan G. Komen Foundation," read the description on the gun seller's website.

(Read the full article here.)

Ginger tea

I have become a (relative) expert in managing the moderate nausea I've experienced lately on the Vorinostat. Ginger beer for when I want a cold drink. Saltines or other crispy, salty things to eat -- pretzels, Tam Tams, and my favorite, La Panzanella's rosemary croccantini. (When I see them at Costco, three plastic sleeves per box, I grab as many as I can carry.) And because the lemon-ginger tea I like is too pricey when I want to drink multiple cups every day, now I've learned to make my own ginger tea.

I bought a large knob of fresh ginger, scrubbed it thoroughly and chopped it, peel and all, into very small dice. I brought a pot of water to boil, added the ginger, and let the whole thing simmer for 15 minutes. Then I turned off the heat and let it steep, covered, for an hour or more. I added honey to sweeten to my taste, and now have a very strong, ginger tisane* base. I pour some into a glass, add hot water, and it really settles my tummy. All for the price of fresh ginger and some honey (negligible when compared to the cost of a box of tea).

*What's a tisane? It's the French name for a drink made from an herbal or plant infusion.

Because that first bout of nausea was strong enough to warrant taking the drowsy-makig anti-nausea med, I changed the time I take the vorinistat from morning to bedtime. I don't have any nausea in that half hour before going to bed, but it does seem to hit me when I stand up in the morning.

I wake up hungry, eat breakfast, and rapidly develop some nausea. It's all rather moderate, but it still makes me want to lie down again. The ginger tea seems to help with the nausea.

Today it's raining and the wind is blowing, so I'm not really in the mood to walk the dog. (Sorry, Bobka.) He, of course, is already asleep on his dog bed in the other room. I don't think he wants to go for a walk in the rain either.

Feeling better

I was on the sofa for five hours yesterday. Between the nausea from the Vorinostat and the drowsiness from the anti-nausea med ondonsetron, I couldn't move. That eventually passed and at 4 PM I got up to prepare to usher for the touring production of Beauty And The Beast.

Now, I've seen many Broadway shows during my life, and I understand how learning the songs in advance increases anticipation to actually see the show. But this show is terrible! Truly, truly terrible -- maybe the worst thing I have ever seen on stage, and that says something, especially for a touring Broadway production. The story line is contrived, the additional songs from the animated film aren't so good, and even the sets don't quite live up to one's imagination after having seen the cartoon.  The costumes were lovely, and of course the actors gave it their all in their performances (the second one of the day).

But still -- in my opinion, it was terrible. I felt bad for anyone who paid actual money to see this.

On the flip side, I did feel well enough to go to the theatre. And this morning I got the word that I can change the time of day I take the Vorinostat. Starting today I will take the vorinistat at night before going to sleep. Even though this means eating another small meal (maybe PB&J on crackers?), if it gives me nausea, at least when the anti-nausea med kicks in, I can just get into bed and go to sleep.

I think this may be the best way to go. And at any rate, I only have to take the Vorinostat through Saturday.

Quick clinical trial update

I took the seventh dose of Vorinostat yesterday, and by late afternoon developed the first side effect of nausea and diarrhea. I took some anti nausea meds and ate dry crackers with ginger ale, which seemed to help, then took more lorazepam to sleep.

This morning's dose gave me nausea almost immediately. Since the drug is taken within 30 minutes of eating, I'm a little worried that vomiting might be next. I just took some ondonsetran (a more powerful anti-neusea med) and am headed for the couch to lie down.

Eat cake for breakfast

I always knew this was a good idea...

Israelis find that chocolate cake is good for you

Israeli scientists have concluded something that many chocaholics already knew – eating chocolate cake is the best way to start the day.

Research by Professor Daniela Jakubowicz of the Wolfson Medical Centre in Holon revealed that breakfasting on a meal high in carbohydrates and protein – but crucially with something sweet as well – helped keep people full throughout the day.

Prof Jakubowicz found that in a study of 193 clinically obese adults, those who enjoyed a balanced breakfast that included chocolate cake, as part of a wider calorie controlled diet, lost more weight than those who had a less calorific morning snack.

Trial update

On Monday I took the first dose of vorinistat, one of the two drugs that are part of the clinical trial. So far I think I have seen no ill effects, although I did have a nose bleed last night and again this morning. Bleeding from the nose or mouth could be a sign of low platelets, so if it continues to happen I will call the doctor's office to report it.

I also spoke with the radiologist in charge of the scan part of the trial. I had asked him to review the two scans taken at UW and SCCA and compare them to my previous PET scan from last November, taken at Minor and James. He said the scans may or may not show changes in my liver mets, due to having been taken by separate machines and read by different radiologists. And of course my tumor markers have continued to drop to almost in the normal range.

This trial expects to show that cancers which were originally estrogen positive, and then changed over the course of time to no longer be as estrogen positive, can be returned to their original sensitivity. The vorinistat, followed by an aromatase inhibitor, would presumably make this happen. Evidently I am exactly the kind of patient the SCCA docs were looking to enroll in the trial. My cancer was originally highly ER+/PR+ and has changed over these nine-plus years to be less so.

The scan part of the trial  measures the success of the drug combination. A regular FDG PET scan shows areas of cancer by their sensitivity to glucose. Tumors uptake glucose more quickly than other cells. Hence I fast before the scan, to have the least amount of glucose in my system. The FES PET scan measures the uptake of estrogen to tumors. No fasting needed!

This first set of scans acted as a baseline. If the drug combo works, the researchers expect to see some change in the tumors' uptake of estrogen, and perhaps a reduction in the size or number of tumors as well. So I will have another set of scans after taking the vorinistat for 14 days, and a third set of scans after taking the aromatase inhibitor for six weeks.

This is a lot of information to take in. Feel free to re-read my explanation. This is the best I understand the whole process.

The latest

While our iMac is in the shop for repair, friends G and D graciously loaned us a computer at least in part so that I'd be able to post to my blog. Here's what's been happening:

The iMac had a new video card installed in November after a random lightning strike hit our neighborhood, destroying our DSL modem in the process. The mac Store confirms that the video card they installed was faulty and they are replacing it. We squeezed in just barely before the end of the 90 day warranty period.

Friends who were celebrating their 30th wedding anniversary with a Jewish ceremony under the chuppah asked me to sing the seven blessings. Rabbi Borodin had already once asked me to learn this music, so I worked hard, and with coaching from the rabbi and my choir's director, learned everything. The wedding was last weekend and it appears I did a good job (minus a few clinkers)! Many people complimented me, but the best came from the groom. He stood under the chuppah with his eyes closed, and later told me it was to better appreciate my singing. This man is a trained singer and a compliment from someone with his level of musicality is especially meaningful to me. At the dinner afterwards the couple had asked several people to lead songs from their favorite Broadway shows. They asked me to lead "Matchmaker, Matchmaker" from Fiddler On The Roof. I confess that I didn't prepare for this other than to sing the song a couple of times, but I think everyone enjoyed singing along and the accompanist played in a good key for my voice. All in all, my soprano got a nice workout and my ego some lovely compliments. I feel like a singer now!

Rik has been off school for midwinter break and we have taken long walks with the dog every day. We went out with friends for a delicious lunch at Stopsky's Delicatessen on Mercer Island (chicken soup with kreplach, half a pastrami sandwich on rye with VERY spicy meat, half-sour pickles and a housemade cel-ray tonic). We also took our neighbors to dinner at El Camino, a Mexican restaurant in Fremont (house margaritas, some truly terrific mole sauce, fried plantain chips with guacamole and shared pecan tart). Our neighbor team teaches at the same school with Rik and has given Rik a ride many times this year.

Maybe we will get to see a movie, play some Scrabble, and/or read some good books, all favorite 'staycation" activities.

No computer

Our iMac is in the shop, so look for fewer posts this week.

I will start the vorinostat on Monday.

B's death a hoax

B wrote to my Club-Mets-BC online group yesterday to say she'd been the victim of a terrible hoax. Someone stole her computer and posted about her death to our list. B found out she was "dead" the next time she logged on. 


I am taking down my previous post about this issue.

Fake Avastin on the USA market

Authentic Avastin FDA-Approved for Use in the United States

SOUTH SAN FRANCISCO, Calif. -- February 14, 2012 -- Roche and Genentech have been informed that a counterfeit product, labeled as Avastin (bevacizumab), has been distributed in the United States. 

The counterfeit product is not safe or effective and should not be used. Chemical analyses of the counterfeit vials tested to date have confirmed the product does not contain the active ingredients for Avastin.

Click here to read more information and the complete press release, including lot numbers for the counterfeit product.

Please feel free to forward this information out to everyone you know.

Counterfeit product