Sixty-four people came to our Seattle Die In yesterday - representing the 64 Washingtonians who die of metastatic breast cancer every month. Here are some photos Rik took.
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Dec 26, 2016
Dec 19, 2016
Metastatic breast cancer awareness day
Yes, out of all of Pinktober and the entire year, they give us ONE DAY. In honor of that one day, I want to quote from my friend Mandi, author of the blog Darn Good Lemonade
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5 Things Not to Say to Someone With Metastatic Breast Cancer
Posted By Mandi on Oct 13, 2015 | 1 Comment
In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:
1. When will you be done with treatment?
The answer is never. We will be in treatment until we die. Even if the magical NED (no evidence of disease) status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.
2. I thought breast cancer had a cure?
You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?
3. But you look healthy?
When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.
4. But you got the “good cancer?”
HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?
5. Men don’t have breasts, they can’t get breast cancer?
Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.
For metastatic breast cancer awareness day, I beg you to share a story of someone you love/loved that has been impacted by stage IV breast cancer, share facts, share what it is. Share that we need metastatic breast cancer research. SHARE! <3 Also, if you have metastatic breast cancer – what did I miss? Add in the comments.
Jill's news:
I saw Dr G today and Monday's CT was "not favorable." I have new mets in my liver and lungs.The lung mets have come and gone over the years and are particularly tiny (5 mm each), so I guess I'm not going to worry about them much.
Dr G wants to increase my dose of carboplatin and add Alimta (pemetrexed). Nurse Jacque said these are given once every three weeks, with vitamin B12 for the Alimta. That shot had a very tiny needle. I'll know more once Premera has approved these chemos. Alimta crosses the blood-brain barrier and has low toxicity, so it's very appealing. We also discussed ixabepilone, cytoxan and a new therapy called abemaciclib.
He'll get me in to see a radiation oncologist to treat my skin mets and enlarged lymph node. Dr G will also try to get me in to see Dr Julie Gralow at UW for a second opinion. She's a widely renowned oncologist who travels around the world and is most likely to know about new research. But since she travels so much, it may be a long time before I get in to see her.
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Dec 12, 2016
Chemo-cation
I finished cycle 12 of Xeloda with an increase in Hand-Foot Syndrome but only at the very end of the cycle. I lost three layers of skin on my thumbs and first fingers but they're healing nicely. My tumor markers are still stable!
Dr G said, Oh, I'm hurting you! I reassured him that I was coping but really I think I am getting close to the end of my Xeloda tolerance.
The dentist says my sore tongue comes from the same side effect. Basically the skin covering my tongue has Hand-Foot Syndrome (!). She could hardly believe that I still have taste buds.
My new opthalmalogist/surgeon says that 18 months of Abraxane likely caused the cataracts in both eyes. I am having the surgery in January, so I get a three week chemo-cation (plus the week recovering from the first surgery).
Between eye surgeries I'll have one more Xeloda (round 13) and then we will re-evaluate during my second three week chemo-cation. Dr G wants to add Afinitor to the mix (Xeloda, Avaston, Aromasin, Aredia). I had Afinitor before without much luck and plenty of side effects, but I may be close to the end of what I can tolerate from Xeloda. However, Xeloda has me stable and I do tolerate pain well. (I am sad that I had to learn this about myself, but it's one of the things cancer taught me.) There are plenty more drugs out there plus anything new that comes out of the recent ASCO conference.
Update Monday
I am recovering bit by bit.
The weekend was full of antibiotics and friends. Today I learned that I most likely have two different infections. One is coliform, the bacteria that can cause E. coli. You hear about kids eating hamburgers filled with fecal bacteria. But we all harbor some kind of E. coli and it takes just the right thing to trigger your own body's stuff. I think I got that right.
Dr infectious disease named the second infection in the early morning and I can't remember it now. It had something to do with water/blood bacteria.
I've had more IV antibiotics today but if Friday's and Saturday's cultures come back growing the same thing as Thursday's, I can move to an oral antibiotic and go home. So I hope to be here until tomorrow. As you know, nothing is certain when you're inpatient at the hospital.
Dec 6, 2016
Therapists are not like oncologists.
Therapists are not like oncologists.
Imagine an oncologist who has no idea what the latest treatment is. Imagine now that they are trying to cover their butts. "You have cancer, but I have something that works in my patients." "Something that works in your patients?" Even in your distress something seems odd about that statement. "Does it work in all patients or just in yours?" Its one of those questions you think twice about asking an MD because it smacks of sarcasm and hints a possible incompetence. But it is exactly the most rational question.
Of course, of an oncologist you'd not have to ask this question because oncologists are required by law to use the most effective treatment. If they do not do the latest and greatest they can get sued. Into oblivion.
People die of cancer. People generally don't die of bad therapy.
Now imagine your therapists says this... "You've had a stroke but I have something that works in my patients." "Does it work in all patients or just in yours?" There are 2 possible answers:
1. I have a lot of clinical experience, and in my experience it works.
2. Actually, its not ME saying it works in MY patients, but the research says it works in patients with your sequalae (symptoms).
I feel safer with #2.
#1 could have an unspoken "...but I've never really collected data or analyzed data or compared it to a control group or blinded myself during your measurement, or done anything else that science does to make sure that my data is "clean"."
"Does it work in all patients or just in yours?" is really the question, "Is there research that says it works?"
Encourage therapists to have a look at their diploma. It'll say, clear as day "Associate's of applied SCIENCE," "Bachelors of SCIENCE," "Masters of SCIENCE," and so on. The the notion that they base treatment solely on clinical experience is dangerous. One of the biggest determinants of recovery is the therapist sitting in front of you. Do yourself a favor, and do them a favor: Call them on the evidence.