Tuesday, November 15, 2016

Snake Oil and other cures

It came up that some people thought I was against hearing about any alternative treatments for cancer. This is not even remotely true. I am more than willing to hear about them. Chances are, I have already heard about them AND done my own independent research on them.

Last year there was a series that came out called The Truth About Cancer. It's release was very timely, I was in the hospital with a fever and respiratory infection. I was bored out of my mind and had nothing to do. So I watched it, every episode, some more than once. In it, I found some words of wisdom and some good options to explore. I found some common knowledge. Unfortunately, I also found lies, propaganda, blatant mistakes and unproven methods being touted as 100% successful options and there were some things being promoted that I would outright call 'snake-oil' solutions.

Happily I am not a "throw out the baby with the bathwater" type of person and I took the time to research those things that were applicable to me. I am also not a "believe all and drink the kool-aid" person so I also researched some of the broader reaching claims. I was also locked in an isolated hospital room, bored out my mind.

So yes, I am open to exploring other options. I already do/have tried some. However, I'm not locked in a hospital room right now. So I don't have hours and hours to fact check each claim. This means that if you present something to me as an option: DO THE RESEARCH FIRST!

When I say do the research, I don't mean check out only the information and links that are provided by those promoting it. Don't tell me that you heard of someone who heard of someone who tried something and was cured. Find independent support for the claims. Independent support is not some other website that offers affiliate links with claims that it works. The best independent support is a double blind study of significant size where people with like qualities were randomized into 2 groups and one given the 'cure' and the others not. That is the best independent support.

Can't be bothered to do that much work? Then let me give you a couple more guidelines if you want me to take the time to do that level of work.  If the answer is no to any of these, then thank you, but  no thank you.

Was any successful testing done on hormone negative breast cancers?

  • not all cancers are the same
  • not all breast cancers are the same

Are the only reports from those who either charge for the 'cure' or have a personal story with an affiliate link to the 'cure'?

  • find anything unbiased that does not profit it, otherwise it is highly suspicious

If you heard of a friend who was cured, first make sure it is your friend, not a friend of a friend or a neighbor and then are they willing to talk to me personally?

  • "A friend cured her cancer with cannabis oil" - oh great, so what kind of cancer, what combination of CBD/THC, what dose, how often, how long, how was the cancer diagnosed, how was the cure diagnosed? Without this information, I can't go forward. FYI, I have done a fair bit of research on this as an option and have tried it, without success. I will continue to use products with CBD and THC for managing symptoms. Meanwhile, there are many medical studies on right now, double blind testing on cannabis oils. It is being investigated because it has show to help SOME people. 

This is a good starting point.

If you want to watch the series the weekend of the 25th, please do, and use my link to register. In transparency, the above link is an affiliate one (anyone who registers gets one) and if 25 or more of my friends register, I get a $25 visa card.

If you do watch it, and want to discuss it, I'm up for that. But before you ask me "have you tried" based on what you saw in it, please, please, please research it yourself, not only from the places the series tells you to go, and not only positive results. Dead people can't write posts about how they tried it and failed, but look for families who posted less than successful stories also. Balance them out. Question all. Then if something seems amazing, please let me know (along with what research you've done to support it so I don't duplicate it).

One thing you may want to suggest that I have already squashed after much research:

  • laetrile/B17/amygdalin -  there is only an anecdotal support for this, and fantastic unproven stories of success by sites that make money from it's promotion. There have been scientific studies that showed it was not effective. If it had been effective "big pharma" would have marketed it already. Because it is a cyanide, incorrect dose can also cause death.   

Things I already do:

  • Meditate
  • Exercise (I am going to add rebounding because it seems a fun form of exercise) 
  • Green and a couple other recommended teas
  • Group therapy
  • Positive self talk
  • turmeric supplements

Things I am researching:

  • diet changes (angiogensis has the most studies with promise, although more towards preventing and less successful in treating)   

Sorry for the long post. I may still snap if someone posts an "They have a cure for cancer but are hiding it" meme. I may seem like I ignore or don't want your miracle cure. I would love a cure. Just please, make sure it's real before suggesting it.

Thursday, October 13, 2016

Metastatic Breast Cancer Awareness Day

Near the middle of Breast Cancer Awareness month falls October 13, Metastatic Breast Cancer Awareness Day. For all those that are aware of BC, not many are aware of metastatic BC. I know that until I actually had Breast Cancer, I didn't really pay much attention to it. I'm sorry for that. Metastatic Breast Cancer is the only form of Breast Cancer that kills. Breast Cancer contained in the breast and breast nodes, doesn't kill. It is when it spreads to the lungs, bones, kidney and brains that death is occurs. There is no cure for metastatic breast cancer. There are treatments that can sometimes prolong life but nothing so far there has been able to stop the spread, stop the death. The average life span from time of diagnosis of stage 4 (metastatic) to death is 18-24 months. 


MBC Time

Breast Cancer Awareness Month - Day 12

Did you know that the Canadian Breast Cancer Foundation has a different branch you can donate to where the funds go specifically towards metastatic breast cancer?  I didn't know, but now I do and so do you.

Remember, only once it's gone to metastatic state (stage 4) does breast cancer actually kill anyone. Prevention and treatment are great research options but the best way to save lives is to stop the deaths. CBCF Metestatic Fund

Tuesday, October 11, 2016

Breast Cancer Awareness Month - Day 11

It isn't over, until it is over, and even then, it might not be.
The first picture is June 2015 when I had my port inserted. It was removed in Dec 2015 with my mastectomy.

This picture is from Friday (Oct 6) when a new port went in because it is still not over. I am setting up for another chemo round, this time 6 months, then we will see. I suspect, this port will be with me for life. 

Monday, October 10, 2016

Breast Cancer Awareness Month - Day 7-10

Sorry, I really did mean to post daily, but hey, day 7 included out patient surgery, then there was post surgery recover, a long weekend and life with twins all mixed in.

I think for a 4 day awareness post, I want to maybe talk about some things breast cancer is not.

It is NOT the lucky cancer. Sorry. No cancer is lucky. If you have ever said that to someone, apologize. Cancer sucks.

It is NOT curable. Yes, there are some treatments for early stages (up to 3). For some people, these treatments can even make them NED (no evidence of disease, what was formally thought of as remission). But it is not cured. Over 30% of those who are 'successfully' treated in early stages will go on to a stage 4 (terminal) breast cancer diagnosis. And there is no telling when. It can be in a week, a year, a decade or even 20 years. So even if it seems gone, there is no way to know that it won't return, when or how. It's not cured, it's just hiding really, really well.

It is NOT a sexy cancer. Just because it includes the word breast, does not mean it is sexy. Stop buying into cheerleaders in pink bras.

It is NOT a Facebook game. Don't post your bra color or some made up ambiguous comment to "catch" others commenting then spread the game. Just don't. If you see someone do it and say it is in the name of breast cancer awareness then please reply back with a fact about breast cancer. That is how you raise awareness.

A mastectomy is not a "free boob job". It is a means to try to save or extend a life. It's not a simple surgery and it can have a lifetime negative impact on the person.

There is more I'm sure but for now, I am done and heading to sleep soon.  To those still following along, thanks!

Thursday, October 6, 2016

Breast Cancer Awareness Month - Day 6

Breast Cancer is not a single disease. Each sub type responds differently and to different medication and influence.

This link in this chart is still only the tip of the iceberg too....

Some Breast Cancer Types

Wednesday, October 5, 2016

Breast Cancer Awareness Month - Day 5

Here are some of my recommended books for kids with a mom with breast cancer. There are more, but these are those we've read that helped, at least a bit.

The Invisible String

Let My Colors Out

Mom Has Cancer

The Goodbye Cancer Garden

Our Mom Has Cancer

None of these books has given my kids (or me) a strong piece of mind, but they have opened conversations. I hope you never need them, but if you do, you now have some awareness of their existence.

Tuesday, October 4, 2016

Breast Cancer Awareness Month - Day 4

Over 1/3 of those with early stage Breast Cancer will still go on to develop Metastatic Breast Cancer (stage 4). It can happen in  1 month, 1 year, 3 years, 10 years, even longer after the original cancer was considered 'cured'. 

110 people, mostly women die of metastatic breast cancer in the USA every single day. How is that for being aware?  Please watch the video below. It is less than 1 year old now. Both Maggie and Heather have since passed away from breast cancer. Hear their voices. 

Monday, October 3, 2016

Breast Cancer Awareness - Day 3

Breast cancer affects the entire family, not just the "lucky" one who gets it. It is hard work to keep the rest of life normal for kids.  When there are good days, they are celebrated.

Friday, September 30, 2016

Stop funding Breast Cancer Awareness, Prevention and Early Stage treatment!

Ha, I bet that got your attention No it was not a typo nor a way to fool you. I really do believe that.

Okay, who really is not aware that breast cancer exists? Awareness requires no funding, no pink ribbons, nothing. 1 in 8 women will be diagnosed with breast cancer. Those women are friends, mothers, daughters, sisters, wives; trust us, we are all aware. The one awareness I would happily fund is that women are not the only ones who get breast cancer. That is right. Not sure you all knew that, but men get breast cancer too. Now you are aware; tell two friends you know about this and they will be aware and tell two friends and "so on and so on".

As for funding early stages and prevention, while they are important I will ask you why is it SO important? Why is it so scary for someone to be told "You have breast cancer"? It's scary because of those told, 1/4 will become (or already are) metastatic, aka stage 4. And stage 4 is terminal, do not pass go, do not collect $200, it will kill you. And the stats on how fast it will kill you are beyond scary. From time of diagnosis until death, the average person with "mets" has 18-24 months to live. That is why a breast cancer diagnosis is so scary, even in an early stage, It's the possibility of stage 4 that scares people.  Yes chemo and radiation are scary, but death is more scary.

So I have a proposition. Turn stage 4 breast cancer into a treatable condition that does not shorten life to under 2 years. Seriously. Make stage 4 cancer a chronic condition, drugs for life, even with side effects FIRST. Take away the death sentence as a priority Remove it as an option from the table.

Then and only then take one step back, and start to work on stopping early cancer from becoming stage 4. When that is done, work on preventing cancer.

But wait, you say. If they can truly prevent cancer, isn't that a better choice than working on stage 4? NO! NO! NO! Doing that is telling anyone who already has stage 4 cancer, who had cancer at any stage at any point in their life that could come back that they don't matter. And come on, this aspect has been worked on for many decades with no success. Stop making breast cancer a possible death sentence first then go backwards. Seriously. Tell the 113 USA women who die every single day that they matter.

Oh no, you say, "big pharma would never go for that". Um, if they were smart they would By focusing on treatment and prevention, so called big pharma is killing their own business.

Lets do the math and lets make it simple.
Lets say a 100 people develop an early stage breast cancer each year (very low but an easy number to work with). Lets also say treatment (probably chemo) costs 100 units a month. In an early stage cancer this is 6 months and then nothing. So we are at 100 people * 100 units * 6 months or 6,000. At this point, about 75% will remain cancer free for life. The other 25% will have a re-occurrence, not all will be stage 4 but let's go right there. Those 25 people will have 18 months of treatment (and then die) for a total of 2,500. Making the total money that "big pharma" will get from the original 100 diagnosed is 8,500.

Now do that math if stage 4 is a 'normal' lifespan but includes treatment, even keeping the current survival rate at 75%. We have the original 6k from that first treatment. But, then we have 20-50 years (or more) of lifetime treatment for those who became stage 4. Lets split hairs and go with 35 years. Now you have 100 per month at 12 months times 35 years or 42,000. Add that to the original 6k and you get 48,000.

Did you see that, if big pharma could effectively treat stage 4 they could get 41,000 extra for every 100 newly diagnosed patients. Maybe remind them of the profit potential. Pharmacological companies are for profit. They are. They will not change. Show them the real profit in effectively treating stage 4.

Scientist on the other hand, are all about the science, the discovery. There is not a scientist out there, studying cancer (or anything else) who does not want the fame that would come with a breakthrough discovery. Let them know they could also get the fame from stopping the death sentence, from finding long term, lifetime treatment as from a cure.

Stop the deaths. Stop the fear. Put the money where it will help the most.