The "Doh' Factor

I read a blog post this morning on the National Pain Report that came from another blogger. She wrote about wondering why researchers waste their time on the obvious? A research report that says 'fibromyalgia causes pain' or 'breast cancer can be found in men as well as women' or some other stupid blatantly obvious answer is a complete waste of time and money. When the answer is basically 'doh'. It was a waste.

Donna sums up her post by stating that research should focus on two questions, and two questions only:

• What causes fibromyalgia?
• And more importantly, how do I get rid of it?

And just switch that word 'fibromyalgia' with the word of your choice - breast cancer, thyroid cancer, rheumatoid arthritis, degenerating disks are my choices. But you get the point.

My inbox is filled with the latest in medical research. And so often, I just wonder why they even bothered with the study. The results don't seem to tell me much and often only confirm what is previously known. I know if research discovers something they need to confirm it with multiple tests. But they don't need to announce it every time. 

Seriously, just give me the cause of my ailments and tell me how to make them go away. Thats enough for today. I am awfully cynical this morning. Maybe its because I have been up since 2:00 am (thank you fibromyalgia for giving me insomnia too).

ASCO 2016

Next Friday, June 3, ASCO 2016 starts and runs through the weekend. So what? ASCO is the American Society of Clinical Oncology and each year at their annual meeting, all sorts of new research is announced and made available to the public. Usually I realize that ASCO is going on when its almost over so I am sort of proud of myself that for once I figured it out before it started.

What does this mean to the average cancer person? Not much unless you want to find out about the latest in cancer research. Personally I try to keep up on all the advances that relate to me. I recommend it to others to go through.

You can follow the information on asco.org. Some of the biggest advances actually are available in the news as they can be that significant.

My 2 cents for the day.

Breast Cancer: At What Cost?

Even with insurance the cost of any ailment, not matter how large or small, can be formidable. For some people the $20 co-pay to see the doctor can be a dent in their wallet. And new research shows that even with insurance, depending on coverage, state of disease at diagnosis, treatment required, and many other variables, medical bills can range between $20,000 and $100,000.
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I know that even with my health insurance, which is pretty darn good, we spent thousands of dollars on my health right after diagnosis. And with my oh-so-healthy-body, we continue to spend thousands. And you can subtract any potential salary I might have - because I can no longer work.

Going back to work after breast cancer can take a few years. I know many women who do not return to work full time because they do not feel physically or emotionally up to it. Even if there is a financial need.

Breast, or other type, cancer diagnosis, knocks your socks off. You may never regroup. You certainly never go back to your old self (just that fictitious new normal). And that you forked out up to $100,000 just to get to that new 'normal', your wallet (and retirement) won't be the same.

You can go to doctors and medical professionals to heal physically. You can go to support group and therapists to help mentally. But financially you are never the same, no matter how rich or poor you were to stop.

Cancer Moonshot Conference

I am not sure what to think about the Cancer Moonshot Conference. I just found out about it. A one-day conference that will bring together researchers, patients, and more to encourage collaboration and hopes to double the pace of cancer research. The conference will take place June 29 and then reports are due in August.

So? Big whoop! Seriously, my first thought was what is the point of having a conference? People do not need to be physically brought together to promote discussions. A lot can be done virtually if managed correctly. So why spend the money?

Travel and hotels are expensive. If you want to have a full day conference, you need to pay for two hotel nights or people will start leaving at 4 pm to get to their flights. If you build in some downtime, people will talk more informally and really get to know each other.

To be really beneficial, if you are going to spend the money, make it a three day conference. Make attendance mandatory if people are going to participate in the moonshot.

And about that moonshot, I understand the urge to cure cancer. I've been waiting a long time. And how are you going to do it without money? The White House asked Congress for $1 billion and only a little bit has been approved.

How are you going to double the pace of cancer research? Some things can't be rushed - like waiting for tumor growth on a research mouse. You really can't speed that up. I guess you can get people to collaborate and talk to each other more.

Is the Biden Moonshot the end of Nixon's War On Cancer"? That might help get rid of all those stupid war terms for people with cancer. Would we then end up with space terms for cancer? 'Orbiting through chemo'?

She Left Us A Great Legacy

Last week, Jody Schroger, passed away from metastatic breast cancer - that's the kind that kills people. Jody was legendary in the breast cancer world. Why? Because she did so much. She helped build the metastatic breast cancer community, on Twitter and elsewhere.

Jody was the kind of person we should all be. Very low key but very strong in her actions. If you google her, you will be surprised on how many places she turns up. That's because she helped found Breast Cancer Social Media.

"The Breast Cancer Social Media (BCSM) community began with a simple question – could the power of social media be utilized to unite, educate, and empower those affected by breast cancer?" 

Two breast cancer patients, one of them Jody, and one doctor set out to answer that question. They have a huge impact on the breast cancer community through their Twitter chats. I am not a Twitter chatterer but I did read through some of them and was impressed with them. (If you search #BCSM on Twitter you will see what I mean.)
I actually met Jody, really met in person, at some event we were both at. Was it a DOD CMRP or a pharma industry meeting? I can't remember. But after the meeting we both ended up in the same terminal at the airport and hung out for a while as we waited for our flights.

It wasn't a significant conversation. We talked about a few issues, chit chatted about being stuck in an airport, as well as coping with cancer and the importance of being active. Then we parted and headed for our respective gates. I had a weird feeling that I would probably never see her again. She left us a great legacy.

Disappointment

I just got back from the knee doctor. (I think I almost have a doctor for each body part these days.) What a disappointment that was.

So I met with my knee doctor and another knee doctor he brought in to consult. My first knee doctor, Dr. L, has been great. He has been talking to me about not having my ACL repaired because he was concerned it would never heal right and would always be stiff. So he wanted me to see Dr. B to get another opinion on this.

Dr B gave me his thoughts. First of all, he reiterated what Dr L had told me - no guarantee it would ever heal right. And he also said there is no guarantee my knee would be any less painful after the surgery.

So the best option for me is to wait until my knee is really bad and I get older and then have a knee replacement. I need to be older so I don't live longer than the replacement knee parts (because if you replace it a second time, it never works very well). And if they do the ACL repair now, it would make the knee replacement more difficult and riskier that it would not do as well.

In the interim, I got a cortisone shot in my knee to see if that helps. I can go back and get more cortisone shots if it acts up. (Did I say I hate needles?) And if it starts collapsing on me (when I am walking on a nice flat surface), I should go back and see him. And continue the PT exercises for eternity. Also, wear a knee brace as needed. (Knee braces on the beach cause tan lines.)

So I am disappointed. I was hoping for the magic silver bullet that will cure all my ailments, including my knee. Damn.

Not only high prices but short changing!

Cancer drugs can be life savers, but also budget breaking, bankrupting expenses. And the blah, blah, blah from the pharma manufactuers are that they have programs for people who can't afford them.

Herceptin is one of those life saving drugs that do not come cheap, while saving many lives of women with Her2 positive breast cancers.

Now Genentech, manufacturer of Herceptin, has been accused not once, but multiple times of short changing hospitals in the amount of drugs provided. Of course, they are denying the claim. But since it didn't happen just once, I have very suspicious.

I try not to be cynical but when something happens more than once, it becomes a duck (walks like, talks like, etc.).