I did get the memo but it didn't help

Eat oily fish, high in Omega-3, to reduce risk of rheumatoid arthritis. That was a memo. I got it. Wthan others. e eat a fair amount of fish - especially since we live within 10 miles of the fish filled Atlantic Ocean. Now I have rheumatoid. Now granted it is in my family but I did follow directions.

What this proves is that not all research is a magic pill. I mean you eat whatever for whatever its benefit is supposed to be so you can reduce your risk of some ailment. There are two problems with these theories:

1. Some people think that they cannot get the ailment because they did what they were told. They didn't smoke, so they won't get lung cancer. Well you can. You are only reducing your risk.
2. While they represent advances they are not cures. They are more like suggested life style changes. 

 If asked, I do live a relatively healthy lifestyle - I eat my fruits and vegetables, I don't skip meals, I get exercise, blah, blah, blah. And I am probably one of the least healthy people around. So just because I got the memos, doesn't mean they helped.

Maybe I'll be cranky today.... My back hurts. Some days I am just more cynical than others.

A simple test

Right now the only way for a doctor to diagnose fibromyalgia in a patient is to press on a bunch of tender points. If more than so many of them are sore, the diagnosis is fibromyalgia. How easy. Not.

First of all when a patient shows up complaining of pain, other tests are done to rule out all sorts of other conditions. This can take time. As in months or years even.

It takes three to five years for a patient to be diagnosed with fibromyalgia. That is a really long time to live in pain. And often fibromyalgia is diagnosed with other conditions.

I was told I have fibro and have rheumatoid. We are trying to get the RA under control so we can then focus on treating the fibro pain. I was also told that it is often impossible to distinguish pain caused by RA vs. the pain caused by fibro.

I am in the state of still trying  to get the RA under control so we can talk fibro pain.

But now there is good news. There is a new diagnostic test to diagnose fibromyalgia. It is supposed to be 99% accurate. The problem is that it costs $744 and most insurance companies do not cover it. [That needs to change.]

And even more good news there are two more tests being developed that look at blood markers to diagnose fibro. These are still in development but represent lots of progress.

I will talk to my doctors about the new test and to my insurance company. Because the diagnosis criteria are relatively vague, in my mind, I think I would prefer a solid yes/no test. And if it could reduce the three to five year time frame to diagnose fibro for others, even better.

A bit scary

I don't mean to target the pharmaceutical industry but I do have problems with the costs of medications which is why I always read the articles about them. Then the articles intrigue me and I start blogging about them.

Last week I saw one on how Glaxo SmithKline executives were being detained in China - charged with bribery. This is not the first time that this has happened and probably not the last as well.

Then this morning's news adds to that to say that GSK may have not been using good business practices in managing their clinical trials in China. They even admit that some of their executives might have broken the law. And business practices of other pharmaceutical companies will be examined.

Its one thing to pay a lot of money for medications because of the rationale that their research costs are so high. But its another thing all together if they are not working within the law and using questionable handling of clinical trials. Possibly even not reporting the results of animal testing.

Now I feel so much better. The really expensive drugs may not have been put through all the clinical trials that are required. How comforting. Short cuts always come back to get you in the end. But from the patient perspective, it is a bit scary.

Looking for new news

I receive several billion regular updates on advances in the treatment of breast cancer, thyroid cancer, rheumatoid arthritis, fibromyalgia and back pain, among other ailments. Every so often something pops up and grabs my attention or even the headlines on new advances that show some real significance.

But they always speak of small studies and that more research is needed. And then we never seem to hear the results of anything only that more research is needed. And nothing seems to ever help me positively. All I have gotten so far is to learn that I need to stay on Femara an extra five years. But no miracle cure.

After six years of this obsession with cancer research, I feel like there is not much new. Maybe its the lack of the significant breakthroughs that impact me positively. Maybe its frustration with my health's continued downhill slide.

There has been so much promising research but we never seem to see the results. A significant part of this I think is do we remember five years ago when they said this looks good because of this but it needs more research. Now the research is done but we can't connect it because its been too long.

There should be away to easily connect all of this so we can see the long term progress.

I get so confused on all this progress business

I saw this video and thought 'wow this is great news, more progress in treating late stage breast cancer'. Then I started thinking, did I see a different article on this new drug before or is a new one that I hadn't seen before. I get so confused.

I do think this is progress but I don't know if its 'new to me' so to speak or if I did blog about it previously. Well, either way its a nice story and its nice to see progress. But further testing is needed, its only available in clinical trials, and more trials may be required so it is still months or  years away from being available.

Cancer treatment in stealth mode

I find this fascinating. Stealth mode makes me think of spies, CIA, cold war, KGB, NSA, guerrilla warfare, covert operation and all that.

I found an article on Smithsonian.com, The War on Cancer Goes Stealth, which explains in detail what exactly they are doing - tricking cells, sneaking past the sentries, etc. I know it needs more testing and many researchers will be busy with this for a long time but treatments targeting individual cancer cells so patients can avoid chemotherapy and enjoy a good quality of life.

Here is a TED talk explaining it more with links to more talks on it here.


This intrigues me to no end. And convinces me I should have paid more attention in biology and chemistry (physics not so much) so I could understand it better. And it shows hope for a new wave of treatment that are not as harmful to the patient.

My only concerns are - how soon will this happen and how much will it cost?

Big words to be translated

I find inspiration for blog posts everywhere. I keep open tabs  in my browser holding stories for me to write about. Sometimes I get a little backlog - like right now. I have a backlog and the problem or the source of the back log is ... drum roll.... big words. I don't feel like deciphering them and figuring out if they have content to be worthy of a blog post.

I have a Business wire story on the the first test to diagnose fibromyalgia:

• "First Test to Objectively Diagnose Fibromyalgia Now Available - New Peer-Reviewed Research Identifies Diagnostic Biomarkers for Fibromyalgia SANTA MONICA, Calif.--(BUSINESS WIRE)--A recent peer-reviewed study, published in BMC Clinical Pathology,^[1] reveals a medical breakthrough discovering multiple biomarkers based upon highly sensitive and reproducible medical investigations. Conducted by the University of Illinois College of Medicine at Chicago (UIC) and EpicGenetics, a privately-held biomedical company, the research has led to the development of The FM/a^® Test (www.thefmtest.com), the first test to objectively diagnose fibromyalgia."
  

The important thing here is that there never has been a real test. But look at those big words!

• 'Drug holidays' beat cancer drug resistance in mice -
  Introducing medication-free spells to some cancer treatments may keep patients alive for longer, studies in mice with skin cancer suggest.
  The animals had melanoma, which can rapidly become resistant to treatments.
  However, a study in the journal Nature showed tumours also became dependent on the drug to survive. Withdrawing treatment caused tumours to shrink.

I would be happy to have a drug holiday every once in a while. I mean am I building up a resistance to some of the medications I am on? Or do the days count when I just forget my pills (oops)? And then the article goes on with lots of big words!

• Skin cancer 'able to fight off body's immune system'
  A deadly form of skin cancer is able to fend off the body's immune system, UK researchers have found.
  Analysis of tumour and blood samples shows that melanoma knocks out the body's best immune defence.
  Potential test could work out which patients are likely to respond to treatment, the Journal of Clinical Investigation reports.
  Cancer Research UK said the body's response was a "complex puzzle".

So they discover treatment and then they find out it doesn't work for everyone.  Great. More research is needed, don't you think?

• Key Enzyme Missing from Triple-negative breast cancer
  Key Enzyme Missing from Aggressive Form of Breast Cancer, Groundbreaking Study Shows
  Feb. 28, 2013 — A groundbreaking new study led by the University of Kentucky Markey Cancer Center's Dr. Peter Zhou found that triple-negative breast cancer cells are missing a key enzyme that other cancer cells contain -- providing insight into potential therapeutic targets to treat the aggressive cancer. Zhou's study is unique in that his lab is the only one in the country to specifically study the metabolic process of triple-negative breast cancer cells.
  Normally, all cells -- including cancerous cells -- use glucose to initiate the process of making Adenosine-5'-triphosphate (ATP) for fuel to carry out essential functions. This process, called glycolysis, leads to other processes that use oxygen to make higher quantities of ATP -- but solid tumor cells, which have little access to oxygen, are forced to rely almost exclusively on aerobic glycolysis for survival.

 The next paragraph is a little deep:

• Zhou's study, published in Cancer Cell, showed that the powerful transcription factor complex Snail-G9a-Dnmt1 is over-expressed in triple-negative breast cancer, inhibiting the enzyme 1,6-bisphosphate (FBP1). The loss of this enzyme shuts down the glucose anabolic pathway and promotes the glucose catabolic pathway, leading to a large amount of glucose entering the tumor cells and thus "feeding" the aggressive cancer. This metabolic switch empowers the triple-negative breast cancer cells to suck more glucose from the body, increasing macromolecule biosynthesis in tumor cells and maintaining ATP production despite a dearth of nutrients and an oxygen-free environment.

Way too many big words! But behind it is some very interesting news.

• Early rheumatoid arthritis and resolving fibroblasts segregate according to Dickkopf related protein 1 expression
  Dickkopf related protein 1 (DKK1) has been proposed as the master regulator of joint remodelling. This Wnt signalling pathway inhibitor is involved in osteoblast growth and differentiation. In rheumatoid arthritis, increased DKK1 plasma levels correlate with inflammation and bone erosions. Furthermore, patients with rheumatoid arthritis who carry genetic variants in the DKK1 gene have higher serum DKK1 levels and more progressive joint destruction, suggesting a fundamental role for DKK1 in rheumatoid arthritis. In the diseased joint, synovial fibroblasts are key mediators of bone and cartilage destruction via secretion of matrix metalloproteinases and regulation of monocyte to osteoclast differentiation. In this study we analysed whether DKK1 secretion might contribute to this effect. We hypothesised that synovial fibroblasts from patients with early rheumatoid arthritis would be characterised by high DKK1 expression compared with those from patients with resolving arthritis.

Too many big words but lots of great news here. I am leaving these articles to you, the readers, to decipher as I am taking a break from big words these days. Chemobrain/fibrofog or just plain pain and fatigue are allowing me to do this. And just plain old lack of inspiration.

Another government report

There was a big interagency report released this week on breast cancer. This was the result of a requirement by a 2004 Act of Congress requiring Health and Human Services (and the creation of an alphabet soup agency - IBCERCC) to review "the current state of breast cancer and the environment research and make recommendations for eliminating any knowledge gaps in this area."

You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.

My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :

"What’s needed is better coordination among researchers and increased research funding, according to the report."

I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?

All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.

A cure for lymphedema

I  had heard about this a few years ago and was told that it was only in experimental stages and not yet ready for use regularly. However it seems enough time has passed so that it is now becoming a reality.

This is nice progress to see that something was too far off into the future to be a reality to end up being put into use.

Medical research can do nothing

 

But marketing can make you believe it did. I am overjoyed I tell you, overjoyed to read the news:
"Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing. 

"“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”"

And its not that the drugs don't necessarily work but that the side effects can cause more problems than pain they resolved. Great. Years of medical research down the toilet. (This is an example of while they had great intentions in their research they forgot the key phrase 'do no harm'. It doesn't help if a medical advance comes at a great expense to the patient. They achieved their goal but forgot about us patients. This is one example of many out there.)

Since I have been diagnosed with fibromyalgia so many people have said to me 'don't they have medications now that you could try?' The answer is yes they do. And I have tried Savella and Lyrica and I think Cymbalta already. I didn't have as many side effects but they all stopped working for me. And they interact with other medications I take so they have to be changed as well.

They should do more medical research and pay attention to the overall well being of the patient, not just resolving the pain.

Your genes at work

We all have lots of genes and DNA and RNA and all those little bitty muons and amino acids and proteins and lots of other little bitty things that make us up. We have never learned a lot about many of them but are beginning to find out more and more.

Do you remember when they said they could sequence the human genome and they said it would lead to medical breakthroughs? I think it finally is - at least to my non-medical brain.

Anyway, two new advances have popped into my little realm recently.

1. Fibromyalgia has been very hard to diagnose. There is no test. There is no real way to say yes or no you have it. Basically if you have pain at enough of certain pressure points combined with other symptoms, they say 'you have fibro'. Not a very technical way to do things.

There are little thingies in us called 'cytokines' (not that I really know what they do) but apparently it now seems they have seen that people with fibro have a significantly lower level of this cytokine. Hence they may be able to develop a test. This would be nice to have something definable. As long as it works. I mean there are tests for RA but 25% of patients with RA test negative on them.

They are also leaning towards saying that fibro is not a rheumatological illness but a neuro-immune ailment, different than RA.

2. There is a genetic element to rheumatoid arthritis as well. Where they are finding little regulatory tags in the white blood cells of patients with RA. Basically this means they are finding a switch that makes good cells go bad and let you get RA. And they don't even need to be near by they can be far away in your body, caused to switch by a medication or illness.

So this means they will be able to tell ahead who might be more likely to get RA and take preventative steps and increased monitoring.

I know this is all very technical and you can read the articles I have linked to for lots more science but we can call it progress I think.

The cliff moved

Yesterday I had an appointment with my medical oncologist to finalize me going off Femara (after 5 1/2 years of hot flashes - jealous?). I have been debating/stressing/agonizing over this for a few weeks or months. I expected to have the big conversation yesterday.
I was wrong.

My oncologist's two children shared their stomach flu with their mother. Apparently she started vomiting as she drove to the hospital. I saw one of her nurse practitioners who I had never seen before instead.

She was very nice and remarked about my lengthy medical background (it is now at a level where doctors and other medical personnel comment on it) but we had never met before. She said according to the oncologist's notes when I saw her in August she was going to take me off Femara now, in January.

However, there has been new research suggesting longer on Femara might be better except in cases where the side effects are becoming an issue. Like me - my bones are turning into to Swiss cheese due to osteoporosis. But there still  might be benefit to staying on Femara for a while.

So we ended the appointment with:

She was going to email the oncologist with a list of questions on whether I should or should not go off Femara, when I should have another bone density scan, and when she wants to follow up with me next. I should hear back by the end of the week.

In the meantime, i is my decision on what to do. I can stay on Femara, stop Femara for good, or stop Femara and then go back on it if she wants me to.

The cliff moved. Damn. I feel like a politician.

Did having cancer change you?

They did  a new study (because these pesky researchers need to stay employed) on how people who had been diagnosed with and treated for cancer were doing both physically and medically after treatment.

Well its about time. What did they think that after our oncologists and surgeons send us on our merry way and only want to see us yearly instead of weekly we would just be fine? Seriously. For patients, it has always been a cliff where treatment ends and we are supposed to cope just fine as we switch from constant monitoring to yearly check ups. The doctors abruptly cut the cord. Many patients have an emotional upheaval that coincides with this transition and seek additional support. Its nice that the medical field is taking a closer look at how we cope in the ensuing years.

The study looked at, from the patient's perspective, physical functioning, pain, fatigue, and depression. They compared them to normal people who had never been diagnosed with cancer and found that:

• People who had breast, prostate or melanomas had the same or better quality of life as the people who had never had cancer. 
• People who had cervical, blood, or colorectal cancers and cancers with a 5 year survival rate of less than 25% (liver, pancreas, and lung) had worse physical health related quality of life.
• People with cervical cancer and cancers with low survival rates had worse mental quality of life. The goal is to check again in five years and see how these groups are doing with the advances in treatment.

As we are aware I am not a doctor, researcher or anyone qualified in anyway shape or form to do research as I a merely a cancer person. BUT, as I look at the different cancers they list and the outcome issues, I had a few comments (of course);

• The people who did well were the ones who had the 'high visibility' cancers - breast, prostate, and melanoma. I think of these as high visibility as they get a lot of press. We have pinkificiation for breast cancer. We have PSA tests and possible over diagnosis of prostate cancer and its all over the media. Melanoma is ingrained in all of us as we use sunscreen since birth nowadays. These cancers are talked about, videoed, profiled, and media hyped to no end.
• The people who did poorly physically had the cancers that either had low survival rates or less popular/lower profile cancers. Are they less acceptable cancers to get? Are their treatment protocols more 'damaging' to the human body?
• The people who did poorly mentally had cancers with lower survival rates. This is the most logical to me. If you are told you have cancer and have a low chance of living more than a few years, what is your mental state going to be?

In my mind, this is incredibly important to monitor. Cancer patients are poisoned, burned, and cut up and given a horrible diagnosis. Doctors want to know about every sniffle all through treatment. Then the doctors say 'see you in six months or a year' and the patient is supposed to be 'fine'. Ha.

Keep researching this one. There are lots  of us who would be happy to help in the research.

Nope, rule changing is not allowed

I'm sorry but rule changing is not allowed. We have been good patients and gone for yearly checkups and now they want to change the rules. This is not allowed. I will not allow it. I have been good and now they want ot change the rules and say I have been bad. Not acceptable.

A Danish study recently concluded that regular health checkups may not be doing any good and may in fact be doing harm. The claim is that regular checkups do not decrease deaths from cancer or heart disease and also cause more testing, false positive and negative tests, and emotional and financial stress for the patients.

Hmmm.... Well I'm not agreeing with that one anytime soon. My cancers were both found by medical professionals or tests so I'm glad I had regular check ups.

"The authors conclude that more research is needed to target better methods for identifying disease and to further explore the possible misleading and harmful effects of general health check-ups."

So what this is really telling me is that its not the health checkups that are the problem is that research is needed to come up with better ways to diagnose ailments. So all the researchers did is guarantee themselves their jobs. I'm still going to my regular check ups. No rule changing allowed with out basis.