Sunday, November 23, 2014

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:
  1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
  2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
  3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
  4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
  5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.
 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Saturday, November 22, 2014

There is a huge lesson here for all of us

We all have a lesson to learn here. We need to learn to accept our lives for what they are instead of allowing parts of it to cause us stress or depression.

I have now read this article three times. Learning to Live with It: Becoming stress free.

The more I read it, the more it helps me think of my medically disastrous life. I have continuous problems where my health keeps throwing another disaster my way and I have to learn to cope each one. A cancer diagnosis was one - maybe a touch of PTSD with that? But what about an RA diagnosis? Making life more fun each time.

Every change requires adaptation to survive and learn to readapt to the new parts of your life. But we don't need to change the external forces in our life - whether a bad partner, but learn to change our life to cope in its new version.

But the goal of learning to live with, not necessarily to accept it, but to cope, survive and thrive. That has become my goal now. I will keep reading and maybe learn some more about this. Many lessons here.

Friday, November 21, 2014

It all caught up to me

Exhaustion that is. I have been riding this wave of feeling okay most of the time. This happens every so often. Wednesday I felt it a bit. I came in the door at 530 after getting my nails done (a post chemo personal preference - after destroying my nails in chemo, I appreciate them much more now) and felt a wave of exhaustion come over me. We did go out to dinner anyway. I figured I would be okay if I just went to bed after that.

Yesterday I was okay in the morning and made it through work, a couple errands and the grocery store. By the time I got home, I was tired and decided I needed to lie down for an hour before making dinner. An hour later I got up and told my husband it was left overs in the microwave for dinner and back to bed for me.

I was exhausted. I was more than exhausted. I slept all night. The alarm went off and I slept for another hour.

I am still tired but I think I can get through today and probably cook dinner.

This is what happens to me. I function normally and do normal non-energetic things. Then all of a sudden I am completely wiped out. Exhausted.

Tomorrow I hope to sleep late. Maybe even get that crucial 12 hours of sleep. Thank you fibromyalgia and rheumatoid arthritis for doing this to me.

Thursday, November 20, 2014

Vacation breasts?

Or even 24 hour breasts? Really? Yes, seriously. This is the latest in the fad for women. What happened to 'love your body the way you are'? Well thanks to this new doctor in New York, you can get 'instabreasts' which last 24 hours for a paltry $2500. Then in a couple of years you can get vacation breasts - that last 2-3 weeks.

Basically they inject silicone under your breasts and make them appear larger. Why, why, why? What about all the women who have had breast cancer and now just want to look and feel normal again?

There is one voice of reason in the video from a man who points out the idea that why are we messing with nature and having these invasive procedures? And if you had them done repeatedly,  would there be any long term implications?

Wednesday, November 19, 2014

The big scary headline

The latest big scary headline from the pharmaceutical industry says that it will cost $2.5 billion to bring a new drug to market. That's a lot of hype over a little factoid. And this kind of thing pisses me off. Increasing drug prices are an increasing part of medical costs in recent years.

First of all, yes that is a hell of a lot of money. There is no denying that. Second of all, its not as big as it sounds in terms of how they will recoup their money. For example.

If a new drug is developed that will treat a mere 10,000 people each year and costs $5000 per month (not an unexpected amount), it will take the drug companies 4.17 years to recoup their expenses. 10,000x$5,000x12=$600,000,000. $600,000,000x4.17=$2,500,000,000.

And this is why I really have no patience with the drama from the pharmaceutical industry:

"Development costs are one factor companies use in determining how much they will charge for newly approved prescription drugs. But they also weigh demand, the competitive market in their therapeutic areas, and the value they believe a treatment can provide to patients."

So if you thought the so-called 'death panels' were going to put a dollar value on human life, you don't need to worry because the pharma industry already did when they include the 'value they believe a treatment can provide to patients'.

But I do understand the value the pharmaceutical industry brings to medical advancement. I just have a problem with the dollar amounts and drama.

Tuesday, November 18, 2014

Snake oil or good treatment?

Every so often I become a skeptic, well maybe a bit more frequently, but sometimes I am just not sure what I think of new treatment options. And here is an example.

Women with dense breasts run a higher risk of breast cancer being detected later as opposed to sooner as the density makes it more difficult to detect tumors by mammography. So in Australia, there is a new treatment for women with dense breasts. It is an implantable tablet that is placed under the skin and lasts for about four months before they need to go through it again. It has two benefits - reducing breast density and to reduce perimenopausal symptoms. You can see a video on it here and visit their website for more information here.

But its hormones - testosterone and others. Its called T+Ai.... Me I am not a big fan of hormone treatments after what happened to women who were treated with them in the 1980s and 1990s and then found it lead to higher rates of breast cancer. I know testosterone is not a breast cancer hormone per se but I feel it would be messing with my body's balance too much. And if it reduces breast density it is making a permanent change in your body which can't be undone.

It sounds good and could help women be able to detect breast cancer sooner. But is it fear mongering? OMG, you have dense breasts and that means you will get breast cancer and die because it won't be detected early no matter what you do?!!!! Maybe for high risk women with dense breasts but not for huge groups of women.

So my jury, of one, is still out on this one. I am a skeptic.

Monday, November 17, 2014

Over treatment issues again

Electronic medical records do all kinds of helpful things. I remember going from doctor appointment to doctor appointment, lugging a six inch thick file. Now the doctors and nurses carry laptops or tablets and can look up information quicker to see when I last had a blood test or MRI.

Now the data is being mined to find out if Americans are getting their cholesterol blood tests, mammograms, and colonoscopies and all sorts of other helpful tests. But also to see if people are getting their tests too frequently.

And it turns out that some Americans are getting too many colonoscopies. Really? I mean who wants to have a camera 'there' too often? I am personally in the five year club for them. My husband was in the two year club but now is also in the five year club. But the average healthy person needs them every ten years, no more often.

If you are over fifty and never have had a colonoscopy, can I tell you two stories about people I know personally who waited too long? One is now stage IV colon cancer.

There are concerns with too frequent testing unless there is a compelling reason - higher costs and higher risks. Colonoscopies do come with risks as do any invasive peek inside you. And even if you do not pay out of pocket for a colonoscopies, there are costs incurred.

Medical over-treatment is a real problem. Antibiotics are given to treat viruses. This leads to antibiotic resistant germs. Choosing Wisely is an established project to help patients question tests or procedures that might actually be over treatment. Yes an ounce of prevention is worth a pound of cure. But too many ounces of prevention can quickly add up to the pound.

Sunday, November 16, 2014

Its not a tumor....

So life in cancerland is basically summed up by the one thought: "will it come back?"

As this child helpfully tells us in Kindergarten Cop, that is the one thing we can't get out of our heads.

Every ache and pain could be a something, meaning a bad something. We have to learn is how to balance that thought. Sometimes helpful people say wonderful, well meaning things like this to us which help raise our cancer-cootie-concern-level. Or sometimes a peak inside our insides in an MRI, PET or CT scan gives us bad news. At which point the cancerland roller coaster starts going up the really steep hill and becomes a whirling twisting ride until we hopefully can get back to the smaller hills.

No I am fine but this video popped up on my radar the other day and it makes a valid point.

Saturday, November 15, 2014

Bad news doesn't always mean bad news

Puma pharmaceutical's new drug, neratinib, did not perform as well as Herceptin in the latest clinical trials - by the definition of extending disease free survival.

However, bad news doesn't mean bad news when you look at the rest of the story.

"As expected, there was no statistically significant difference in progression-free survival and objective response rate for the paclitaxel plus neratinib arm compared to the paclitaxel plus trastuzumab arm," Auerbach said. "However ... while the development of other HER2-targeted drugs has produced a clinically meaningful benefit to patients with HER2 positive breast cancer, these drugs have had little impact on CNS metastases. As a result, we believe that there remains an unmet clinical need for reducing the incidence of CNS metastases, and the results of the NEfERTT study demonstrate that we may be able to provide this type of improvement with neratinib."

CNS metastases are Clinical Nervous System mets (I had to look that up). Which would really suck. So that means that while it did not extend disease free survival it did open a door to other advancements. So stay tuned, I guess, for the rest of the story. Or maybe this is just called progress.

Friday, November 14, 2014

Personalized cancer care is looking more like a crap shoot

All sorts of research is being done on personalized cancer care. But it looks like a crap shoot to me.

There have been some recent developments:

"This summer, a Mass. General team showed that it was possible to isolate rare tumor cells circulating in the blood and analyze them to understand how a patient’s cancer was changing. Other researchers have been working on developing mouse avatars, in which a patient’s tumor is grown in a lab animal in which new therapies can be tested."

This is pretty cool. But there are still problems. For example, researchers have been taking cancer tissue from patients who's cancer has returned and then bombard it with different therapies to see which ones work. The premise is then that the treatment will work in the patient.

"Researchers must show that the drug predictions that seem so promising in a dish actually work in patients. They also will need to deal with technological issues, such as the time it takes to grow patients’ tumor cells in a dish — between two and six months in the study, and not every attempt was successful."

Not only does the time to grow the tumor cells prolong the wait for treatment - which cancer patients with a recurrence do not have. But then there is no promise that the treatment will work.

So its a crap shoot. The patient has a choice - try the best treatment available now or wait two to six months to see if something better might be chosen from a petri dish? Does anyone have a different suggestion?

Or maybe 'more research is needed' as they always say.

Thursday, November 13, 2014

Cats Help Researchers Develop Treatment for Breast Cancer

A couple of years after my breast cancer diagnosis, a friend called and told me her cat, Abby, had been diagnosed with breast cancer. Abby was fairly young, about 6 (the cat, not the friend) and she felt lumps on her stomach when picking her up. She took her to the vet and was told the not so good diagnosis.

For cats, there is no chemo or radiation. They basically can  have a surgery that can best be thought of as a kitty mastectomy and that's about it. For Abby, even after the surgery, she lasted less than a  year before it became obvious that the cancer had spread and was causing her lots of pain and very difficult decision was made.

That was my first knowledge of feline breast cancer. And then I did some research and found out it is a fairly common killer of female cats.

But now, cats are being used to help find a breast cancer treatment. Cats are more closely related to humans than mice. I don't even know if mice get breast cancer. Usually for clinical trials they are bred to have certain conditions so they are more appropriate for the potential trials.

The cats get an injection before surgery and then again a month later. They are then monitored to see if there is a recurrence - which is usually what kills them now. The hope is they will live longer, healthier lives.

So in my (tiny, non-medical, chemo impaired, fibro fogged) mind, it would make sense to do research for breast cancer on animals that actually get the disease in hopes of curing them as well as humans. I am not in favor of animal testing as a rule but in this case, they are hoping to cure the cats from something for which there is no current cure.

I am a cat lover and am typing this while being supervised by my 20 year old cat. I would hope this would be a treatment for them and us.

Wednesday, November 12, 2014

Putting emotion into our medical decisions

Have you ever gone to the doctor and insisted that you needed a specific test or treatment? You were so wrapped up in the emotions of moment and the ailment that you were not being rational.

You aren't alone. Emotion often leads us to choose unwisely. An example of this is the mammogram decision. Why have one? What if the result is bad? (This is the reason I will never go to a psychic.) Who wants to get bad news. And then the worst, what if the bad result is wrong and its actually nothing. That would be a false positive.

But apparently women do not think about the risk of false positive when they have mammograms.

"American women face conflicting advice about whether to be screened for breast cancer, at what age and how often. The decisions they make are often more strongly influenced by fear or a friend’s experience than by a thorough understanding of the benefits and risks of mammography."

But before we have any test or procedure, we need to be sure we educate ourselves on the possible outcomes and potential problems. In the case of breast cancer, it can be anything from a false positive to over treatment of a cancer. We just need to know first and make a smart decision.

Tuesday, November 11, 2014

Lessons from famous cancer people

Just because someone is rich and famous and survives cancer, it doesn't mean they can invent a new way to cure cancer. There are a few I would like to mention here. I have nothing against these women at all but am concerned about the weight their name carries and how many followers they have simply because of their fame.

Suzanne Somers - she has a book out on chemo free treatment of cancer based on interviews with doctors. I'm sorry but there is no way to globally dismiss or prescribe any type of cancer treatment without a one-on-one conversation.

Farrah Fawcett declined conventional, FDA approved cancer treatment which would have required major surgery and resulted in needing a colostomy bag for life and went to Germany for a different treatment. Which unfortunately was painful and did not work in the long run. This reminds me of the families who went to Mexico for Laetril treatments in the 1970s. If its not approved here, there may be a good reason for it. And running overseas may not be a good idea.

In a recent article in AARP, long time friends, Melissa Ethridge and Sheryl Crowe talk about their cancer treatment successes. While I found the article interesting, I was not too thrilled with the last image:

Melissa 'turned off' her BRCA gene by eating better. And Sheryl meditates so that her cells function at a higher level.  I'm sorry but you can't turn a gene off. Its part of you. And maybe meditation helps you but it doesn't mean it can cure cancer. Being healthy can help you reduce your risk of cancer but don't think daily meditation will keep you healthy.

I can go on. These four women are ones who first came to mind. If you are rich and famous you have access to the best care and the best types of supplemental treatments from personalized workouts, professional chefs, and expensive organic food and personal doctors. But that doesn't mean your treatment is going to work for anyone else. And please be clear on that to your fans and followers.

Monday, November 10, 2014

Practice makes perfect

Down under, ovarian cancer research is going to be based on the model for researching breast cancer - many subtypes, etc. Ovarian cancer is much rarer and has much higher fatality rates. The biggest problem with ovarian is it is often not detected until it is later stage. Their is no 'mammogram' for ovarian cancer for screening for high risk women.

"Ovarian Cancer Australia has announced a landmark national action plan, following in the footsteps of breast cancer researchers.

They hope the plan will see the same gains in survival rates and treatment options that similar strategies have made for other cancers.

The plan aims to diversify clinical trials and tailor treatment to specific subgroups of the disease that have only recently been discovered.

"What we know about ovarian cancer now is there are many more subgroups than we previously thought - that's come from understanding the gene wiring of the cancers," researcher Professor Clare Scott said.

An initial investment of $1 million between Ovarian Cancer Australia and the Peter McCallum Cancer Centre has been put towards establishing new clinical trials that target the unique molecular characteristics of each cancer subgroup."

So after practicing cancer research for decades, the advancements are going to be applied to ovarian cancer as well. Its about time.

Sunday, November 9, 2014

Its Not a Contest

Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.

I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly. 

Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.

Share It