Friday, September 22, 2017

I Travel In Elite Circles

Well I don't travel actually. But Lady Gaga of all people and I have something in common.We both have fibromyalgia.

Her fibro is bad enough that she has cancelled the European leg of her latest tour. Because of pain and fatigue.Why do those terms sound so familiar to me?

Think of it this way, if a famous personality who makes money by going on tour to sell more albums (or copies of songs downloaded - or however they count that these days) has to cancel, she must be in a lot of pain.

I can relate. (I wish I had a European tour to cancel - as long as I went to a lot of beaches and my husband was there, and someone else carried all the luggage) . I am happy these days with making it through going to the gym and the grocery store before I collapse.

I hope she feels better and gets some good pain management to help.

Thursday, September 21, 2017

Complications After Cancer Linger

My least favorite phrase is 'with your medical history we need to be sure'. I have been hearing it since my first cancer diagnosis. Even though my two cancers, thyroid and breast, are not what are considered the most horrible kinds, they both could recur and kill me anytime they want.

What it has meant over the year is that I have always been sent for more tests than anyone else. I need more blood tests and scans than anyone else. Now as I have developed more ailment such as RA, its harder to treat. One of the costs of my cancer treatment is osteopenia - in a family full of women with osteoporosis, all of a sudden I am much higher risk for it. And the list goes on.

All this makes me cranky and causes many more doctor appointments. My appointment on Tuesday was number 51 for the year. How many of them were for ailments or for side effects or post treatment ailments? I do not want to count. I just hate going to doctors at this point.

After cancer, your life isn't the same. You are going to have more complication related follow ups because of it. You do not get to walk away from cancer. It follows you everywhere, forever.

Wednesday, September 20, 2017

Well, Crapola!

A few weeks ago, I posted about what my pain medication may hide, yesterday I found the truth. Call me slow about some things but I had to do some thinking.

I have RA, fibromyalgia, bad back, etc - all sorts of nice things that cause pain. So I get the good drugs. I have this awesome pain patch that masks 99% of it. It wasn't until I was an idiot a few weeks ago and forgot to change my pain patch I had no idea how much pain.

The thinking process I had to go through was what was all that pain from and why is it important? I know several people that have RA as well, my mother and an old friend. Both of them are on injected biologics for their RA and nothing else. My mother has other issues and has pain meds. My friend does not have pain meds. Her RA is only treated with a biologic.

More thinking. Then I thought, was my treatment of methotrexate and leflunomide supposed to be taking care of all my RA issues and stopping progression? I didn't really know. In recent visits with my rheumatologist she had been concerned why my knuckles were sore (which they shouldn't be because of my treatment) and she had tweaked my treatment a few times.

Finally, on Friday I decided this has gone on long enough. I sent a message to my rheumatologist (who doesn't work on Fridays) and her nurse called me back. She asked me a bunch of questions. I asked her one question - is my treatment supposed to be controlling all my RA so that I don't have significant pain? Her answer was yes. So I knew, my pain meds were hiding much more aggressive RA than previously thought.

Monday, I got a call on when I could come in to see the doctor or one of her PAs as soon as possible. I actually got into see her yesterday. She needs to go to the next level in treatment and talk to my oncologist because of my cancer history. Some biologics have a TNF factor hidden inside (the T stands for Tumor) and she doesn't want to give me a recurrence (which happened to one of her patients a few years back).

But wait:
First, in the interim she wants me to try prednisone again to reduce inflammation. Start really slowly so I do not react again and if I do react I need to call her.
Second, she needs to talk to my oncologist about her thoughts on my medical history and RA treatment.
Third, she isn't going to change anything until my knee is completely healed after my October 5 arthroscopy. So this will be mid to late November before this change happens.

What all this means is now I am no longer in the mild to moderate RA club, but in the moderate to severe RA club. Another club I don't want to belong to.

Monday, September 18, 2017

Being Breast Cancer Savvy

Buried in another article based on a woman doctor's problems getting screened for breast cancer by the UK's NHS, are three rules on how to be 'Breast Cancer Savvy'

  • You Don't Need to Examine Your Breasts
    All women, no matter what age, should get to know their breasts. But experts have stopped recommending self-examination routines. Studies have shown that most women who find breast tumours do so during the course of everyday life: while dressing, or just rolling over in bed. The key is to know what looks and feels normal to you.
I wholeheartedly agree with this. I am incapable of finding any lumps.
  • Don't Ignore Symptoms
    The most common sign of breast cancer is a lump within the breast. But you might find one in the armpit or notice skin changes on the breast such as dimpling, and changes in the appearance of the nipple, or its shape or how it feels, or a discharge. Breast pain on one side that lasts after a period, a rash and any change in the size, shape or symmetry should be investigated.
Well 'doh!' If something not right, get it checked asap
  • Make Sure You Go To That MammogramIf breast cancer is detected early, it is more treatable. Screening uses mammograms – a type of X-ray – to look inside the breast. All women between 47 and 70 are invited for screening every three years. NHS screening is opt-in after 70, so make sure you get in touch with your local unit to make an appointment: nhs.uk/breastscreening.
Um yes. Its a great tool for finding breast cancer before it gets really big and ug

I think I will be forced to blog about the rest of the article tomorrow maybe. 47 is way too late to start mammograms. My maternal aunt was diagnosed at 76 with breast cancer....  Grrr.

But in the meantime. Be savvy. Savvy is almost like being cool.

Sunday, September 17, 2017

Beeswax and Helping

If you want to be a good friend during a medical crisis, ask how you can help. Don't say, 'how can I help?' Ask 'Do you need anything from the grocery store? I'm going later today.' Mow their lawn. Pick up their kids from school. All those things. Anything you can do.

However, its 'none of your beeswax' on what exactly their health issues are so:
  1. Do not interrogate them daily on what's the latest from their doctor 
  2. Do not tell the world every little detail you interrogated out of them. Its not your story to tell.
  3. Do not tell them your cousin's hairdresser's uncle's neighbor's son had the same thing and their treatment was what your friend has and they died in the end. Or conversely, their treatment was different and must be better because they lived another two years.
So remember, do not interrogate, its not your beeswax to share, and any other treatment anyone else had is irrelevant.

But go mow their lawn.....

Saturday, September 16, 2017

Your Decision, Not Your Doctor's

In years gone by, doctors were regarded as gods. They knew all, were not to be questioned and patients should obey unquestioningly. Those days are gone. Patients are empowered. They learn about their conditions, they question their doctors, and they make their own decisions. They may rely on their doctor's advice but clearly make their decisions.

However, a recent study (because we always need more damn studies) found that doctor preferences for surgery type greatly influenced patient choice in early stage breast cancer surgery.

"Researchers surveyed more than 3,300 women with early stage breast cancer and 349 surgeons who treated them. About 16 percent of the patients had both breasts removed.

Only 4 percent of those whose surgeons heavily favored breast-saving surgery and were most reluctant to remove both breasts had the procedure. That compared to 34 percent of patients whose surgeons were most willing to do the surgery, the study found.

"That difference is huge. Even for a procedure that is very patient-driven, we see that surgeons account for a lot of the variability in the community and those surgeon attitudes really matter in terms of whether a patient does or does not get CPM," said study senior author and professor of medicine Dr. Steven Katz in a University of Michigan news release."


If the reasons given for a bilateral mastectomy are given as "patient peace of mind, avoiding conflict and improved cosmetic outcome", then why are the results so skewed to the surgeon's preferences?

Again, its your body and your decision and not your doctor's

Friday, September 15, 2017

What Does That Symptom Mean?


Right now I am contemplating the additional pain I have been having in my fingers/hands and toes/feet recently. I do not expect I have hand/foot cancer but that my rheumatoid is doing funny things. I am not researching online, I am going to send my doctor a message. That is the mature adult thing to do.

Normal people think that headache or scratchy throat is nothing. But to cancer people a headache is a brain tumor and a sore throat is esophageal cancer. Along with your cancer diagnosis  you learn that Dr Google and Wikipedia are not your friends for medical information.

But with cancer, every little symptom gets a new meaning. And the emotional stress can be amazing. Which is why its time to stop googling symptoms. Ask your doctor instead.

Thursday, September 14, 2017

Narrow Mindedness

I realize that a lot of academia, where medical research often happens, primarily uses Apple computers - desktops, iPads, and iPhones. However just because they use iPhones doesn't mean anyone else does. Hence the problem.

I received an email recruiting women for a study by the Army of Women on the Relationships among Cognitive Function, Lifestyle, and Exercise after Cancer Treatment (ReFLECT+). I said great. Let me see if I can sign up. I greatly appreciate what the Army of Women does and support them wholly. But I can't believe the narrow mindedness as part of their study.

As they recruit for non-white participants, they gave themselves a big obstacle. Look at who can participate:

You can join the Relationships among Cognitive Function, Lifestyle, and Exercise after Cancer Treatment (ReFLECT+) study if you match ALL of these MAIN categories:
  • You are a woman age 21 or older
  • You have been diagnosed with breast cancer at any time in your life. Women who have not undergone treatment, are currently undergoing treatment, or who have completed treatment are eligible to participate in this study.
  • You have access to an iPhone
  • You live in the United States
  • You self-identify as a racial/ethnic minority such as but not limited to African American, Hispanic/Latina, Asian, American Indian, Alaska Native, Native Hawaiian, Pacific Islander, or more than one race
You have to have an iPhone. I googled this and iPhone usage is around 15% of the country. "However, its market share fell from 14.8% in the first quarter of 2016 to 13.7% last quarter."

So they just limited their research pool to less than 15% of the population. And they wonder why they can't find enough patients to participate. 

And we wonder why medical research costs so much....

Wednesday, September 13, 2017

Surviving Life With Ailments

What is the best way to survive ailments? First of all, one step at a time. And take as many breaks as possible to have fun.

That is what I did today. I may have my feet up recovering but I had fun, with my husband.

Today we went to a museum and out for lunch looking at the ocean. My feet are really tired. My knees hurt. My hips are speaking up too.

But by spending a few hours out doing something outside our normal activities it was a nice break. I didn't have to think about any of my medical ailments (until my feet started to hurt) or upcoming medical misadventures - which includes knee arthroscopy in a couple of weeks.

It is easy to get in a rut of medical issue followed by medical issue followed by medical issue. It is impossible to keep going in the medical rut day after day. You cannot do it without leaving your sanity in the hospital hallway.

So take my advice and go do something special. Get out of  your rut and have fun.

Tuesday, September 12, 2017

How Much Do Cancer Drugs Cost?

The line from the pharmaceutical manufacturers have always been that it costs billions to develop new drugs. And they have to recoup their costs for the drugs that don't make it. This is why we have cancer treatments that cost well over $100,000 each year.

But now the truth is out.

Tufts Center for the Study of Drug Development conducted a study on development costs of cancer drugs.What they found is a much lower total for development of a cancer drug.

"A new analysis finds the magic number is $648 million, which is substantially less than an earlier albeit controversial estimate of $2.6 billion for the cost to develop any and all new medicines, in general. 

As with that earlier estimate by the Tufts Center for the Study of Drug Development, though, this latest analysis is already engendering criticism, a reflection of an ongoing debate over true development costs and how these should be calculated. This is important because the pharmaceutical industry has often used R&D costs to justify its pricing."

“These results suggest that pharmaceutical drug development is extremely lucrative and the current drug prices are not necessarily justified by the R&D spending on these drugs,’’ the researchers who conducted the new analysis — Dr. Vinay Prasad of Oregon Health and Science University and Dr. Sham Mailankody of Memorial Sloan Kettering Cancer Center — wrote in JAMA Internal Medicine. 

To arrive at their $648 million estimate, the researchers chose 10 publicly traded drug makers with only one cancer medicine that, at the time of regulatory approval, had no other treatments on the market. They reviewed eligible candidates during a 10-year period beginning in January 2006, some of which were developed internally and others that were acquired. 

They calculated total R&D spending from the first R&D work to the year of approval and also accounted for failures — the cost of drugs that never made it to market. In addition, the researchers assigned 7 percent opportunity costs, which is the return that investors could be expected to forgo if the money had been invested elsewhere while a drug is being developed. This raised median costs to $757 million. 

“The total revenues from the sales of these 10 drugs after approval were $67 billion, more than 7-fold higher than the total R&D spending,’’ Prasad wrote in an e-mail. “The median time on the market for these drugs was four years. Since the median duration of market exclusivity for oncologic drugs is about 14 years, these drugs will earn billions more. Nine out of 10 companies had higher revenues than R&D spending and four companies had more than 10-fold higher revenues than spending.’’ He also maintained that the cost to develop cancer medicines is unrelated to the novelty of the mechanism of action or the efficacy of the drugs. "

Of course there are dissenters to this study's results as always. Personally I believe any study will have its dissenters. It is not that difficult to find something to disagree with on any topic.

But I digress. Although this number may seem astonishingly low compared to the previously cited $2.6 billion, I still think that the truth is much closer to this latest number of $648 million than to $2.6 billion. This latest study, while under scrutiny is probably a new

Monday, September 11, 2017

Oncology Anxiety

It doesn't matter how many years out it is but a visit to the oncologist always is uncomfortable. Its unsettling. Its alarming. Its distressing. Its ominous. I can't come up with enough words to describe it. And its today.

I had my annual mammogram back in July and then saw my surgeon. Technically, I am supposed to be followed by my breast surgeon for life after treatment ends. But his office was difficult to schedule with so after a few years, I dumped him. I also dumped my rads onc a few years back. She was pretty useless too. She used to tell me things like I should stop working so my husband could support me since I had had cancer. Not good medical advice.

I was originally supposed to see my oncologist after my mammogram but the surgeon took over. I had a momentary cancer freakout last winter and ended up at my surgeon's office. He told me his office would now start following me after my mammograms and had an appointment with his office scheduled for the same day. So my oncologist asked me if I wanted to see her office on a different date - to spread out cancer follow up appropriately.

Anyway, so I get to go see my onc's NP today. I am still on (or back on) femara for another couple of years. So today I am a little unsettled, alarmed, distressed, etc. You never know when you see an oncologist what they might find....

Damn.

Sunday, September 10, 2017

Living For Now

I am a big supporter for living for now. Sometimes we are so focused in living for the future - saving for retirement, a rainy day, or whatever. We plan our future for ourselves and our family members - education, get a good job, etc. Our culture tells us this. It seems like the biggest reason we have jobs is to save for retirement.

However once you have cancer a time or two, you start questioning this saving for the future business. Why are we doing this if we may not be here to use it? We save up to 10% of our salaries or more.... And cancer? It could take us any time.

When I was diagnosed with breast cancer, it was my second cancer and I really started questioning all this.... Today I read an article about a British news presenter, Victoria Derbyshire, decided to start living for now after her breast cancer diagnosis and treatment. She stopped saving for retirement and got rid of her mortgage protection insurance.

This is another example of how a cancer diagnosis knocks you off your feet. People may wonder why we get so stressed at a cancer diagnosis. Yes it can kill us so we may not want to plan for the future any more because we might not be there for whatever we have saved. So we like to live for now.

Friday, September 8, 2017

Wait A Minute, Back Up Please!

A new study shows "How a Chemo Drug Can Help Cancer Spread from the Breast to the Lungs". Really? How does that work? Why are they telling me now instead of before chemo?

"Researchers at The Ohio State University studied the cascade of events that lead to metastatic cancer and found clues to why it happens, opening up the possibility of one day interfering with the medication's downsides while preserving its cancer-fighting properties in breast tissue.

The front-line chemotherapy drug paclitaxel sets off a variety of molecular-level changes that allow breast cancer cells to escape from the tumor. At the same time, it creates an environment in the lung that is more hospitable to the cancer cells, facilitating the spread of the disease, the researchers found in a mouse model of breast cancer."

I know chemo drugs are strong which is why they are used to kill cancer cells. But this is just really bad. Why? Because the 'other name for paclitaxel is Taxol. Which I had. Thanks for that push back on the cancer roller coaster. 

And then there is this little disclaimer at the bottom that's supposed to make us feel better.

"She said it's important to recognize that the cancer cells in the study's mouse model are very aggressive and that it would be interesting to test whether paclitaxel also enhances the escape of cancer cells at earlier stages in cancer progression."

Thursday, September 7, 2017

What Does Your Pain Medication Hide?

Last weekend I was a total idiot and forgot to change my pain patch for so long my RA was causing me agony. But I also felt pain in other places that I did not expect. My RA pain was definitely the worst of all.

What this little spurt of idiocy tells me that my pain meds, especially my pain patch, are working and do take care of my pain. This is a very nice thing to know. I am not living in pain (most of the time) because of them.

But then what concerns me is what are my pains caused by. Okay, I am no idiot but I do know that what I felt in my hands and feet is caused by my RA. But then I have pain in other places that I didn't expect. These now need to be explored (not here) but with my doctors to see what causes them - in other words, are they something to worry about.

Pain is your body telling you something is wrong. I just need to know what's wrong and hiding behind my pain medication. Damn.

Monday, September 4, 2017

Breast Cancer Treatment Benefits

Recently it was announced in a draft proposal that the UK's NHS would not cover faslodex to treat estrogen positive metastatic breast cancer. While this may be disappointing to some, at this point I agree with the decision.

The reason given for the decision is:

"While NICE [National Institute for Health and Care] Excellence acknowledged that it can stall tumour growth by up to three months compared to aromatase inhibitors, it said early evidence isn’t strong enough to show that the drug extends survival."

What is the point of spending millions of dollars on patient medication if it does not extend survival? This is a real problem with many new medications where they are shown to treat an ailment but the question often comes down to the length of extended survival. 

If you had metastasized cancer how much money would you pay and side effects would you endure to simply live a few weeks longer? I think we all want to life as long as possible but the costs to be endured can be too high. If you get side effects such as diarrhea where you are forced liquids and electrolytes to keep you alive, is that worth it? Bed ridden in extreme pain? Just because this stupid pill is slowing your tumor growth - and might be keeping you alive longer.

Again, we get to the discussion of quality of life. In my opinion that is one of the most important pieces of medical care. If you are suffering, do you want to be alive? Not me. If you are given so many pain medications that you don't know which way is up because of the other medications you are on, is there quality of life?

I'll be making my own decisions focusing on my quality life thanks.

So I am backing NICE here in this decision to hold off on approval of Faslodex, this fancy new drug that may or may not prolong life.