Wednesday, June 29, 2016

Cancer Moonshot Conference - Today 6/29/2016

I know I have said I am skeptical about this whole moonshot conference idea. Its only one day. And the idea of spending all that money on a one day conference doesn't do much for me. But the conference is today - June 29, 2016 so I am going to see what comes out of it.

I went to their website and found that they are now trying to get people involved. They are asking for ideas. They provided sharing links and hashtags.They are working with CureClick to incorporate social media and get others involved. (If you do not follow along with CureClick to learn about clinical trials and their results, I suggest you do.)

So my current thoughts are:

  • I will see what comes out of the conference.
  • I will try to follow along in the coming months. 
  • I will expect some big breakthroughs in the future.

And will keep my mouth shut in the meantime.

Tuesday, June 28, 2016

That Er+/Pr+ Thing

So I haven always known (well since my diagnosis - before my diagnosis what I knew about breast cancer wouldn't fill a post-it) that have a hormone receptor positive breast cancer had a lot of impact on your treatment protocol. But I didn't know that much about how that worked.

Now I am learning more. In the past, estrogen was considered to be the indicator of breast cancer diagnosis. When estrogen was detector at a biopsy, it was considered an indicator of breast cancer. Now it has been determined that progesterone has a big impact as well.

"Previous studies have demonstrated that estrogen receptors react to the primary female sex hormone, estradiol, by activating genes that nudge cancer cells into growing and replicating. The cells divide faster and live longer, which results in a more advanced state, Greene explained.

The study concluded that when progesterone or progestin is added, an entirely new set of binding sites opens up, allowing the estrogen receptor to work in conjunction with progesterone receptors. The process stops cell reproduction and survival and "our data further suggests that, despite the historical bias toward the effects of estrogen on the estrogen receptor," Greene said. "It’s the progesterone receptor that dominantly controls estrogen activity when both receptors are present and activated.""

Well whoop de doo. This sounds all kinds of complicated. But I think its important.

"During the study, Greene and his colleague Haral Singhal inhibited the activity of both estrogen and progesterone receptors in three groups of mice by treating them with either the estrogen receptor antagonist tamoxifen, an experimental progesterone receptor antagonist called CDB4124, or a placebo. Predictably, tumors in untreated mice grew quickly. Tamoxifen halted tumor growth, but did not shrink them, while CDB4124 had a more complicated effect: It caused the tumors to shrink at first, but after 35 days, they began growing again and ended up 50 percent larger than their original size. A combination of the two antagonists seemed to be the golden ticket: tumors showed “virtually full regression,” according to Singhal.

“These findings,” the study reads, “emphasize the clinical value of assessing both progesterone receptor and estrogen receptor expression in breast cancer samples.”"

Sorry its a bit technical but this is a big change in looking at breast cancer treatment options.

Monday, June 27, 2016

There's Napping, and Then There's Napping

The best semester that I had in college was one when I managed to nap every afternoon. That way I could get up and go to class in the morning, come home and nap, and then study before going out again at 10 pm. I was young but I did get good grades and had a great social life. That is the most napping I have done in my life, until now.

As a rule, these days I try not to nap too much because if I nap, I probably will not sleep as well that night. I prefer just to get my 10 hours of sleep together. However, sometimes when I can't keep my eyes open, I am forced to nap. Or I just nap where I am because I am so tired, I can't move.

There is a difference between fatigue from my ailments and unbending urge to lie down and shut my eyes for a bit. With fatigue, I usually can function enough to lie in bed and read a book.

Yesterday I was fine until about 5 pm when I got too tired to knit and watch TV. That means I was really tired. I got in bed and fell asleep for a solid 1 hour 45 minutes. But then I was up until after 11 because of that nap. I didn't think I got too little sleep the night before but maybe I didn't get enough sleep.

When is napping too much? In the past ten days, I probably have gotten in four 2 hour naps. Is that too much sleep? I don't know. I do feel rested when I get enough sleep. 

Sunday, June 26, 2016

Training the Psychiatrists

I am sure psychiatrists get all sorts of training, but from the patient's point of view, we want them to be trained to understand our problems. My first therapist ever, after a bad boyfriend breakup, was very helpful to me but she hadn't had cancer and didn't get all that part of my emotions. but she was very helpful to me.

After breast cancer, I got a new therapist. She had had breast cancer. She really got that part of me. Then she retired!!!

I tried a new therapist who told me about her ailments more than I told her about my ailments. Then I canned her and found a new one. While she hasn't had cancer, its okay because she understands the rest of me and cancer is not currently my main issue. Actually, I need to rephrase that. Cancer is not my main health issue currently. My main health issue is that my health sucks.

But I digress. This morning I stumbled across an article from The Psychiatric Times explaining breast cancer to psychiatrists. This is a great idea. It discussing its incidence (12% of women world wide).

"To support patients with breast cancer, it is important to understand the trajectory and practical logistics of breast cancer treatment. Psychiatrists should also be aware of possible medication interactions, psychiatric or neurologic adverse effects of treatment, and signs of disease progression—issues that are the focus of this article. "

Um, yes, hello! I have spent a lot of trying to manage medication interactions. Because of all my medications, needing antibiotics gets complicated quickly.

"Adjustment, depressive, and anxiety disorders are the most common forms of neuropsychiatric illness in patients with breast cancer. Risk factors include younger age, receipt of chemotherapy, hormonal disruption (amenorrhea/hot flashes), and marital discord. Symptoms appear to be most prominent at specific points in the course of the illness:
  • At diagnosis
  • At completion of active treatment, when patients are confronted with existential angst and fears of recurrence in the setting of less active follow-up with medical providers
  • At diagnosis of recurrence or metastasis"
Yoo hoo, that end of active treatment where you oncologist says come back in six months and we all fall apart. That is a key point for cancer patients. I'm not thinking about that last bullet, just shutting it out of my brain.

But I am happy to see this. If a psychiatrist has not had the ailment which is the cause of the anxiety/depression for the patient, they do need additional training so they understand.

Saturday, June 25, 2016

Will It Come Back?

Will it come back? We ponder that question. We obsess over that question. We analyze it to death. We dissect that question. We dream about that question. We have nightmares about that question. And no one can tell us anything.

Once you get cancer, you never know if it will come back. Or when. That's what really sucks about cancer.

I did read an article summary recently that discusses some indicators of when breast cancer might recur. A study was done to see if it could be determined which factors contributed to when breast cancer might come back. Some factors were determined to have impact and others not.

A high grade tumor (meaning how aggressive it is on a scale of 1-3) is more likely to recur sooner as opposed to later. A hormone receptor sensitive tumor is more likely to recur later than an ER/PR- one. Smaller tumors were more likely to recur later than bigger ones. All of that sounds fairly logical.

But what doesn't sound logical is that lymph node involvement, patient age, and menopausal status did not appear to correlate to when recurred. We do need to remember we are talking about 'when' it recurred as opposed to 'if' it recurred.

I would have thought that the more nodes involved the sooner the recurrence. I had one tiny little lymph node in the cancer party so this does not help me at all. But otherwise, my tumor was grade 2, ER/PR+, and relatively small at 1.7 cm. So all this adds up to say that my cancer if it recurs is more likely to recur later. And since I am now 9 years out (where all that time went, I have no idea), its all a crap shoot anyway.  I hate cancer. I need to find something cheerier to do....

Friday, June 24, 2016

After A Lot of Deep Thought

As a professional patient, I have met with a few million doctors over the years. I have recently done a lot of deep thought recently as well. I have decided I am glad I never even considered being a doctor.

Never mind the ick factor of having to touch people you don't know and look at all sorts of mystery ailments and figure out what is wrong with them. There also is the issue of medical school and internship - way more education than I would ever want. Besides I deserve all the sleep I can get.

On the plus side of being a doctor would be the ability to find a cure for all my ailments. That would be really nice. Actually it would be phenomenal!

But I digress. Another part of being a doctor is that everyone wants to tell you how to do your job. You would think you have enough education to make your own decisions but no. Medical school might train you on how many bones are in the human body, what the spleen actually does, or what your blood count numbers actually mean with having to look it up.

But according to the rest of the world, it doesn't give you a good bedside manner or how to manage a medical practice or deal with insurance companies. And every patient you see presents symptoms (and attitudes) differently. All their family members want to give you their opinions. Never mind the people that want to sue you if you make the least mistake.

So my ultimate conclusion is that, while I am sure I could be the first to come up with a cure for cancer if I was a doctor, I'll pass. I just want my next doctor to be the one to find a cure for all the horrible diseases of the world and cure me.

Thursday, June 23, 2016

Perkiness and fatigue

Sometimes I wake up and am very perky. This annoys my husband to no end so that if I feel the least bit perky I make sure he knows (I love aggravating him sometimes - part of a happy marriage is being able to annoy your spouse).

Recently I have been dealing with fatigue. I have no idea why I have so much fatigue but I do. I have had three two hour plus naps in the past five days. This includes sleeping fairly well at night. If this keeps up maybe I should go to the doctor... No wait a minute, I have enough doctor appointments these days. If I make another doctor appointment it will be because I am dripping blood or in so much pain I am unable to move (but then how would I get there if I couldn't move?)

Yesterday I had some killer muscle cramps at the gym and was bent over in pain as a result. My hamstrings went into spasm and I could not move. Another woman at the gym noticed and came over to ask if I was okay. I wasn't but I stood still for a while and then tried stretching my hamstrings for a while before I left. When I got home, I went to bed before having lunch. Once I ate, I slept for nearly 2.5 hours.

The 'best' thing about fibromyalgia is that pain gets magnified. So when you get muscle cramps, the pain gets magnified.

But I digress. If I get enough sleep, I might be perky (and if I am, I make sure my husband knows). But I still might need a nap later in the day. If I don't get enough sleep, I probably won't be perky. The real problem is when I am in too much pain to eat, sleep or be perky. Then it really sucks.

Wednesday, June 22, 2016


Here's another exciting new headline: Unlikely drug may block breast cancer in high-risk women. But then as you read it, you end up feeling deflated. Why? Because you find out at the end that it will take 10 years before the results of clinical trials will be available. And that it is based on a very small research pool. 

But here goes. So a drug, denosumab (or Prolia) used to to treat osteoporosis appears to prevent growth of breast cancer in high risk (read BRCA1+) women. This could be a prevention strategy for this group of women. This sounds like fantastic news. 

"For the study, 33 samples of breast tissue with no BRCA1 mutations and 24 samples of breast tissue with the mutations were analyzed."

So its a little tiny group. I am not sure that I am too impressed with the size of this group. And that the results were published based on such a small group. 

You would think that since the drug is approved already it would be fairly quick to be available for this use but since the clinical trials will take so long to see if cancer growth is prevented it will take ten years to get through trials and then FDA approval, and then finally available. 

As the article concludes it might be a solution for future generations. I am just a little deflated as I went from high expectations to a long wait.

Tuesday, June 21, 2016

Don't Believe Statistics

Back in college, I took a statistics class and had to write a paper about the skewing of statistics particularly as done in the media. I think I did pretty well on it. And I did learn not to believe statistics as presented anywhere without thinking about them.

Here's an example: A recent study said that being married or having a college education made you more likely to get brain cancer. I'll bet that result was a surprise to the researchers. But you really need to dig a little deeper into the research to understand that isn't really the truth.

"Using a huge registry of health and other data on all Swedes, European researchers found that people with at least three years of college had about a 20 percent higher risk of glioma (the most common brain tumor) as those with only an elementary-school education. And married men had a 23 percent higher risk of glioma than never-married men." 

This is how they did the research. But it is important to realize that there is more to this than that. Let me clarify on two points: College educated people tend to be wealthier than those with lesser education. Well off people usually go to the doctor more frequently than others, simply because they can afford it. They also might be more aware of differences in their health (slurring words) that would cause them to go to the doctor themselves. Married men also have been shown to go to the doctor more often (at their wives' behest) than unmarried men.

These cancers are also very rare anyway and may not even kill you if you have one. They are slow growing and are often found at autopsy with other causes of death.

So the end verdict on this study:

Being married or educated seems linked to being diagnosed with some kinds of brain tumor, likely because of socioeconomic rather than biological differences — a useful reminder that when studies count diagnoses they’re not necessarily counting every case.

The lesson learned is do not believe statistics. This is why often additional studies are required to verify the results.

Monday, June 20, 2016

I was too tired to blog

I was too tired to blog or do a lot of other things today. I took another 2 hour nap. I also took one on Saturday afternoon.

Last night again I didn't sleep well. I did get up in the morning but felt tired but good enough that I went to the gym. I came home, did some laundry, took a shower. I was trying to be normal.

Then I was trying to watch tv but was too tired. I fell asleep. I did mean to blog but couldn't stay awake. I think I needed that nap. I just hope I can sleep tonight. The downside to napping.

Sunday, June 19, 2016

The Non-Opioid Abusers

Those of us who live with chronic pain take pain medication, including opioids. There has been quite a bit in the news about the growing opioid epidemic which is killing thousands of Americans. Most of those who die are abusers who overdose. The resulting laws trying to restrict access to opioids causes difficulties for those of us who actually live in chronic pain and need the opioids to function.

Could you imagine needing to go back to your doctor's office to pick up a paper prescription to bring to your pharmacy to refill it? That is what happens now. Yes really. Can you imagine being in total pain and having to drive or ride a bus just to get that little piece of paper?

The new laws designed to restrict access by drug users have the unintentional effect of making it harder on the people who need them to function. For someone in chronic pain, who has to limit their efforts and make deliberate choices on how to spend their time and efforts, any extra trips are avoided at all costs.

So what do we do? We cope. We look for alternate therapies that make life easier for us. I am on opioids but mine come in patch that I apply weekly that gives me a controlled dose of pain medication that is essential for my daily activities. I hope more manufacturers step up and come up with more alternative delivery methods which allow pain relief for those in need but does not allow easy access by abusers.

Saturday, June 18, 2016

Getting the 'good advice'

Becky, over at BCBecky blogged about The costs of cancer treatment. I read her post and then commented on it. And then, I started thinking (sorry, I do think sometimes).

In her blog post, Becky talked about the costs of treatment, but not just the financial ones. And the sustainability of keeping up with her current course of treatment. Of course she has advice from people who may not have had cancer. My thought would be talk to the people who have had cancer and had to make the same types of decisions and then make your own choice.

I really think that as those who have had cancer, we need to take our learned knowledge and help others who are facing the same decisions. After a cancer diagnosis, we have gone through so much as we made decisions, coped with the treatment, and are still here to talk about it. So why can't we help others?

In making our decisions, we had to educate ourselves  and go through the decision making process. We learned the 'unsaid' portions of the decisions we made. For example, I do not know a single woman who has gone through breast cancer, with a mastectomy, and reconstruction (not me) who has not said 'I wish they had made sure I understood that part', 'I didn't realize that until after' or 'I don't think I knew it would take so long' and other statements.

Honestly I know there are many decisions I wish I had  known more about my options before I chose. Some of the best advice I ever got was from my friends who had been through the same crap. Because they knew. The doctors couldn't tell me. The nurses couldn't tell me. I think they assumed I would just take their suggestions and be a lemming.

But only by talking to my friends with breast cancer, or whatever ailment I needed to make a decision for, did I learn 'the truth, the whole truth, and nothing but the truth'. None of them had medical training or social workers or anything like that. But the difference was they had been through it themselves. If we could provide 'good advice' to others, that would be great.

Friday, June 17, 2016

Where does time go?

I still think its maybe early May. I had a break coming from my doctor appointments, its spring, lots of time to plan vacations, and more.

Where does time go? Its mid June which means we are almost halfway through the year. How did that happen? The last few weeks have been a blur. I was not productive last week because (a) I needed a break, and (b) we had guests. All I did was have fun. I ignored pending doctor appointments, volunteer work, and the rewrite of my disability application.

Earlier this week I had doctor appointments (so far I am fine). I rewrote my disability application with some help (which the lawyer actually thought was good). I worked on my volunteer work but got stuck. I did make some vacation plans for us in early August. I also need a lot of rest after the past week.

Now its Friday (but feels like it should be Wednesday) and I have lots of work to do. I have friends coming over in a few hours. I am not sure I will be done in time.

I think I need to go back and dream about early May.

Thursday, June 16, 2016

A Conversation with My Endocrinologist

Yesterday I saw my endocrinologist for my annual visit. At the end of her exam we had a brief conversation on being followed for thyroid cancer vs being followed because I have no thyroid.

I had an endocrinologist until the mid-1990s and then she retired and I had a primary care (and didn't need any other doctors for a long time - much different than now). In 2009, the Thyroid Cancer Survivors Association had their annual conference in Boston so I volunteered and attended it. Everyone else there talked about what their endocrinologist said to them and, their blood levels, and how they tweaked their meds all the time. Then I realized that I didn't have an endocrinologist and wondered if I should.

I went to a few of the sessions, including one lead by an endocrinologist who talked about various aspects of what they do. At the end of the session, I went up to the presenting doctor and asked him if he thought I should have an endocrinologist and he said yes. So I found a new one and started getting regular follow ups. Now seven years later, I go for yearly visits and ultrasounds every couple of years.

Yesterday, I asked Dr. C, my endocrinologist, about possible recurrence after all these years. She said its possible, but chances are slim, but there really is no real research data on this. So that was pretty inconclusive. We also talked about the new rates of diagnosis for thyroid cancer. She feels that this is largely due to new technology which allows for smaller nodules to be seen.

Back when I was diagnosed, ultrasounds were not even available. Thyroid cancer was usually only found by seeing a bulge on the patient's throat. This was then followed by a surgical excision. Most were benign but not mine.

We also discussed the fact that while I do need an endocrinologist because of my lack of thyroid, it is uncertain if I really need the cancer follow up. This includes ultrasounds to see if there is any regrowth (we really do not want that). But since cancer can be very sneaky, you never know. Thyroid cancer has been known to recur decades later even though there is no supporting research. So we will continue the cancer follow up part for now with ultrasounds every couple of years.

I will also receive life long blood work for my replacement thyroid hormone. No way around that one.

Wednesday, June 15, 2016

How Do You Sleep?

I went to my meds therapist on Monday - she is the one who prescribes me a sleep aid, among other things. My reply to her question on how I sleep was that I don't. If I take half a sleeping pill, I might sleep most of the night but if I wake up, I'll be up for hours. If I take a whole sleeping pill, I usually sleep all night but might run into a sleeping pill 'hangover' the next day.

Last night I took a whole sleeping pill. I woke up at 230 am and let the cat in. I never got back to sleep. My husband's alarm went off around 5. I got up with him, drank a cup of coffee, attempted to read email, and fell back to sleep (after that cup of coffee).

I then woke up again around 9. I only woke up at 9 because the cat (the little evil one) was walking around meowing because he wanted to go outside. But I do I feel now? Much better.

Unfortunately this is not an unusual occurrence. This is my life. Its a vicious circle:
Going to bed early because I am really tired - take a sleeping pill - wake up in the middle of the night - be really tired - and needing to go to bed early.

I need a nap today.