The Little B****rds

I'm sorry I just don't have a better word for cancer cells which spread.We'll just call them the little B's. Anyway, some new research has been done on metastatic cancer cells. The goal is to find them and snuff them out, obviously.

Dr Rauscher of the Wistar Institute's cancer center recently discussed some new information discovered about breast cancer metastatic cells:

"Solid tumors such as breast cancers grow their own blood supply, a process called angiogenesis. It's clear that breast tumors shed malignant cells into the bloodstream. And it's clear that most of these cells get killed by the stress of shearing off from the primary tumor, or by the immune system. But in some patients, a tiny subset of sloughed-off cells develop the colossal powers that are required to become metastatic. At what point does that happen? "That's one of the questions we still have to answer," Rauscher said.

Recently, the ability to rapidly sequence whole genomes (the entire genetic code of a cell) has enabled scientists to analyze differences between primary tumor cells and metastatic cells. Surprisingly, Rauscher said, "there is not much genetic difference."

That finding has big implications. First, metastatic cells may not have a distinctive mutation that can be used as a neat molecular target for new drugs. Second, the important difference between primary tumor cells and metastatic cells may involve which genes are turned on and off by biochemical processes. These outside-the-gene activation processes are called "epigenetic."

Depending on the organ the metastatic cells travel to, varying genes may be activated because each organ has a different "microenvironment," controlled by distinctive cellular signals. That brings up another question: Why do certain types of metastatic cells gravitate to certain organs? Metastatic breast cells, for example, often colonize the bones first, then other vital organs. So far, Rauscher said, the explanations are unclear.

When these incredibly versatile marauders arrive at a new organ, they have the characteristics of all-powerful stem cells. That means they can go dormant for long periods, then suddenly start multiplying uncontrollably. While dormant, metastatic cells are basically invisible to the immune system, as well as impervious to chemotherapy, which works by disrupting the DNA of fast-multiplying cells.

A significant recent discovery is that metastatic cells don't travel and resettle individually. Rather, they detach from a tumor and move in clusters, the better to invade and take over a new microenvironment. It's sort of like moving a whole house, rather than just the furniture, Rauscher said.

While metastatic cells may not have a neat genetic Achilles' heel, researchers areuncovering vulnerabilities. "One therapeutic approach is to find the signals that turn dormant cells on, then block those signals," Rauscher said. "In mice, we've done this.""
So there is work in progress. If its up to the mouse stage, it is progress. But it still has a long way to go. Unfortunately.

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.

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.

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. 

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.

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....

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.

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.

Deflation

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.

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.

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.

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.

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.

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.

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.

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.

Sometimes I Feel I Am Being Lazy

I run into the problem that I feel like I am being lazy because I don't do much during the day often. Yesterday afternoon I felt I should have been doing more than just sit around most of the time. But I really was not up to more. Yesterday I did not have a good day. My right hip and spine were giving me so much pain I spent the afternoon doing a lot of nothing. I even used the drive through at Walgreens to pick up my prescriptions so I didn't have to walk through the store. Maybe I should have taken fewer books out of the library.

I was also really tired from having fun. I think I got about 10 hours of sleep last night. I was also exhausted. Completely exhausted. I need to do a lot more 'laziness' today and try to be productive while not moving around and recovering.

Today I am doing my usual Tuesday schedule which means I have nothing planned. I have to finish doing the laundry but I also need to rest. Usually on Tuesdays I have time to start projects that I can finish over the next few weeks. I think this week I will not start any projects. I will watch my garden grow as I do laundry and a lot of nothing.

And try not to feel lazy. But I need to be lazy. Its called 'recovering'.

More from ASCO - Metastatic Breast Cancer Database

Metastatic breast cancer is the kind that kills people. Little research seems to be going on for these patients (both men and women). This is a huge frustration for the metastatic breast cancer (MBC) community. However it seems that is about to change.

A poster session at ASCO last week discussed a new MBC program - a database being collected of those with MBC to help learn more about them and find new treatment strategies.

"“Our goal is to understand the biology of metastatic breast cancer and find new treatment strategies,” Nikhil Wagle, MD, of the Dana-Farber Cancer Institute told the ASCO Daily News during the “Cancer Prevention, Genetics, and Epidemiology” Poster Discussion Session on June 6. “One of the ways we can do this is by creating a database of clinical information that is linked to genomic information for patients with metastatic breast cancer and share that with the world so that lots of researchers can use it to make discoveries.”

To increase the volume of tumor samples from women with this disease, the Metastatic Breast Cancer Project was designed to capture information from the vast majority of metastatic breast cancer tumors that are not available for research, largely because most patients are cared for in community settings where genomics studies are not conducted."

I think this is a great idea. Those who wish to participate are sent a saliva collection kit so they can provide a DNA sample and then they release their medical records and tumor information. They study then looks at outliers - those who best responded to certain treatments. But I am sure there is much more. I did find a link to the project's website.

I am elated to learn of this. The metastatic community has almost been ignored in most research. And this is a great step in the right direction.

Recovery Mode

One of my oldest and best friends came to visit with her husband. Now I need to recover. No alcohol. No walking around. No standing. No doing anything. And only salad for the next month.

Also I need to rest. They left under an hour ago. I am lying in bed with my feet up. Waiting for a pain pill to kick in so I can begin to move again.

And I forgot I have a doctor appointment tomorrow morning. Damn.

However I spent the last five days having fun and not being any kind of patient. It was worth it.

I Overdid Things

Who me? Yes. But I had a lot of fun. We have house guests and yesterday we went to the Boston Harbor Islands and out to dinner. I had planned not to do too much but I guess I don't follow even my own directions too well.

We drove to Boston and parked in the really close but expensive parking garage. We got on the boat and I sat. Then we went to Georges Island where I sat and did not walk around. Then we got back on the boat and I sat. Then we went out to dinner and came home. I was exhausted. Everything hurt.

Today I will pay the price. I will do a lot of nothing. Well one of our house guests is going to show me how to use my new 4 harness loom (it looks very complicated). Another friend is coming over for dinner and to knit. I will do a lot of sitting and maybe even lie down for a few hours. Tomorrow after brunch I will also plan on lying down.

But it was a great time.

New from ASCO - Widely Used Breast Cancer Chemotherapy Falls Short

I held my breath while watching this video. (If I could figure out how to embed it I would.)

There has been a lot of discussion over the years of the benefit of anthracyclines in breast cancer chemotherapy because of potential cardiac damage - in addition to all the other nasty side effects it may cause. Doxorubicin or (Adryamicin or Rubex) is known as the 'red devil' for its red color and it is so toxic that when administered by IV the nurses wear protective gear. (You feel so safe that they are wearing protective gear and it is going in your veins.) Its also the one that causes hair loss and all sorts of other fun.

Announced at ASCO, new research on the research on it has shown that by adding anthracyclines to the taxane/cytoxan combination has a significant positive impact on long term survival. I held my breath because I wasn't sure if it was going to show me that I had received what is now seen as the better combination.

I really hate this when this happens. Some had recommended removing anthracyclines from breast cancer chemotherapy protocols because of the damage because the potential cardiac side effects. Now it seems that was the wrong action to take.

Changes like this cause cancer patients to second guess their doctors. You can't go back and do the same chemo all over again with the anthracyclines added. It doesn't work that way. The doctors were following the best practice standards at the time. But then it leaves us patients in the lurch. Thank you very much!!! Triple grrrr......

My Mini Vacation is Ending

I have enjoyed a few weeks without a doctor appointment. I have had 22 appointments so far this year (I have a spreadsheet of doctor appointments to keep track of my co-pays and out of pockets for taxes.) Then I haven't had an appointment for two weeks and don't have one for another week. So its been a three week break. I like that.

Then next week I have three appointments followed by six more in the next six weeks. That's more normal for me. Last year the magic number of appointments was 67, the year before 58.

So if I go to the doctor so often, shouldn't I be healthier?

I forgot to get excited

There were two recent events where I forgot to get excited. First I forgot one of my cancerversaries last week (9 years if you care). My other cancerversary is in August and will be 35 years. I try not to focus on them in my life. My life is not about cancer. Its about me. And I don't want to focus my life on cancer.

Then I forgot National Cancer Survivorship (S-word) Day which was yesterday. I seriously think this is a 'Hallmark' holiday. Something some marketer came up with to sell more 'crap' (I mean 'stuff'). Are people supposed to send cards, chocolates, and flowers? Should we have parties with balloons, cakes? And can we name it without the disputed S-word?

I didn't get excited so I really just forgot them both.

$107 Billion on Cancer Drugs

I did not make up that number. That is how much was spent on cancer drugs world wide last year. Is it really worth it? Does it sound normal to take a drug that costs $10,000 per month? And that $107 billion reflects a 11.5% surge from new drugs introduced last year.

A recent study was done for the National Institute for Health revealed a lot of questions, not a lot of answers. And the real question is are cancer patients getting their money's worth. The main goal of any cancer drug should be a longer life - which would be a cure. Correct me if I am wrong, but that is how I see it. Why else would we want these drugs? Its nice when they reduce pain and make us feel better as well but we really hope that we will live longer.

"The report from IMS Institute for Healthcare Informatics highlights 70 new cancer treatments, treating more than 20 types of tumors, all approved in the past five years. In the United States, where cancer drug spending was $37.8 billion last year, those new drugs alone account for $9.4 billion of the increase since 2010.""

"... Not all approved cancer drugs are alike. Some may provide profound benefits, lengthening life by years; others may significantly shrink a tumor, but increase patients' chances of survival only by small amounts.

Prasad's work has found that the high prices of new cancer drugs don't reliably reflect their novelty or how well they worked in trials. One of his studies, published last year in JAMA Internal Medicine, examined 36 drugs that were approved between 2008 and 2012 based on early indicators that they were working, such as evidence that they shrank tumors. Such measures are meant to speed up drug approvals, but there's no guarantee that a drug that temporarily stops a tumor from growing will extend lives. Only five of the 36 drugs in his study lengthened patients' lives, despite a median of more than four years of follow-up study."

So why are we spending all this money if most of them don't make us live longer? That's not worth $107 billion.

Too Much Pink!

Here is an example of what too much pink has done so much wrong: What is the biggest killer of women? If you said breast cancer, you are wrong. Breast cancer kills one in thirty women. But heart disease kills one in seven. Yes you read that correctly.

So much money and focus has been put on the stupid little pink ribbons that there is now a misconception in the public that have hidden heart disease as the number one killer. As a result, more focus is being put on a mammogram is a life saver instead of a thinner waist.

Obesity can contribute to worse outcomes in breast cancer but it definitely contributes to heart disease. Healthy and active life styles not just help improve outcomes in for breast cancer and even more for heart disease.

Personally, I think we should get rid of 99% of all the pink crap and move the focus to heart disease which is killing far more of us. (But still go for our mammograms.)

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

Quality of Life

I don't know why this took a research study to figure it out. One of the key factors in determining health outcome is health related quality of life for cancer people.  A recent research paper was published which analyzed quality of life factors in multiple cancer trials.

"Of the 30 trials included in this analysis, 3 trials assessed a total of 321 breast cancer patients of any type or stage. After accounting for multiple variables, physical functioning, emotional functioning, nausea and vomiting, and global health status were all predictive for survival among breast cancer patients.

Physical functioning, as assessed by the questionnaire, includes the ability to perform various degrees of effort, such as walking or carrying heavy loads, as well as basic functions such as eating, dressing and washing." 

At my second cancer diagnosis, physical functioning was not an issue. Now, its a different story, walking any distance or carrying things is much more difficult.

"Emotional functioning includes attributes of depression and mental well-being, such as difficulty sleeping and often feeling worried, tensed or irritable."

After one cancer diagnosis, I knew better and made sure I took care of this part. 

"Often feeling nauseous and vomiting were also found to be predictive of worse cancer outcome."

Nausea was my 'frenemy' during chemo. I spent more time feeling nauseous (but that didn't mean I lost any weight). And I'm still here so the jury is still out.

"Global health status includes attributes of both functional and emotional well-being, as well as the effect of disease or treatments on family life, social activities and financial situation."

Family and social stuff took a back seat during treatment because they were less important to me. I did what I could but my focus was on getting through treatment. It was a bummer that I got laid off two weeks before my diagnosis so there was a financial issue but I did get a part time job during treatment that helped.

Back to the emotional part. At my second cancer diagnosis, I knew what it was emotionally like to go through a cancer diagnosis, not cope with it, ignore it, and waste a lot of time on it. I also knew because of how I didn't deal with it, that it took a long time for me to learn to accept it. 

But at my second cancer diagnosis, this was one area where it I was in control and I could make a difference. So I did. 

One of the most important things in my life to this day is my quality of life. This has lots of components but (in the words of Donald Trump) it is HUGE! Why? Because it is in my control. 

The components include everything from where I live, what I do, who and what I include (and exclude) in my life, how I handle my treatments, what doctors I see, what I do to make me feel better. I make a point of getting rid of any one or anything that is toxic in my life. Stressful situations are avoided if possible. Making sure I do anything and everything I can to make me feel better emotionally, which is tied very closely to how I feel physically.

So, my advice is that if you feel like crap or are facing any kind of crappy diagnosis, focus on your quality of life.

Would You?

So if you had an incurable cancer and knew you were going to die in the next year, would you try unproven medications? By unproven I mean not yet FDA approved for use on humans so there is no way of knowing it wouldn't kill you sooner?

A young man, age 20, from Rhode Island is in this position. He has an inoperable tumor on his brain stem and a very bad prognosis. He found a renegade doctor who has been under review for a long time due to his previous unproven treatments. The patient is willing to see if he can contribute to help future patients. He started this doctor's treatment and then it was stopped by the FDA. Through a lawsuit he was able to restart the treatment.

"The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?

“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”

For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”"
So my question is would you, if you were in the same position? I am not sure I would. While I like the idea of helping others, if the treatment was so unproven that it might kill me sooner, I am not sure how I would handle the added stress. I am being honest here. One part of me says yes, the other part is saying not sure.