If Breast Cancer Doesn't Kill You, Heart Failure Might

File this in the category of the stuff we should have been told but weren't. Many women diagnosed with breast cancer, are given chemotherapy as part of their treatment. One of the drugs commonly used is called Doxorubicin, also known Adriamycin or Rubex, or as us patients have been known to call it 'red devil', which carries a significant cardiac risk.

When you are given it in chemo the nurses put on masks and special gowns to protect them. No thought of the patients. I was told it could cause some cardiac issues but now I am learning that the danger is very real and very concerning.

"“Both breast cancer and cardiovascular disease share risk factors,” said Dr. Susan Gilchrist, a cardiologist at MD Anderson whose research focuses on cardiorespiratory fitness in cancer patients. "That includes weight gain, loss of exercise or sedentary behaviors, and metabolic dysfunction, which are a risks factor for breast cancer recurrence and cardiovascular disease.”

The greatest risk is from the chemotherapy drug doxorubicin, an anthracyclin. Eight treatments increase heart failure risk by 5 percent, up to a 48 percent increase after 14 doses, the doctors wrote in the statement.

But women with breast cancer are not encouraged to avoid treatment."

So there is a fairly significant risk of of cardiac damage but they are not going to encourage us to skip that treatment? If the you don't die of breast cancer, heart failure is more likely to kill you. Instead of skipping adriamycin for the benefit it gives, the advice is now to talk to your doctor. The problem with that idea (which is obviously written by someone who has not had cancer) is that patients with cancer care about only one thing when first diagnosed: get the effing cancer out of my body.

"“Any patient who is going to undergo breast cancer treatment — whether they have heart disease at the beginning or not — should be aware of the potential effects of the treatments on their heart,” said Dr. Laxmi Mehta, chair of the AHA writing committee and director of the Women’s Cardiovascular Health Program at The Ohio State University in Columbus, Ohio. “This should not deter or scare patients from undergoing breast cancer treatment, but should allow them to make informed decisions with their doctor on the best cancer treatment for them.”

With the statement, the Heart Association hopes to change perception of the biggest threats to women after beating cancer. Breast cancer survivors, over 65, are more likely to die from cardiovascular diseases, such as heart failure, rather than breast cancer."

That does not make me happy at all. I survive cancer and chemotherapy so I can die from heart failure? 

“We want patients to get the best treatment for their breast cancer,” said Mehta. “Everyone should have a conversation with their doctor about what are the side effects.”

Sorry not good enough. We need a better treatment for breast cancer that doesn't have such a hig risk of heart failure.

The Road Through Chemo

Everyone's road through chemotherapy is a bit unique. We all face our demons of nausea, fatigue, hair loss, and emotional ups and downs differently. We struggle through. And then we somehow make it

I am always interested in hearing about other's chemo misadventures. Stephen Blyth wrote about his chemo story in the Boston Globe. He begins with the advice from the National Cancer Institute:

"The National Cancer Institute tries to be helpful: “At some point during chemotherapy, you may feel: Anxious; Depressed; Afraid; Angry; Frustrated; Helpless; Lonely. It is normal to have a wide range of feelings while going through chemotherapy. After all, living with cancer and getting treatment can be stressful.”

These words made me want to yell. Do they not understand? It is not remotely normal to see only bleakness, to be continuously angst-ridden, and to lack the spirit even to say good night to my precious daughters.

“Many people find that light exercise, such as walking, riding a bike and doing yoga, helps them feel better.” This advice enraged me: The very idea of exercise was laughable. Each night I would resolve to walk round the block tomorrow. But in the morning I would lie unable to rise, unable to sleep, taunted by piles of unread, unreadable books by my bed. 2.30 p.m. 5 p.m. A shuffle downstairs for a bowl of cereal, the act of eating an unexpected respite, then back to bed. My wife was unwavering in the face of such misery: You will feel better, it will all be OK. I knew she believed this, but I did not."

He clearly starts faced with the fact that much of the advice for cancer patients comes from people who do not have a clue. Clearly the advice from NCI is in that category. This is one of the things that all cancer patients learn - people who haven't walked the walk, are unable to talk to the talk. They do not have a clue.

But as you read through his story you see how he learns to get through it. He gets a good social worker who gives him advice and supports him as he goes through his infusion. Her advice is one task a week - send one email. That makes things manageable. I can relate. I could do one thing a week while in chemo.

He learned that it is normal to deal with the emotional side of chemo. He meets a new friend along the way who told him when he went through chemo for lymphoma, he struggled as well emotionally. "“I found the nonphysical effects of chemo the hardest. Psychologically I fell apart.” I felt another flash of self-compassion. So it’s OK to be like this. I had been given a lifeline." 

Finally he makes it through. His brain starts to clear, he is returning to life. I cannot say returning to normal because you can't. I just really like his descriptions of his chemo adventure. He put into words what I could not - the ups and downs of cancer.

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."

Walking During Chemotherapy

So back when I was in chemo, and for many years before diagnosis, I used to go for a daily walk. That was when I was healthier (I only had two cancers, not RA and fibro). When I was healthy, I would walk between 4-6 miles each day. Many friends didn't like walking with me because they claimed I walked too far and too fast. My husband would call my walks 'death marches'.

But I digress. During treatment, I walked every day I could. I mean on days I had surgery I didn't always feel up to walking. During chemo, often my walks were shorter because I felt like crap (a technical term). My biggest side effect during chemo was constant nausea and inability to be in the same room as scallions. I did have some neuropathy but not too bad and my finger nails and toe nails took a beating.

Now there is a new study (because we always need more research) that shows that breast cancer patients who go for daily walks during chemo had fewer neuropathy problems than those who did not walk.

"The study, involving more than 300 cancer patients, was presented at the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago.

Investigators in the exercise study directly compared the neuropathic symptoms in non-exercisers to the pain among patients who took part in a specialized six-week walking routine with gentle, resistance-band training at home.

The exercisers reported significantly fewer symptoms of neuropathy – which includes shooting or burning pain, tingling, numbness, and sensitivity to cold – and the effects of exercise seemed to be most beneficial for older patients, said lead author Ian Kleckner, Ph.D., a biophysicist and research assistant professor in Wilmot's Cancer Control and Survivorship program."

So maybe I was on to something. The nurses and doctors all appreciated the fact I went for walks and encouraged me to keep walking. Currently oncologists and patients spend more time talking about walking during chemotherapy. A daily walk also provides the benefit of reducing the constipation that often accompanies chemo. 

"Kleckner, a longtime drug-free body builder and former college rugby player, said he's committed to understanding more deeply the benefits of exercise for cancer patients. "Exercise is like a sledgehammer because it affects so many biological and psycho-social pathways at the same time – brain circuitry, inflammation, our social interactions – whereas drugs usually have a specific target," he said. "Our next study is being designed to find out how exercise works, how the body reacts to exercise during cancer treatment, and how exercise affects the brain.""

So my advice is during chemo, go for a walk. In addition to helping with neuropathy, it can help reduce your stress. Actually I think my advice is as soon as you are diagnosed with breast cancer start going for a daily walk.

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......

What would you do?

Here's the scenario. You had cancer once and chemotherapy almost killed you so you swore you would never do it again. You get a new cancer or a recurrence and the oncologist recommends more chemotherapy. Would you do it?

This is the case of a friend of a friend. Apparently the first rounds of chemo nearly killed her by causing life threatening diarrhea for weeks. Her doctors told her a week or so ago, its back and want her to restart chemotherapy. She said no.

My friend told me this story as she is trying to find her so she can talk to her. I can completely understand the situation.

My first inclination would probably be to refuse more chemo if I had nearly died the first time. It might take a lot of convincing to get me to try it again. I would want to know what would the doctors be able to do to help prevent of the situation. I mean would I rather die from diarrhea or from cancer? I'm being real here.

Us cancer people may make what others consider weird decisions and discussions. We have already faced a potentially deadly diagnosis. Sometimes the treatment is pretty nasty. I mean its the slash, poison and burn - surgery, chemo, and radiation. Its no fun. You feel like crap. You lose your hair. You deal with radiation burns on sensitive body parts.You may be alive during treatment but you certainly aren't living.

I know I would have second thoughts and look for options that wouldn't be as harsh. What would you do?

A day at the hospital

Over the past two days I have spent several hours at the hospital (not for me). Sometimes I drive other people there.

It was a bit of visiting cancerland on Wednesday as I was in the infusion area. One of the nurses asked me if it was weird to be back there and brought flashbacks. I said not really as its been long enough. And that is true. I am okay with it and it doesn't bring huge flashbacks. As long as I am not the one in the big chair with the IV in my arm.

Yesterday I was getting us tea in the cafeteria, there was a woman in front of me in line wearing a pink and white striped shirt, with a pink baseball hat over her bald head. She was clearly ready for Pinktober. And comfortable showing the world her ailment.

While waiting in the radiology department, we all got a snicker as a man walked out of the dressing room and brought his shirt and shoes to his wife. I could understand the shirt but not the shoes. Why walk in stocking feet in the hospital? Icky.

Later, in the lobby there was a woman in dressed in a hospital gown at the ATM machine with her IV pole. She was clearly a patient who went out for a walk to get some cash so she could go shopping at the gift shop. (Mental note to self, bring debit card for shopping at next inpatient stay.)

I made some small joke about taking an IV pole out for a daily walk as she went by. She replied with "they don't talk back and you can take them anywhere". Very true.

Enough hospitals for this week. I think all my appointments start next week. Crap.

Did chemotherapy change your body?

A week or so ago, I had asked a doctor about change in your body due to chemotherapy. A friend and I had the same discussion yesterday. Does chemotherapy change a person's body in more ways than we think?

I am talking about food and medications to be specific.

Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.

More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:

• prednisone - also used to treat RA flare ups as well as allergic reactions
• plaquenil - an old school RA drug
• voltaren gel - anti inflammatory used to treat specific areas of pain and inflammation with RA
• adhesives - as used on pain patches

I was given both prednisone and plaquenil at the same time when first treated for RA. I reacted to both. At the same time. How (not) fun.

And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.

If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.

I am petrified of concerned about any allergic reactions. They seem to become more and more frequent as time passes. And since I can't be given steroids or benadryl for allergic reactions, there are other drugs which I can take but not the first line treatments. this is one of the reasons I always want to go to the same hospital which has all my medical records. 

But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told  us before chemo that we could expect these changes.

Unemployment after chemotherapy

In May 2007, two weeks prior to my breast cancer diagnosis, I was laid off from my full time job. That is the last full time job I have worked. I was a rocket scientist and decided I could job hunt between surgeries and while going through chemo. I ended up returning to a part time job I had held before - lucky me, they had an opening.

Now it turns out I am not alone. New research (because we always need new research) shows that women who undergo chemotherapy for breast cancer are much more likely to become unemployed. (They didn't tell us about that little factoid when we were making treatment decisions.)

"Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.

About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.

The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo..."

"The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston."

In my case, I worked two part time jobs for a total of about 30 hours/week for a few years after chemo and radiation ended. Since my rheumatoid and fibromyalgia diagnoses I have cut back to one part time job for 15-18 hours/week. Sometimes that is even difficult.

Even with out RA and fibromyalgia, I am not sure I would be able to do my previous jobs again. As marketing director for a medium sized non profit, I was multi-tasking, putting out fires, and jumping through hoops as I hands on managed and over saw an on-and offline marketing plan. My brain is fried. I get tired. My chemobrain kicks in and I have no memory of what I did 10 minutes ago. I don't trust myself to do as much as I used to.

Now I do marketing for a small family owned business. When I took the job, we discussed the fact that it was clearly a step back for me career wise. I told them my life had changed in that I had gotten married and was looking for a job where I wasn't traveling, wasn't managing a bunch of people, and could go to work and go home. That has become even more real. 

Now I leave myself notes all over the place on what needs to be done because there is no way I could remember it all. I have flexibility to go to doctor appointments and for the days when I am too tired. I can manage my schedule around my health issues. And I don't have to worry that I might overextend myself because I can handle my little job.

This new research shows me that I am not alone and there are many other women out there who don't work or work in lesser jobs because of chemotherapy.

Being prepared for the realities of chemotherapy

I have always thought being proactive was a good thing. Planning ahead is good, not bad. I try to do this whenever possible - occasionally my husband has accused me of hoarding because I stock up when things are on sale.

Sometimes this is not possible. An example of this is when a cancer diagnosis turns your life upside down. You hop on the cancer roller coaster and are sent to surgeons, medical oncologists, radiation oncologists, and more. You are told it will be stressful but nothing prepares you for the realities of chemo.

In chemo, you go from feeling normal to feeling like you are run over but a bus and a herd of elephants, several times. You lose your hear, your brain, your fingernails, your appetite, and sometimes question your own sanity. You go from being able to get through your day to day life to gasping for breath as you walk up a short flight of stairs. Go read about Jamil and what chemo did to him - going from triathlete to chemo patient.

Its like there is this big secret world of the chemotherapy patient. Nurses and doctors can't tell you exactly what it will be like because every cancer is different and every patient is different. And because as medical professionals and HIPAA, they can't tell you all the nitty gritty details. Its just not possible for them.

But along comes Chemoflage where they help prepare women for chemotherapy - a bit of proactivity. Its a standalone educational program for women undergoing chemotherapy according to their website.

Unfortunately this is based in Atlanta but I would love to see it nationally. This is the kind of program that would help any person going through chemotherapy. Being a bit more prepared for chemotherapy would be a huge asset.

We can learn from the children

I found this article written by an adult with a pediatric cancer so she was in the pediatric cancer ward with all the kids with cancer. It was an educational experience for her with her cancer avengers and the article is a learning experience for the reader.

The author, Ann Graham, moved into the pediatric ward for a year of treatment:

"Then I became one of them: No hair. Giant, treacherous scar. Wheelchair. Ever-present IV pole, and dusty-rose colored kidney-shaped bowl to throw up in. These were all outward signs of a fraternity of warriors that no one wants to belong to. They all were enduring the same grueling treatment I was -- only they were, on average, 10 years old.

This fraternity of Cancer Avengers was wise in ways beyond their years. When faced with the courage and bravery of these little superheroes, I had to give myself the "Put your big girl pants on" speech more than once.

On my first day of treatment, while I was scrolling through my Facebook feed by the fish tank, two boys next to me started discussing their Make-A-Wish requests. Adam, about 12 years old, had just returned from a rainforest trip and asked what Sam's wish was going to be. Sam said they couldn't give him what he wished for. Adam disagreed, enthusiastically conveying that any wish could be granted. Sam stood firm: It was not possible.

Well, what is it that you want anyway? Adam wanted to know. By now, I also wanted to know.

"I want normal," was Sam's answer. "I want to go to school and basketball practice, complain about my parents and homework and turn 12.""

What do adults talk about whenthey ahve cancer? They talk about cancer and obsess about it. Children are different:

"I never got depressed with the Cancer Avengers. They never talked about cancer. They talked about friends, music, sports and Spiderman. Hope prevailed in Pediatric Day Hospital."

They have hope. They are wise beyond their years.

And it won't cure you

I wonder how doctors are communicating to patients about the benefits of late stage chemotherapy. A study (because we need more studies) last year showed that 69% of late stage lung cancer patients and 81% of late stage colorectal cancer patients did not understand that their treatment was not likely to cure them. Obviously there is some kind of communication gap here.

The question is are the doctors communicating but the patients aren't hearing it or are the doctors not communicating? I am not too sure.

I think the patients want to hear the good news and may not really hear what the doctors are telling them - that it will only gain them a few more weeks or months of life at best. Would you really want to hear that? Probably not.

Also, the doctors have a fine line to walk. When one treatment stops working or its time to restart treatment due to disease progression, what do they say to the patient? This treatment option at best will last six months and then if your disease stabilizes, you can expect another six months after that? Or do you omit that part?

What do patients want to hear? I have a friend who told her doctors no numbers and didn't know her cancer staging for about three years after diagnosis - even through surgery and chemo. It took her a long time to want to hear.

Another friend is restarting chemo this week. She finished chemo for the third time last November. Her latest PET scan shows progression so her doctor is putting her back in treatment for six months. After three months she will have another PET scan to see if the chemo is working. And then what? If the treatment works she will just wait and have another scan every three months. If it doesn't work, the unsaid will happen. I think she is finally realizing that chemo only buys her more time. But I'm not sure she would admit it.

But if it was you, would you want to know that your treatment will only extend your life for a few more weeks? That it won't cure you? I think I would want to know the numbers and understand that it wouldn't cure me.

New Breast Cancer Guidelines

The St Gallen International Breast Cancer Guidelines were recently updated to include the Oncotype DX test for breast cancer as the only screening tool for women with early stage ER+/Her2- breast cancer to determine the benefit of chemotherapy.

On some levels this is great news but again it is not for all women. The criteria for the Oncotype DX test for breast cancer are:

"You may be a candidate for the Oncotype DX breast cancer test if you are medically eligible for chemotherapy and:

• You have been diagnosed with stage I,II or IIIa invasive breast cancer.*
• Your breast cancer is estrogen-receptor positive (ER+) and Human Epidermal growth factor Receptor -negative (HER2-) and you do not have lymph node involvement (also known as lymph-node-negative breast cancer).

        OR

• You are a post-menopausal woman recently diagnosed with node positive, hormone-receptor-positive, Human Epidermal growth factor Receptor -negative breast cancer"

The problem is that while most women have ER+, Her2- and node negative breast cancer, not all do. For example, I was not given this test because I had one tiny positive lymph node. Apparently they are starting to do some testing on women with node positive disease. The Oncotype DX test is also available for colon and prostate cancer as well.

I have digressed. I do like the fact that this test is available for some if not all. I do like the fact that it is covered by most insurance companies. I do like the fact that it helps determine if a patient will benefit from chemotherapy before they receive it. I do like the fact that it is part of standards for treatment.

I do not like the fact that it is still part of the conversation about treatment - do you remember the little analogy - an ounce of prevention is worth a pound of cure? Why can't we put that into the guidelines?

What if Chemo came the last resort instead of the first wave of treatment?

That would be awesome. Right now most cancers are automatically treated with chemo, radiation and surgery. But with the development of individualized treatment and molecular medications, chemotherapy may be going the way of the past.

This is a huge advance in cancer treatment and looks like it is not so far fetched. When I first saw this article I was very surprised but glad to see it.

It had never occurred to me that cancer could be treated with out chemotherapy. In my mind I was leaning towards chemo regimens that were not as harsh on the patient than in the past.

So optimism reigns in cancer land these days.

By the way yesterday's procedure went pretty well, some pain as a result but that should go away in a day or two. I'm taking it easy today and back to work tomorrow.

Here's a big oops!

A bunch of cancer patients in Canada received less than the specified dose of chemotherapy. Nearly 1200 patients in a group of medical centers and then 186 at another. Oopsy! They do not really say how it happened but its clearly a problem. Chemotherapy doses, I believe, are based on body weight. I think the dose you receive always starts on the higher side to see if its tolerated and then the oncologist can tweak it down.But if the oncologist does all their math and then the dose is too weak, that's a problem.

What is scary is this wasn't discovered until a pharmacy technician noticed it.

The hospitals say they have steps in place for handling chemotherapy drugs but they will work carefully to find out the source of the problem. I certainly hope they do.

While you are in chemo you assume you are getting th eright treatment. But what if the doctor is doing their best and some how your drugs were mislabeled. And what if you were overdosed the 3-20% that was the amount underdosed in this case? You might get pretty damn sick from it. At the very least your blood counts would tank.

Anyway, a big oops here. I hope someone learns a lesson and everyone is okay who got the wrong dose.

Chemo again or just semantics?

I have been emailing back and forth with a friend with whom I had lost touch. His wife had died a few years ago of pancreatic cancer.  I told him that I had RA which is why I haven't been around as much recently. He replied that he has a friend who is on methotrexate - which is a form of chemo  for their RA.

Eeek! I had not considered that Methotrexate was a form of chemo. I take it in pill form weekly so its not like I go for an infusion or anything. I looked it up on Scott Hamilton's Chemocare.com and found out its true.

The thought of being on chemo again had always freaked me out. I mean who wants a port, baldness, and nausea again? But they snuck it in on me. They said it was for RA treatment, they never mentioned chemo. So I guess its easier to cope.

My mother was on methotrexate, at a lower dose than me, for years, and we never considered it to be chemo.

Which brings up a point. If a drug is used to treat cancer, they call it chemotherapy. But if the same drug is used to treat something else, can't we just call it a medication for rheumatoid so I don't have to think I am on chemo again? Doesn't it come down to semantics here?

Further proof of chemo brain

A study (because we needed another study to keep all those researchers busy) shows that an EEG can detect chemo brain in women undergoing chemotherapy for breast cancer. So will people now really start to believe chemo brain, or cognitive deprivation, exists? For some reason, this reminds me of when doctors told women their cramps were imaginary.

If I think about the research and clinical trials put into development of chemotherapy and other drugs, when was chemobrain determined to be a 'non-issue'? It is a true side effect of chemotherapy for patients. If its temporary its one thing but for some women it really never goes away. So why was its impact determined not to be of importance?

So pretend if it it was not impact on your brain but on your heart or lungs which could be measured medically through tests quite easily and left the patient with a permanent impairment which interfered with their daily living and ability to hold a job. Would it be considered then to be a caution or warning when prescribing?

Chemotherapy drug doses are estimated based on patient weight and a few other factors so there is not really an exact dose to give everyone. It appears to me (and I am not a doctor) that the patient's first dose is a guess based on their weight and a few other factors, and then based on their reactions to it, they alter the dose for future rounds. Would lower doses still be effective but with fewer side effects such as chemo brain? I think we already know the answer - more research is needed.

The FDA isn't always the bad guy.

We like to think of all the alphabet government agencies as the bad guys. They are the big brother that is overlooking everything we do, think, eat, wear, breathe, etc. But maybe this time the FDA is not the bad guy.

There is a massive problem with shortages of oncology and anesthesiology drugs in the US. Most of them are related to manufacturing problems when they are shut down for failed FDA inspections. Others have tried to claim that the FDA doesn't concern themselves with potential shortages when they cite manufacturers but that is not the case. The FDA tries to work with the manufacturers to prevent shortages and tries to get substitute drugs that are manufactured to US specifications overseas.

So where does the problem lie? In an aging manufacturing infrastructure. Hmmm.... so the same people that charge upwards of $10K per dose cant keep their manufacturing facilities up to par? I fail to sympathize here. They are supposed to be saving lives not killing people with defective drugs.

Angiogenesis

I only learned about angiogenesis last year. Not having recently gone to medical school, I turned to my friend, Mr. Google (as opposed to Dr. Google) for a definition. Wikipedia says:

"Angiogenesis is the physiological process involving the growth of new blood vessels from pre-existing vessels."

 It goes on to add:

"Angiogenesis may be a target for combating diseases characterized by either poor vascularisation or abnormal vasculature."

Now we have gotten through a LOT of big words this morning.I have found an article explaining how contrast MRI may predict how women would respond to chemotherapy and possibly allow them to avoid mastectomies. Another (as if we needed it) research study was done and found:

"... contrast-enhanced MRIs can work as an early predictor of the body’s response to neoadjuvant chemotherapy by measuring the blood vessel formation in tumors, a process known as angiogenesis.  Angiogenesis is considered an earlier and more accurate marker of tumor response."

"... MRIs can detect tumor changes as early as the first cycle of chemotherapy.  If the tumor appears smaller and less bright on the scan, it can be interpreted as a sign that the chemotherapy may be effective and eventually lead to tumor eradication."
However this is all new and exciting but the results will be published later this year and then we need to see if this is coming soon to a hospital near you (and me). So one big word I learned last year combined with a technology I have already experienced has created progress. We may have to wait but in this case progress is progress.

News flash - cancer treatment can cause long term side effects

Who knew? The poisons of chemotherapy, radiation, and surgery could have long term effects on a cancer person's body and health.

A growing population of cancer survivors faces an increased risk of radiation-related second malignancy and cardiovascular disease (CVD) for which little evidence-based clinical guidance has emerged, researchers found.

Gee whiz. I never would have thought what can cure me might kill me too. Any medical treatment you receive where either the nurses have to wear special gowns to handle the drugs before they are injected in your body or the technician has to leave the room you are stuck in during the zapping. No dangers there.

I had RAI treatment in 1981 where I was given radioactive iodine to dissolve the rest of my thyroid tissue. Now the standard is that you go into isolation for a few days so you don't contaminate others. Not me, I was out in the real world as radiation isotopes decayed inside me emitting my own little radiation waves.

I know people who have had chemo and then were diagnosed with leukemia or lymphoma. I know one person who was treated with radiation to the chest for Hodgkins and decades later died of breast cancer which she was told was a known long term side effect of her previous diagnosis.

Well we can worry about it all we want, along with the R-word, as we go from doctor to doctor hoping nothing new shows up.