Breast cancer vaccine?

Here's a perky article telling us that the Dept of Defense has developed a vaccine to prevent breast cancer recurrence. It is just ending its stage II trials and will start stage III shortly. If successful through this phase, then they can apply for FDA approval - in five years. That really isn't that far away and they are currently recruiting participants.

With out getting technical, which I am not really capable anyway, the vaccine relates to the Her2 status of breast cancer and works with the body's immune system to reduce recurrence rates. In trials, it reduced expected recurrence rates by 50%.

Most breast cancers, like mine, are Her2 negative. So, if it is using the Her2 protein and I have a negative status, will it work for me? I am confused. I need a translator here.

"The vaccine, Peoples explained, targets a protein commonly over-expressed in breast cancer cells called human epidermal growth factor receptor 2, or HER2/neu.

Cancer vaccines typically target some protein or antigen expressed on cancer cells, he noted. “The idea is to train the immune system to recognize that protein or piece of protein that’s highly expressed on cancer cells, but not on normal cells,” he said. “That way the immune system can differentiate what’s abnormal and normal. If the immune system can recognize it, it marks it for death, basically.”"


"The researchers targeted the HER2/neu protein, which is expressed at varying levels in women with breast cancer, then honed in on the 60 percent of women who express the protein at low to intermediate levels. The vaccine is a mix of the E-75 peptide of the HER2 protein and an immune system stimulant.

If its low to intermediate levels maybe it is for me. I am confused. One note is that if you look at the recruiting criteria - they don't want healthy volunteers - I guess if you have had cancer you are not considered healthy. I do find that slightly ironic. You may call me unhealthy

Also, its all about the bottom line. The DOD developed this vaccine because breast cancer is one of the prevalent diseases seen in military beneficiaries - they want to save money.

Until my doctor can explain this to me, I'll just put it in the "if we can't kill them, lets confuse them" category for now. I see my oncologist in March, I'll try to stretch my tiny chemo brain to remember it until then.

Finding cancer information

There is lots of information out there on cancer. Some of it is very good and some of it is a load of crap. Figuring out how to find the good stuff is important. Here are a few tips:

• Use reputable sites. Look for ones which have some credentials behind them. The American Cancer Society is a great place to start at www.cancer.org. Also try the websites for specialized cancer medical centers such as Dana Farber, Mayo Clinic, MD Anderson, Cancer Treatment Centers of America.
• Medical blogs and newsletters. Many of these same sites have newsletters or blogs focused on cancer in addition to more general ones. Dana Farber has just launched a cancer blog. Mayo Clinic has a Living with Cancer blog and newsletter. Johns Hopkins has a specialized monthly newsletter for breast cancer.
• General medical sites such as WebMD can provide solid information on procedures and tests even if they do not have as much detail on your type of cancer.
• Ask the Experts sections can decipher the technical side of the information you find as well. See this section on the Mayo Clinic's site.
• Cancer type specific information can be found at patient associations or non profits. Google 'cancer name' and the word association to find yours. A list of some of them can be found here.
• Your hospital's website. I am treated at Lahey Clinic and they have a lot of information on ailments and procedures/medical misadventures/tests. I usually look up every little medical adventure on their site before I go to have it. There are standards for each procedure or test but there may be different variations on things like - needing a ride home or how long it will take or preparation - that are specific to where you are treated.
• A very good place to ask where to find information online is your doctor. They know where to get the right information.

Once you get to a site, look for their background before you believe anything you may read there:

• Red flags include broken English, misspellings, lack of organization, broken links.
• Look for date of last updates - on the very bottom line of the home page is usually a copyright date. Websites can stay up long after the creators are gone. 
• Look for an About Us or other descriptive page providing background on the posters. If they have no credentials or aren't medical professionals, their cancer information has no credibility.
• Any site claiming to have a cure, treatment, etc that can heal you if you send them money up front is a hoax. If it is a real treatment your doctor would know about it, you wouldn't need to buy it online.

One of the interesting parts of having a blog is the comments I receive. I frequently get comments from weird medical people telling me about their cures or wanting me to help them by publicizing their book or association or telling me how they can help me. I usually just delete them and/or block them. Yesterday a gentleman in Australia commented that he wants to talk to me to tell me about the beneficial side of cancer cells. Hmmm... I checked his credentials and he used to be a chiropractor and now promotes mind/body wellness which is all well and good but what does he know about cancer anyway? Maybe he has studied acupuncture and other alternative therapies but I won't waste my time.

There is lots of information out there but you need to check it out before you read it. If it seems too good to be true, it probably is.

Sorry, I don't do guilt trips

Cancer deaths are decreasing each year - more than 1 million have been avoided through better screening, treatment, and prevention since 1991. But that is not enough:

'That sounds promising, but it's not as good as it could be, says Otis Brawley, chief medical officer of the American Cancer Society and CNNHealth.com conditions expert.

"Our data on cancer causation and cancer prevention tells us that we could have done a lot better," Brawley said.

Given all of the available information about how to prevent, screen for and treat cancer effectively, it appears that up to 200,000 lives could have been saved in 2008 if all of those known measures had been taken, Brawley said. More specifically, many of those deaths would not have occurred if more people hadn't been smoking over the past 20 years. That's because it takes about 20 to 30 years of smoking to develop lung cancer.'

And of course we need to factor in the inactivity/obesity/high calorie intake which is about to to take over tobacco use as the number one cause of cancer.

"Access to treatment is another major issue in avoiding cancer deaths, Brawley said. A substantial minority of cancer patients do not get the treatment they need, many times because of lack of insurance coverage.

More science needs to be done on other possible causes of cancer from environmental causes, such as air pollutants and chemicals in plastics, Brawley said."

I hate these articles. I didn't do anything wrong. They are not written to provide a guilt trip for those of us lucky enough to get cancer but they do. I belong to about a billion cancer message boards. On one recently, there was a discussion on how everyone thought they got their cancer. There were lots of ideas - over use of cell phone, living near a volcano, living on military bases, etc. My reply is I have given up trying to figure this one out and we cannot beat ourselves up for something we might or might not have done - its in the past and unless we have a way to undo things, its not going to happen.

I really don't do guilt trips related to the cause of my cancer. I don't smoke any more but if you asked a 'so-called' cancer specialist I am sure they would be happy to tell me I am eating the wrong things, not getting enough exercise, breathing contaminated air, using plastic, driving a car, playing in traffic, stressed out, have a pet, never had children, am too fat, or any number of things. I refuse to worry about this any more.

Here's the bottom line. I have had cancer twice. We know there are things that can raise one's risk of cancer but do not guarantee you getting cancer. I may have done them but billions of other people have done them as well and didn't get cancer. So unless you can tell me, what exactly caused my cancer, I will politely tell you now to please shut up. If you don't I may get crabby.

There's no 'I' in team

Many people when faced with an 'icky' (for lack of a better word) medical diagnosis, are sent to a specialist in another practice or medical facility. The problem with that is then there is no team work in the care. The primary care is in one place, specialist in another, surgery is where, chemo where, radiation where? You add it all up and you get patients bouncing from one office to another carrying disks of medical records and getting confusing and/or conflicting information that they need to decipher.

I always thought this was a crazy system which is why all my care is in one hospital. I do know people who are generally treated at that same hospital but at the first sign of cancer, fled to the 'specialized' cancer centers in Boston. They are doing what is comfortable for them at first but then they end up juggling medical advice.

I can't remember what exactly happened at my first diagnosis but I do remember seeing both an endocrinologist and a surgeon and having follow up with both. But that was 30 years ago so I can clearly claim chemo brain.

But at my breast cancer diagnosis, after a positive biopsy with my surgeon, I had a day of doctors - my team of breast surgeon, medical oncologist, radiation oncologist, and social worker - all got to talk to me separately and then they got to talk about me and decide as a team what would be my treatment protocol. And all through my treatment they still talk to each other and read each other's notes.

Now I find out that this team approach results in happier patients. They had to have another study to prove this (but if all these damn medical studies stopped I think there would be lots of unemployed researchers.)

At my breast cancer diagnosis, I was in a fog. My husband was in a fog. We barely knew how to breathe, never mind think and make life changing decisions. This process of a group decision presented to my husband and I was a big comfort. It gave us both the short term - surgery, middle term - chemo, and long term - tamoxifen/AI and radiation. The social worker also gave us some emotional help and one of the best pieces of advice - don't try to figure out the whole process now, take it step by step.

Through that first year, the doctors did talk about me and at appointments, I would hear about a discussion with another of my doctors. Because it was a team effort, I didn't even see a doctor's ego! It was a nice virtual security blanket.

Hospital based treatment

As I have said before hospitals are no place to get any rest. They are also great places to be exposed to germs. Some people think insurance companies kick people out too soon after surgeries but there is something to be said for going home and getting a good night's sleep in your own germ free bed if at all possible.

But there is also the concept of hospital based care vs community based care. We used to have surgery or require extended care and be automatically admitted to the hospital. In the UK, there is now a movement to community based care - basically minimizing hospital stays and treating people in their homes or at local doctor offices. This is seen as a mandatory cost cutting move.

I have experienced this as well as both of my parents. After surgery which left me with a lovely (really yucky) surgical drain, I had a visiting nurse until the drain was removed. The same with my parents, surgery to rehab to home care with a visiting nurse and therapist. Even staying in rehab is not as comfortable as one's own home - shared rooms, shared germs, etc. The only benefit to rehab is getting pain under control and getting more physical therapy - multiple sessions in a day. Visiting nurses and therapists can provide a good level of care in the privacy and comfort of your own home.

There have been times for other surgeries where I have been stuck in a germy, loud hospital room for as much as a week - waiting to get a post surgical infection under control. I am always very happy to go home from the hospital and spend as little time there as possible. In fact often by the time I am ready to leave, I am ready to check myself out before they are ready to discharge me. I think I can be a really bad patient sometimes.

My resolutions

I have been thinking and finally have come up with a few resolutions for 2012. They say that 80% of New Year's resolutions fail. So why should I bother? Because I want to. You will also note that I am not biting off more than I can handle either. So here they are:

1. I resolve not to have cancer in 2012. See that's easy. I can say that. I've had it twice so now its someone else's turn. Maybe I am a bit selfish but I do feel its not my turn this year.
2. I resolve not to develop any other new medical ailment in 2012. My life for the last six years has been a series of medical crap.
• 2011 - fall, strained tendons in knee, knee injections, tennis elbow, etc.
• 2010 - I can't remember what was new but I had lots of PT, doctor appointments, lymphedema stuff, and back injections.
• 2009 - sprained ankle, developed back problems, became best friends with the pain clinic, etc
• 2008 - gall bladder surgery
• 2007 - breast cancer, chemotherapy, radiation, three surgeries, became best friends with the cancer clinic
• 2006 - fibroids and hysterectomy
3. I resolve to get serious about this deflabbification project. I have started losing weight since I joined a new gym last February. This year I have signed up for a weight loss challenge that the gym. For 8 weeks, they split up those who sign up into 3 teams. We get weighed weekly and the winning team which loses the biggest percentage of weight lost wins something - I can't remember what it is but its really just to motivate me. I also can sign up for 8 30 minute personal trainer sessions for the eight weeks for a really cheap price. If I am on the deflabbification lifestyle, by default, my husband is as well. So I have double-dared my husband - which ever of us who loses the biggest percent in weight by the end of March has to buy the other a nice something. I also plan on not going on a diet but changing our eating habits.
4. I resolve to be a perky cheerful person all of the time. Those of you who know me may question this one but when life gives you lemons,you need to make lemonade, vodka is optional. But when I am on the medical roller coaster with some back pain as well, I tend not to be as perky as I may seem. But I am working on this. Besides, when I am perky, it often annoys my husband which is an added benefit.

So those are my resolutions. I think they are doable. I am not promising to lose 20 pounds (which would be nice) but to take control over the flabbification. More medical ailments are just out of the question out at this point. I have put aside world peace, tolerance, and political niceness for now. This year I will focus on me. I am catering to my inner two year old - mine, mine, mine!

Preventing medical errors

A big part of being a patient is working with your medical team to help prevent errors. As a patient, your part is to speak up and ask questions, tell about how you feel, and participate in your care. The Joint Commission (which is a big health care quiality organizaiton which I had never heard of) has developed a program called SpeakUp with a flyer that anyone who is  amedical patient should read. You can get a copy of it here or read the content below. I couldn't have said it better myself:

Speak up if you have questions or concerns. If you still do not understand, ask again. It is your body and you have a right to know.

• Your health is very important. Do not worry about beingand you have a right to know.
• Your health is very important. Do not worry about being embarrassed if you do not understand something that your doctor, nurse or other health care professional tells you. If you do not understand because you speak another language,ask for someone who speaks your language.You have the right to get free help from someone who speaks your language.
• Do not be afraid to ask about safety. If you are having surgery, ask the doctor to mark the area that is to be operated on.
• Do not be afraid to tell the nurse or the doctor if you think you are about to get the wrong medicine.
• Do not be afraid to tell a health care professional if you think he or she has confused you with another patient.

Pay attention to the care you get. Always make sure you are getting the right treatments and medicines by the right health care professionals. Do not assume anything.

• Tell your nurse or doctor if something does not seem right.
• Expect health care workers to introduce themselves. Look for their identification (ID) badges. A new mother should know the person who she hands her baby to. If you do not know who the person is, ask for their ID.
• Notice whether your caregivers have washed their hands. Hand washing is the most important way to prevent infections. Do not be afraid to remind a doctor or nurse to do this.
• Know what time of the day you normally get medicine. If you do not get it, tell your nurse or doctor.
• Make sure your nurse or doctor checks your ID. Make sure he or she checks your wristband and asks your name before he or she gives you your medicine or treatment. Educate yourself about your illness. Learn about the medical tests you get, and your treatment plan.
• Ask your doctor about the special training and experience that qualifies him or her to treat your illness.

The goal of the Speak Up™ program is to help patients and their advocates become more informed and involved in their health care.

• Look for information about your condition. Good places to get that information are from your doctor, your library, support groups, and respected Web sites, like the Centers for Disease Control & Prevention (CDC) Web site.
• Write down important facts your doctor tells you. Ask your doctor if he or she has any written information you can keep.
• Read all medical forms and make sure you understand them before you sign anything. If you do not understand, ask your doctor or nurse to explain them.
• Make sure you know how to work any equipment that is being used in your care. If you use oxygen at home, do not smoke or let anyone smoke near you.

Ask a trusted family member or friend to be your advocate (advisor or supporter).

• Your advocate can ask questions that you may not think about when you are stressed. Your advocate can also help remember answers to questions you have asked or write down information being discussed.
• Ask this person to stay with you, even overnight, when you are hospitalized. You may be able to rest better. Your advocate can help make sure you get the correct medicines and treatments.
• Your advocate should be someone who can communicate well and work cooperatively with medical staff for your best care.
• Make sure this person understands the kind of care you want and respects your decisions.
• Your advocate should know who your health care proxy decision-maker is; a proxy is a person you choose to sign a legal document so he or she can make decisions about your health care when you are unable to make your own decisions. Your advocate may also be your proxy under these circumstances. They should know this ahead of time.
• Go over the consents for treatment with your advocate and health care proxy, if your proxy is available, before you sign them. Make sure you all understand exactly what you are about to agree to.
• Make sure your advocate understands the type of care you will need when you get home. Your advocate should know what to look for if your condition is getting worse. He or she should also know who to call for help. 

Know what medicines you take and why you take them. Medicine errors are the most common health care mistakes.

• Ask about why you should take the medicine. Ask for written information about it, including its brand and generic names. Also ask about the side effects of all medicines.
• If you do not recognize a medicine, double-check that it is for you. Ask about medicines that you are to take by mouth before you swallow them. Read the contents of the bags of intravenous (IV) fluids. If you are not well enough to do this, ask your advocate to do it.
• If you are given an IV, ask the nurse how long it should take for the liquid to run out. Tell the nurse if it does not seem to be dripping right (too fast or too slow).
• Whenever you get a new medicine, tell your doctors and nurses about allergies you have, or negative reactions you have had to other medicines.
• If you are taking a lot of medicines, be sure to ask your doctor or pharmacist if it is safe to take those medicines together. Do the same thing with vitamins, herbs and over-the-counter drugs.
• Make sure you can read the handwriting on prescriptions written by your doctor. If you cannot read it, the pharmacist may not be able to either. Ask somebody at the doctor’s office to print the prescription, if necessary.
• Carry an up-to-date list of the medicines you are taking in your purse or wallet. Write down how much you take and when you take it. Go over the list with your doctor and other caregivers.

Use a hospital, clinic, surgery center, or other type of health care organization that has been carefully checked out.
For example, The Joint Commission visits hospitals to see if they are meeting The Joint Commission’s quality standards.

• Ask about the health care organization’s experience in taking care of people with your type of illness. How often do they perform the procedure you need? What special care do they provide to help patients get well?
• If you have more than one hospital to choose from, ask your doctor which one has the best care for your condition.
• Before you leave the hospital or other facility, ask about follow-up care and make sure that you understand all the instructions.
• Go to Quality Check at www.qualitycheck.org to find out whether your hospital or other health care organization is “accredited.” Accredited means that the hospital or health care organization works by rules that make sure that patient safety and quality standards are followed. 

Participate in all decisions about your treatment. You are the center of the health care team.

• You and your doctor should agree on exactly what will be done during each step of your care.
• Know who will be taking care of you. Know how long the treatment will last. Know how you should feel.
• Understand that more tests or medications may not always be better for you. Ask your doctor how a new test or medication will help.
• Keep copies of your medical records from previous hospital stays and share them with your health care team. This will give them better information about your health history.
• Do not be afraid to ask for a second opinion. If you are unsure about the best treatment for your illness, talk with one or two additional doctors. The more information you have about all the kinds of treatment available to you, the better you will feel about the decisions made.
• Ask your doctor to recommend a support group you can join to help deal with your condition. People in these groups may help you prepare for the days and weeks ahead. They may be able to tell you what to expect and what worked best for them.
• Talk to your doctor and your family about your wishes regarding resuscitation and other life-saving actions.