Personalized cancer care is looking more like a crap shoot

All sorts of research is being done on personalized cancer care. But it looks like a crap shoot to me.

There have been some recent developments:

"This summer, a Mass. General team showed that it was possible to isolate rare tumor cells circulating in the blood and analyze them to understand how a patient’s cancer was changing. Other researchers have been working on developing mouse avatars, in which a patient’s tumor is grown in a lab animal in which new therapies can be tested."

This is pretty cool. But there are still problems. For example, researchers have been taking cancer tissue from patients who's cancer has returned and then bombard it with different therapies to see which ones work. The premise is then that the treatment will work in the patient.

"Researchers must show that the drug predictions that seem so promising in a dish actually work in patients. They also will need to deal with technological issues, such as the time it takes to grow patients’ tumor cells in a dish — between two and six months in the study, and not every attempt was successful."

Not only does the time to grow the tumor cells prolong the wait for treatment - which cancer patients with a recurrence do not have. But then there is no promise that the treatment will work.

So its a crap shoot. The patient has a choice - try the best treatment available now or wait two to six months to see if something better might be chosen from a petri dish? Does anyone have a different suggestion?

Or maybe 'more research is needed' as they always say.

Lessons from famous cancer people

Just because someone is rich and famous and survives cancer, it doesn't mean they can invent a new way to cure cancer. There are a few I would like to mention here. I have nothing against these women at all but am concerned about the weight their name carries and how many followers they have simply because of their fame.

Suzanne Somers - she has a book out on chemo free treatment of cancer based on interviews with doctors. I'm sorry but there is no way to globally dismiss or prescribe any type of cancer treatment without a one-on-one conversation.

Farrah Fawcett declined conventional, FDA approved cancer treatment which would have required major surgery and resulted in needing a colostomy bag for life and went to Germany for a different treatment. Which unfortunately was painful and did not work in the long run. This reminds me of the families who went to Mexico for Laetril treatments in the 1970s. If its not approved here, there may be a good reason for it. And running overseas may not be a good idea.

In a recent article in AARP, long time friends, Melissa Ethridge and Sheryl Crowe talk about their cancer treatment successes. While I found the article interesting, I was not too thrilled with the last image:

Melissa 'turned off' her BRCA gene by eating better. And Sheryl meditates so that her cells function at a higher level.  I'm sorry but you can't turn a gene off. Its part of you. And maybe meditation helps you but it doesn't mean it can cure cancer. Being healthy can help you reduce your risk of cancer but don't think daily meditation will keep you healthy.

I can go on. These four women are ones who first came to mind. If you are rich and famous you have access to the best care and the best types of supplemental treatments from personalized workouts, professional chefs, and expensive organic food and personal doctors. But that doesn't mean your treatment is going to work for anyone else. And please be clear on that to your fans and followers.

Affordable Care Act and Cancer

Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.

Not a good answer.

And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.

Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.

This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.

"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."

However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.

However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.

An Amazing Video

The purpose of this video is Hannah wants to explain what its like to have cancer to her friends. She has been very brave and will make you cry.




She also wants to be famous so help share her story.

And she has a really cute outfit.

Heebee jeebees!!!!

Do you ever wonder about new cancer treatments and their potential side effects? As medical research capabilities advance, so do the weird things they do to our bodies. Surgery used to be where they cut you open and take out the bad things. Now they leave little markers behind or radiate you (intraoperative radiation) while you are sleeping.

I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.

Nano particles sometimes are used as carriers of medicine but I hope  they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????

I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.

What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.  

Thoughts on obesity and cancer

Studies show (because we need another study) says that being obese influences caner patients outcomes. Basically, the fatter you are the more likely you are to die from your cancer. The rates were 16.9% vs. 21.5% in a recent study on breast cancer patients.

Well here is my problem: cancer treatments often cause weight gain (unless you are too nauseous to care about food - but then you can still gain weight). First there is the stress eating and depression eating caused by the trauma of a cancer diagnosis and its looming treatment. Then they pump you full of steroids at each infusion to reduce reactions to your chemo drugs which cause you to feel starving and give you that round moon face. Then the hormonal treatments for breast cancer more weight gain.

My fibromyalgia medication, Lyrica, is known to cause weight gain.

Do you see a pattern here?8

If obesity is going to be considered as much of an issue as to tobacco as a health risk, shouldn't more focus be placed on the side effects  of the treatments themselves? Shouldn't care be taken to prevent causing additional health risks while treating another ailment?

Is the benefit I get for taking Femara, hormonal breast cancer treatment, negated by the weight gain it causes?

Sometimes I wonder why I still take it. If I could lose some weight by going off it, would I be better off without it?

But then we realize that it is easy in most situations to put weight on but much harder to take it off. And with each new medication you gain another 10 pounds that just won't go away...

More research please.

Using immune cells to reduce tumors

This sound interesting. Not stem cells, but the patient's own immune cells, were used to help to help fight cancer.

What they did is:

"Researchers at the National Cancer Institute sequenced the genome of her cancer and identified cells from her immune system that attacked a specific mutation in the malignant cells. Then they grew those immune cells in the laboratory and infused billions of them back into her bloodstream.

The tumors began “melting away,” said Dr. Steven A. Rosenberg, senior author of the article and chief of the surgery branch at the cancer institute."

Now the patient is not cured but her tumors are much smaller. She had an advanced and particularly deadly type of cancer in 2012 when she was approached to try this experiemental technique. Now just because it worked on one person, it does not mean its ready for prime time. But it does represent a new approach to cancer treatment. 

Would I Explode?

I try to be a good patient, but sometimes I wonder if I ditched all my pills, would I explode or something?

The legacy of any cancer patient and anyone with chronic ailments is the pile of pills one must ingest daily. I am so sick of being tied to my pill box that I just wonder, what if I ditched them for a day, or two...? Would I ever go back?

I only take a few million, or so it seems:

• One thyroid pill - due to thyroid cancer
• One Femara (AI) to reduce breast cancer recurrence risk
• Two Lyrica for fibromyalgia
• One weekly injection for rheumatoid arthritis
• Two folic acid to reduce side effects from the injection
• Two leucovorin weekly to reduce side effects from the injection
• One daily anti-inflammatory due to bad back
• One weekly pain patch for bad back issues
• 1.5 anti depressants due to the stress and anxiety caused by all these ailments

Plus, a daily multi vitamin, two fiber pills, two calcium pills, one Vitamin E, two Calcium with D, and the Glucosamine that I have to get more of because I ran out. And my twice daily eye drops for dry eyes (which are probably a side effect of some medication).

Is that enough? I think its way too much.

So I have been wondering, what if I went off my meds? Would I become a news headline? You know the kind that ends with ''....  a family member said they had stopped taking their medication before robbing the bank?"

So my chemobrain/fibro fog allowed me to forget to put on a new pain patch this week which I usually change on Mondays. We'll just say that my pain levels imploded this morning so I had to take another pill to see if I can get it under control as I wait for my pain patch.

I guess I may not explode or implode but I would probably be very uncomfortable... Damn.

Heebee jeebees!!!!

Do you ever wonder about new cancer treatments and their potential side effects? As medical research capabilities advance, so do the weird things they do to our bodies. Surgery used to be where they cut you open and take out the bad things. Now they leave little markers behind or radiate you (intraoperative radiation) while you are sleeping.

I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.

Nano particles sometimes are used as carriers of medicine but I hope  they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????

I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.

What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.  

Ethical dilemma on a cancer drug

I have been mulling this over for a few days. A woman in Texas, Andrea, with stage IV ovarian cancer wants BioMarin to allow her to receive a new drug BMN 673 which has not yet been approved for treatment. Her doctor thinks it  might help her. She hopes it will help her. She understands that it may not help her but it has helped others. There is a big debate going on.

I completely sympathize with her that she wants to try everything possible to stay alive. She and her doctor have been lobbying BioMarin to get the drug. The company is not agreeing , saying it is still in clinical trials and has not yet been proven. They could add her in the clinical trial - but she probably does not meet their criteria. It could help her but it also could mess up their data.

This is a real ethical dilemma and I hope for the best.

What I dislike about this and makes it smack of I'm not sure what. She hired a PR firm who is working for free to publicize her case. Its in the news - national and local here in Boston. She has a change.org petition going. Its all over Facebook.

I just want to say what are you thinking? That you can generate some media hype to change their mind? I was all for this woman but when I found out she has a PR firm creating the hype for her I'm not so sure.

Progress with a certain degree of ickiness

Would you walk around with wires sticking out of the top of your head which is covered in bandages? I am not as concerned about how I look but the idea of wires sticking out of my head. And you have to change the transducers every three or four days. Hence the ick factor.

Glioblastomas are nasty brain tumors, the type that killed Senator Ted Kennedy. They are not easily treatable. These new devices use electromagnetic fields to control the tumor cells.

"The sophisticated system involves covering a shaved scalp with insulated electrical transducers, which transform electricity into electromagnetic energy. The transducer devices are affixed to the skin with wide overlapping bandages, giving the appearance of a high-tech shower cap. 

Electromagnetic fields — generated from electricity produced via a 6-pound battery pack that patients carry on their backs — pass through the skull and brain tissue, and target rapidly reproducing tumor cells, disrupting their delicate process of cell division.

The electromagnetic fields don’t damage the brain’s healthy neurons and anatomical structures because those structures are not undergoing cell division. The fields exert force on proteins — which become electrically charged when the tumor cell is in the process of dividing — and that halts the cell division and destroys the cancer cells."

So you have to carry around a six pound battery pack. That alone would slow me down with my bad back. The other problem is it costs, brace yourself, $21,000 each month. And currently Medicare and many insurers won't pay for it.

However the manufacturer expects, but is not guaranteed, FDA approval in the next year or so. But there is no guarantee of any insurance coverage in the future. To me there is the ick factor and the idea of big brother watching what you are thinking through your brain cells...

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.

They did it again

I hate it when this happens. A medical standard protocol is decided to be not good and may cause long term harm. I find it frustrating. I go to the doctor and get the best care I can. I do my part to cooperate and take my pills or whatever is decided is best.

Then they change their minds.

For many years, TSH (Thyroid Stimulating Hormone) was suppressed as much as possible - to barely traceable levels - maybe 0.3 or 0.4 whatever thingys they measure by. The theory was to keep it as low as possible to prevent possible recurrence of thyroid cancer.

Now they say keeping it that low doesn't provide additional benefit in preventing recurrence but can also contribute to osteoporosis in patients.

"Wang concluded that there's no recurrence benefit with TSH suppression, but an increased risk of harm, particularly for osteoporosis in women, and care should be taken with regard to TSH suppression in these patients who've had thyroidectomy for low-risk disease.

Ronald Koenig, MD, PhD, of the University of Michigan in Ann Arbor, who was not involved in the study, said the findings "raise the question of whether TSH suppression is in fact necessary."

"More data are needed from a larger series of patients to inform practice guidelines, but these findings are potentially impactful since they highlight an area where revision might be indicated," Koenig told MedPage Today.

While I do have a strong family history of osteoporosis, I was diagnosed with osteopenia, the  precursor to osteoporosis in my late 40's which is very early). Right now it is stable but the usual only trend is downward.

Could this be linked to my suppressed TSH levels for the past 32 years? There is no way to tell at this point. But thanks for making the change an making me doubt my medical treatment.

Affordable Care Act and Cancer

Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.

Not a good answer.

And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.

Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.

This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.

"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."

However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.

However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.

The emotional breakthrough

In a few weeks I am going to get together with some friends. When we were all diagnosed with breast cancer, we belonged to the same 'introductory' support group. Six years later we are still in touch and get together. I have been bad recently and haven't made it to some of the recent get togethers - between being sick and on vacation, I missed more than a few.

One member of the group passed away a few years ago. When she was in our group, she was on her second diagnosis and later had a recurrence. We supported her through more chemo. We still miss her.

Another member was diagnosed with stomach cancer a year and a half ago with metastases (from one of the cancers - I'm not sure which or even if she knows - to her bones). She has been through chemo twice now and she just had another PET scan showing her bone mets have progressed. She recently started chemo again.

She is struggling emotionally with this because I think she finally she is realizing that this is the way her life will be. Chemo followed by scan, more chemo or other treatment, throw in a few clinical trials, and more tests and bad news.

I have other friends who are in stage IV. Some of them cope better than others. Some family members cope better than others as well. I think, now I have never had stage IV cancer so I am supposing here, that there is an emotional breakthrough when they finally realize that their treatment will never end in a positive fashion.

Some people take it better than others. I know people who at the stage IV diagnosis, start saying they are terminal. The friend I am seeing tomorrow, and many others, were seeing the world with rose colored glasses, and assuming that life will continue to go on.

Eventually they come to the realization comes and they have the emotional breakthrough where they realize that they are living the life of the metastatic patient with chemo, trials, scans, and more and it won't end positively.

Progress with a certain degree of ickiness

Would you walk around with wires sticking out of the top of your head which is covered in bandages? I am not as concerned about how I look but the idea of wires sticking out of my head. And you have to change the transducers every three or four days. Hence the ick factor.

Glioblastomas are nasty brain tumors, the type that killed Senator Ted Kennedy. They are not easily treatable. These new devices use electromagnetic fields to control the tumor cells.

"The sophisticated system involves covering a shaved scalp with insulated electrical transducers, which transform electricity into electromagnetic energy. The transducer devices are affixed to the skin with wide overlapping bandages, giving the appearance of a high-tech shower cap. 

Electromagnetic fields — generated from electricity produced via a 6-pound battery pack that patients carry on their backs — pass through the skull and brain tissue, and target rapidly reproducing tumor cells, disrupting their delicate process of cell division.

The electromagnetic fields don’t damage the brain’s healthy neurons and anatomical structures because those structures are not undergoing cell division. The fields exert force on proteins — which become electrically charged when the tumor cell is in the process of dividing — and that halts the cell division and destroys the cancer cells."

So you have to carry around a six pound battery pack. That alone would slow me down with my bad back. The other problem is it costs, brace yourself, $21,000 each month. And currently Medicare and many insurers won't pay for it.

However the manufacturer expects, but is not guaranteed, FDA approval in the next year or so. But there is no guarantee of any insurance coverage in the future. To me there is the ick factor and the idea of big brother watching what you are thinking through your brain cells...

Thoughts on obesity and cancer

Studies show (because we need another study) says that being obese influences caner patients outcomes. Basically, the fatter you are the more likely you are to die from your cancer. The rates were 16.9% vs. 21.5% in a recent study on breast cancer patients.

Well here is my problem: cancer treatments often cause weight gain (unless you are too nauseous to care about food - but then you can still gain weight). First there is the stress eating and depression eating caused by the trauma of a cancer diagnosis and its looming treatment. Then they pump you full of steroids at each infusion to reduce reactions to your chemo drugs which cause you to feel starving and give you that round moon face. Then the hormonal treatments for breast cancer more weight gain.

My fibromyalgia medication, Lyrica, is known to cause weight gain.

Do you see a pattern here?8

If obesity is going to be considered as much of an issue as to tobacco as a health risk, shouldn't more focus be placed on the side effects  of the treatments themselves? Shouldn't care be taken to prevent causing additional health risks while treating another ailment?

Is the benefit I get for taking Femara, hormonal breast cancer treatment, negated by the weight gain it causes?

Sometimes I wonder why I still take it. If I could lose some weight by going off it, would I be better off without it?

But then we realize that it is easy in most situations to put weight on but much harder to take it off. And with each new medication you gain another 10 pounds that just won't go away...

More research please.

How to survive cancer

So with a cancer diagnosis, not only are you instantly plunged into cancerland on the roller coaster from hell, your life is changed.

I found two recent blog posts on Ten Things to Expect When You Have Cancer and Ten Tips from a 26 Year Breast Cancer Survivor to be helpful. Even though I resent that some people think we need every internet article to be a list of tips instead of essay format.

But then I wonder wouldn't it be nice if we didn't need these articles if cancer treatment experienced the breakthroughs I blogged about yesterday. That would be very nice.

Right now cancer treatment is horrible. Surgery, poisoning with chemotherapy and burned with radiation. What if cancer treatment didn't need to be so horrible and treatment was no worse than that for other treatable diseases? What if treatment was not as disfiguring and as hard to endure?

What if surviving cancer was an expectation and not the exception?

Passports should be required for Cancerland

Cancerland should require passports, visas, and planning. Its a strange world of different cultures, languages, and mystery. The never ending wait until the next scan, procedure, adventure. We'll wait and see what the next tests show and then decide on the next steps. I have tried to describe it before but never come close. This is the absolute best description of life in cancerland in the hospital I have seen:

"At diagnosis, incomprehensible words resound — HER2-positive, stromal, non-small cell, BRAF, astrocytoma, myeloma, lymphoma, sarcoma— followed by equally baffling prescriptions of drugs that have two names. Hours are badly spent waiting in interior reception areas, near stunned people in wheelchairs and dazed fish aimlessly swimming in a tank beneath a television (perpetually tuned on to a dismal news channel).

After a bed is assigned for some necessary procedure, most slip on skimpy robes — the snap type impossible to snap, the tie type impossible to tie. Why are they constructed so as to gape and expose the naked front or back without providing warmth against the polar climate? "

Read the whole thing here and then you might have a clue if you have never been there.

This is what life in cancerland while at the hospital. The problem is you never really get to leave it once treatment ends.

Would you test your own mice?

This is the latest in cancer testing. Pick your cancer treatment by getting your own mice to test with your own tumor tissue to see what might be the best treatment option for you.

Yes seriously. If you have a spare $30,000 you too can test on your own mice. It seems crazy. But people are trying it and swearing by it. Basically a piece of their tumor tissue is sent to a lab where they inject it into mice and try some different treatments to see which responds best.

In addition to the expense, there are no guarantee its going to work. The tumor tissue is grafted under the skin of the mice so its not the same environment of a human breast or lung. It takes several months to wait for the mice and patients might need to begin treatment before then. Finally immunotherapies can't be tested as the mice have impaired immune systems.

However there is hope:

""Even if it turns out these have real value," they're likely to be eclipsed by newer advances, such as ways to grow tumor cells in a lab dish that take only a few weeks..."

And I feel bad for the mice....