Monday, April 27, 2015

CLINICAL TRIALS for cancer patients- Are you missing opportunities?

How many adult cancer patients do you think participate in clinical trials?  Dozens?  Hundreds?  (Have I been reading too many novels about women and cancer?)

Breast Cancer Action has e-mailed me about a seminar they are producing on participation in clinical trials that touches on an FDA action plan to address under-served people in clinical trials.
As far as I know, anyone can enroll in the webinar.  It is mentioned on their website.

I'm taking the liberty of copying a sign-up link from the email they sent me:

Register for Wednesday May 6th at 2pm PDT/5pm EDT
Register for Tuesday May 12th at 2pm PDT/5pm EDT

I tried the link and it works for me.

If you don't do webinars (I don't) I suggest you go back to the closing paragraphs of Modern Healthcare article of last fall that I referenced on December 12, 2014 mentioning that  National Cancer Institute also has plans for increasing numbers of people in clinical trials:

OSU puts researchers face-to-face with cancer patients,  November 21, 2014 ModernHealthcare

Also in the article are figures on clinical trials from Dr. David Schuller of OSU that surprised me:

 " 'Only about 5% of adult cancer patients participate in clinical trials... 

The National Cancer Institute has set a goal to push that number to 20% patient participation at cancer centers receiving its financial support,' "Schuller said. 

The clinical trial participation rate at the existing James hospital is 27%, he said.

In any case, do you ever dig around in your area or your state or your Alma Mater about what clinical trials may be available and what results you may want to watch for?

Wednesday, April 22, 2015

TAMOXIFEN - Help for foot pain


Everything hurts.  Again.  But sore feet are in the lead.  Luckily, some other victim's blogs told me Tamox could make feet swell and burn.  I figured the ache was just one more Tamox ache.

I started the day massaging my poor feet with more than my usual drop of the podiatrist's very expensive foot pain cream. (For crying out loud, I don't spend that much on skin potions and cosmetics.)

A couple of times, when I've wondered if that was too strong, I've massaged my feet with Traumeel - ask your doctor (if you can find it in US.)  Also, another podiatrist a year or so ago prescribed a custom cream to massage feet.  It had two ingredients, and cost about 1/3 as much as I just spent.   Again, ask your doctor.

Yesterday I spent more than an hour with the orthotics specialist, (You probably know that orthotics are various comfort items that go inside the shoe.)

For custom ones, the specialist makes a cast of your foot and designs metatarsal support and whatever you need into a special pad.)  The specialist I see kindly tries everything possible to avoid the custom ones, which Medicare does not pay for if you're not diabetic.

He also gave me a name, AETREX.  They have memory foam in shoes.

It was my second appointment.  I had given up for awhile because
a) my feet are an unusual shape (okay, sometimes called Duck Feet) and
b) Tamoxifen as I mentioned also makes my feet swell at unpredictable times of day.
I had been thinking only of custom orthotics, and wondered how he would know what size to make them? For my morning size feet or afternoon size?  Aargh.

Yesterday, he stretched two pairs of shoes in the toe area for more toe room.  The white "active" shoes, however, are too wide for the rest of my foot.  He sent me home with some ready made orthotics and mentioned that they would break in.

I went for a few-block walk with them in the shoes last night, and the orthotics seemed to push the shoes even wider!  I need shoes that fit my feet!  (If  you're as old as I am, do you remember when there were narrow-heel shops and combination-last shoe sizes?)

Anyway, today, despite the pain, I climbed the library stairs wearing them, and did my marketing. They don't feel better.  They don't feel good at all.

 Back to the drawing board.

The other pair he also stretched in the toe area,  I haven't walked anywhere in them yet.  They are a little dowdy for my taste, but with more padding at my ankle bone .. maybe okay.  I wouldn't be thrilled to wear them to a wedding,

I hate to take Tylenol in the daytime, but this might be the day.

In any case, if your feet are a more regular shape, some extra-thick padding for inside the shoes (CVS has some - it has a white layer and a buff layer,)  This foot pain stuff takes more trial-and-error than the invention of the automobile.

I wish you health.  And some comfort.

Thursday, April 16, 2015

Tamoxifen at 70+

6:30 AM  Everything hurts. I woke at 6-- The rotten cell phone woke me to tell me that I've used 45% of my time. 

Rain is expected.  The physical therapists warned me that our pain can be worse when there is low pressure.  We must have REALLY low pressure this morning.   So don't blame Tamoxifen???

The drugstore Tamox leaflet says I should have liver function tests.  Liver function?  So if Tamoxifen is hard on my liver, I don't dare take Tylenol for the pain, do I? 

It's hard to feel old when you're 25 or 35.  When you're 75 and counting, feeling  95 instead of 75, it makes you suspect you're OLD.  

I see those photos on line of people climbing three flights of outside stairs in San Francisco or Paris, and wonder if I would be healthier if I had lived there.  The fact that I climb a flight at the library several times a week (Tamoxifen sore feet or not) is temporarily forgotten.

My life had already been overwhelming enough (moving from CA to TX, and getting DCIS, for instance) when I started Tamoxifen, so it's taking me a while to learn what mystery complaints originated with Tamoxifen, and which ones started earlier.  And alas, which ones may be from laziness or the O (for old) word.

Just recently I went through past calendars (plus some women's blogs) and found that the burning feet probably are  from Tamoxfen.  And so, probably, are the chills, the many aches, the fatigue, and the feeling I hate to call depression.

Big question:   what if some problems have more than one cause ?  

What if burning and swollen feet are also from vitamin deficiency and that vascular problem the podiatrist says I have?
What if I really do have a vitamin deficiency plus Tamoxifen side effects? 
And what if that vascular problem the podiatrist found is part of a whole set of problems: Tamox pains plus leftover nerve pain from before the lumbar fusion, plus a vitamin deficiency, plus too much sitting and blogging about Tamox

My experience:  Doctors don't know enough about Tamoxifen 

and when it is a direct or indirect cause of pains, fatigue and emotion.

I have to:   Tell primary doctor about problems I'm almost sure are Tamox, 
Complain to orthotics guy about extremeb scarcity of fitting shoes for him to fix.
Keep walking as much as today to stay alive.
Deal with housing and insurance co. to maybe help depression and fatigue.
Try to have some pleasure

Does any of this ring a bell with you?

I wish you health.

Wednesday, April 1, 2015

Breast Cancer Preventive Surgery? A link and a true story

One of the favorite times of my life was living at the beach.  On a day trip with girlfriends, I had met some people who lived near a naval base farther south in California. When the dust cleared, I was working for one of them, and alone far from home.  The woman in the group, let's call her "Jay," became my closest friend.

And as it can in favorite times, fear and tragedy crept in.  Jay called me one day to say she had a lump in her breast.  She had a family history of breast cancer, and didn't want to wait even a few weeks to monitor the lump.  Fear and the need to know sent her straight to the doctor.

Breast cancer.

She had some surgery, was in and out of the hospital.  Then the news no one wants to hear.  Ever.

They didn't get it all.  There was a disk on her chest wall, which of course did not show in the mammogram.  That was years ago, and in the interim I never heard of a similar case.

What has this to do with you?  A week ago, I was led to a article on breast cancer surgery to reduce the risk of recurrence.  The article led me through the terms that all just mean cutting off another breast after one has been diagnosed. And it gave some many specifics about who has a high enough risk to need this irreversible step.

Extreme caution before deciding to cut off the healthy breast was a prominent theme. (Yes, I use the words "cut off.") And I read some of the case for the many alternative treatments and why removing the healthy breast is no guarantee.  

Suddenly, there was Jay's story in front of me.  And I got a quick, unforgettable reminder and lesson in anatomy: 

Breast tissue is not all in one place.

"The chest wall, which is not typically removed during a mastectomy, may contain some breast tissue, and breast tissue can sometimes be found in the armpit, above the collarbone, and as far down as the abdomen—and it is impossible for a surgeon to remove all of this tissue. " *

This reminded me of Hot Topics - Breast Cancer 1, 2014. In May, 2014, I posted:  "The doctor who impressed me so much, Lisa Carey, MD, told us that some breast cancer cells are looking more like other cancer cells."  If various cancer cells can be mixed, this makes it easier for me to believe that our breast tissue cells can be mixed in with other body cells.

The article, SURGERY TO REDUCE THE RISK OF BREAST CANCER, gives a complete story of specific preventive treatments.  It's easy to read and if you are considering more surgery, it doesn’t take long to read all their news and facts.

I wish you health.