Showing posts with label Cancer Info. Show all posts
Showing posts with label Cancer Info. Show all posts

3/11/12

Vote Now, Vote Often

METAvivor needs your vote.  Heck, it needs your votes, since you are allowed to vote once every day until March 15th.

METAvivor is an organization that is dedicated to funding research on metastatic breast cancer.  Currently most breast cancer funding goes towards 'awareness education', while less than 3% goes towards metastatic disease, which kills 30% of all people who are diagnosed with breast cancer (that means that 30% of the women currently celebrating their 'survivorship' will go on to develop metastatic breast cancer, which currently is both incurable and terminal). 


METAvivor has applied for the Pink Well video competition.  If it receives the most votes, it will apply 100% of the $50,000 prize towards grants for metastatic breast cancer research.

My cancer has advanced too far to be helped by this research - but your support could help us find a cure in time to save other women that you know and love.  Your mom, your daughter, your niece, your sister, your friend, your neighbor.  The 30% of the 'survivors' who participated in your last local breast cancer fundraiser who will go on to develop metastatic disease.

 A Cure In Time For Her, Perhaps?

Vote today.  Vote tomorrow.  Vote every day through the 15th.  And then, if you can, donate to organizations like METAvivor.  Awareness is good, but a cure would be better...

10/9/11

Awareness Worth Having

My friend Donna is posting some really great information about breast cancer in honor of Breast Cancer Awareness Month.  All the marketing of Pink glitz and glam, all the Pink pies and ribbons and shirts and motorcycles and cars, all the ballyhoo... it can distract us from some of the more important facts that we really need to get across about breast cancer.  It can lead us to underestimate the seriousness about the disease - it can lead us to even believe that breast cancer is curable.

Unfortunately, breast cancer is not curable.  Not even the most 'mild' case is curable.  The best we have achieved, with all our research and our advances in treatment, is remission.  Remission means that the cancer in your body is not currently detectable by our current technology... but it does not mean the cancer is gone.  Breast cancer tends to recur, and more often than not when it recurs, it does so in its deadly form.
And there is nothing pinkly pretty about metastatic breast cancer.

So let's get ourselves truly educated about breast cancer.  Let's be aware about its realities.

Donna's posts are a good place to start.  Here are links to her most recent Awareness Points:

Breast Cancer Subtypes

10 Truths About Breast Cancer

Breast Cancer Remission

Estrogen As a Risk Factor


* My thanks to Donna, whose blog is a constant source of inspiration and information, and whose person is a blessing, indeed!

9/18/11

Something To Read

Friend Donna has posted about a particular bit of research that may be promising for treating us metastatic breast cancer folk.  As with many other potential treatments for truly deadly and horrendous diseases, this one involves stem cell research.  Please read about it - there may not be anything solid we can do to further the cause at the moment, but it's good to be aware and ready to move (in the right direction) when the time comes.

8/5/11

Conspiracy Theory

A friend recently posted that the conspiracy theories swirling around the pharmaceutical industry and its relationship to the FDA and etc don't make sense because they and their families get cancer too, so of course they'd want to find cures...

But that argument doesn't hold up under scrutiny.  I'll get back to the specifics of that particular argument in a bit, but first let's discuss the reasons that Big Pharma and the FDA might have for obstructing the testing and approval of promising new treatments for cancer.

Pharmaceutical companies have lots of political clout; observe, for instance, political campaign contributions to both sides of the aisle from pharmaceutical, insurance, and tobacco companies over the last 30 years, and think about what value they were/are expecting from the money spent.  They have HUGE incentives to get in the way of research on anything but their own extremely profitable drugs (common chemo treatments cost up to $50,000 per month at one treatment per week, some cost more). 



Notice who benefits from the system set up currently in terms of getting treatments approved - the requirements for publishing, patenting, the bureaucratic hoops to be jumped, the insane amount of money required for even the smallest 'acceptable' human trials (which will not be anywhere near sufficient to get your treatment approved). 

Check out who is on the board of the FDA, who pays them money for their services, where their investments are held, what their own patents and patents pending are.  Check out the FDA rules about how and when drugs are approved.  Check out the trials going on for the last few years, see how many are on new treatments vs. various combinations of the same old stuff that doesn't really work.  Notice who is funding the trials. 

Think about what these things mean for the big pharmaceutical companies, in terms of keeping the profits going on the drugs they already have patented.  Think of what their stockholders expect.  Look at what is happening to Eli Lilly at the moment because of their patents running out, and think what would happen to other pharmaceutical companies if their extremely profitable chemo and 'mental health' drugs were rendered pointless by better treatment.

Unfortunately, the 'they get cancer too' argument doesn't hold up, unless you also think that somehow the families of tobacco bigwigs (as well as the farmers and pickers and factory workers) were either immune from cancer or that they all TRULY believed that cigarettes don't cause cancer (in spite of the mountain of evidence waved in their collective faces). 

In the end, the officers at pharmaceutical and tobacco companies have to weigh their options - do they give up their livelihoods right now, or do they take a little gamble on a potential risk down the road? 

Also remember: like those of the tobacco industry, families of the officers of big pharmaceutical companies can well afford to go to Europe for the latest treatments, and they do so.  

You and I don't have that luxury.

I'm not saying we should spend our hours sitting around in a stew of fury - that wouldn't be healthy for us, and we have troubles enough.  But it's not good to close our eyes and pretend that everything is okay when it's not, either.  The system is flawed, and it's not working for people with the deadliest forms of cancer.  The survival rate (including median survival times) for breast cancer is exactly the same as it was in the 1930's.  Do we find that acceptable, when we actually think about it?

We changed the system for children's cancers, and it has led to some significant advances in survival and treatment.  We should be doing the same for adult cancers.  But that won't happen until we stand up, yell loudly and put our votes where our mouths are.  That happened when our insurance companies tried to decimate our treatment options for catastrophic/chronic illnesses back in the 1980's; we can do it for cancer, if we have the will.

8/2/11

No News Is Bad News...

So the news isn't good.  The Circulating Tumor Cell only found one cell in the sample.  One is about what you'd expect to find in a healthy person, if the test was going to be effective for your particular cancer.  So no CTC test for me after this - and no help in finding a working treatment quickly enough to be truly useful.

I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back).  The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis.  Probably a good thing that I have no uterus or ovaries to be crowded...

Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans.  The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs.  And my insurance is dragging its feet about getting back to us on that issue.  In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.

More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial.  Dr. B didn't feel that I could afford to wait any longer.

So I'm on the chemo today that I SHOULD have been on last week (Gemzar).  I gained tumor size, was heavily irradiated - and didn't gain a thing.  Because I have now been on three chemo treatments, I no longer qualify for the trial.  So that is that.

And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment).  So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.

Smart.  Very smart.  The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt.  So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world.  Don't we?  Don't we??

7/28/11

Update, Again

Not a lot happening at the moment, although there's plenty of busy-ness.  I'm getting tested to see if I qualify for a Phase 2 Drug Trial, which means blood tests and scans and lots of paperwork.

Phase 1 Trials generally test mostly for how toxic the drug is, with effectiveness being secondary.  They are generally very small trials.  Phase 2 Trials check for both toxicity and effectiveness, with a moderate number of study patients - in the case of the trial we are considering, this is about 160 metastatic breast cancer patients.  When drugs/treatments fail, it is usually in the Phase 2 Trials, primarily because the treatment proves to be either ineffective or too toxic for large numbers of patients to tolerate.  Phase 3 and 4 trials are usually longer, larger cohort studies, fine-tuning issues such as most effective dosage and dose frequency, toxicity management, long-term and rare side effects, etc.

With a new drug, early Phase 2 Trials are more or less a crap shoot.  You don't really know all the side effects (the prior trials were probably too small to indicate the less common - and usually more severe - side effects, and of course there is no data on long term effects).  You usually don't really know the effectiveness of the drug on your specific type of cancer.

There are benefits, but they often don't fall upon the patient (unless it turns out to be a spectacular success - Tamoxifen, for instance, was stopped in the middle of the Phase 3 trials because it was so effective that they wanted to make it available to all breast cancer patients with hormone-sensitive tumors).  The study pays for testing and drugs - which could be useful to patients with no health care insurance, but in my case the benefit is to my insurance company, rather than to me.  The pharmaceutical company benefits, because they get to test and hopefully eventually market a very profitable drug (chemo drugs bring in HUGE amounts of money to the industry).  Doctors get to learn about new drugs, and find out whether they are effective before they are even generally available.  But the patients...

Well, a miracle could happen, and the drug could be an amazingly effective treatment.  We haven't found one yet, but you never know.  But the odds aren't in your favor.  The likelihood is that the drug will either be completely ineffective, or it will be minimally effective, or - at best - it will have about a 30% (the 'gold standard' chemos have about a 30% 'success' rate) chance of either shrinking, stabilizing, or slowing down your tumors for a little while.  In most cases, a 'little while' is literally a matter of a few days to a few weeks.  If it's a few weeks, they call out the media and stop the presses and declare it The Next Big Thing.  And again, they are generally looking for 'progression free' weeks, rather than longer lifespan.

And in the meantime, the patient is the one taking all the really big risks.  Because it's the patient who goes in with no idea of what horrible things the drug might do to them, and nobody can tell them.  Which is why so many drugs don't get past Phase 2 - people die or have new cancers or heart attacks or blood clots, and maybe it's for a drug that helps some people, or maybe it's all for nothing.

But if nobody joins a Phase 2 Trial, then they will NEVER find the REAL cure.  Somebody has to do them.  The question is: in this case, should somebody be me?

I'm not sure yet.  I'm thinking about it.  In the meantime, I'm going in tomorrow to drink a lot of contrast dye and get injected with even more, so that I can be extremely thoroughly CT'd and bone scanned.  The CT scan is because they don't care about my bone mets - they aren't 'properly measurable'.  Though why they then want a bone scan, I can't imagine.  What they are insisting on is that I have soft tissue tumors that are big enough to measure through a period of shrinkage (in the best of all possible worlds).  Which may not be the case.  So first we find out if I'm eligible.

Then I decide.  The devil we sort of know (Gemzar), or the devil we don't?

7/23/11

Weekend Jitters

Scan this morning, so as usual I'm flittering between fingernail-chewing (figuratively speaking) and trying desperately to distract myself.  My misery will be relatively short-lived, as I'll be seeing Dr. Bouncy and getting a look at the scan results, if not the report, early on Monday morning.  Then we'll decide what the next treatment plan is.

I've been having some indications that all is not well, so I'm not feeling hopeful.  Starting a new treatment is rife with potential problems and risks, especially when you don't know if it will even do you any good.  

The good news is that it looks like I'm going to be able to get the CTC test done, and done within a week or so of the scan, which means we'll have some idea of a 'baseline' to work with IF the test is able to detect tumor cells in my blood.

What is a CTC test? Well, it's a special blood test that is recently available for certain cancers - breast cancer is one of them - that detects and counts the number of tumor cells circulating in your blood.  It requires specialized tubes for collection, and has to be sent to qualified labs and processed very quickly (within 48 hours). 

IF there are detectable tumor cells in your sample, the number per volume can fairly accurately predict your prognosis - at least, it can tell you whether a particular treatment is working or not, based on the tumor cell count on your last test.

The benefits:

Unlike scans, the CTC test does not irradiate you and make your cancer more likely to grow.

You can take the CTC test a month after starting a new treatment, and get some idea of whether that treatment is working.  Scans are usually limited to every 3-6 months, which can be a very long time to let a cancer grow if a treatment is not working.

CTC tests cost at 1/5th or less the cost of scans.

CTC tests don't take up as much time for the patient as a scan, and don't cause the claustrophobia or discomfort that laying still in that confining tube can bring. 

Unlike scans, CTC tests are as accurate and easy for diabetics as they are for non-diabetics.

CTC tests do not require the annoying dietary restrictions for 28 hours beforehand that scans demand.

Preliminary testing seems to indicate that when circulating tumor cells are detectable, the CTC test is more accurate in predicting likely survival time (on current treatment, at least) than scans.  I'm not completely sure about this, but I believe this is because the number of cells per volume indicates speed of metastatic spread.  And that, of course, tends to be a fairly big predictor of survival.

The disadvantages:

CTC tests do not always detect circulating tumor cells in the samples of particular people, even if they have advanced/metastatic cancer.  The circulating tumor cells that are sending metastases into distant areas of their bodies might be traveling via the spinal fluid, for instance, or the bone marrow.

CTC tests do not tell you where the tumors are, how large they are, whether they are growing, how aggressively they are growing, or if they are doing serious damage.  At best, they simply tell you if your tumors are more active, or less active, in sending out metastasizing cells.

The reason I am anxious to take this test is that the other blood tests that are indicative for breast cancer have not been effective for me - no matter how advanced my cancer gets, the results for the standard tests stay the same.  So I've been dependent on scans to tell me about whether or not a treatment is successful, and in at least one case that meant that my cancer was allowed to grow unchecked for several months, leading to a gain of nearly 20 extra tumors.  One more progression like that (or frankly, considerably less than that) will be the end of me. 

So knowing quickly whether a treatment is working could literally be a matter of life and death for me.

Wish me luck.  I need it.

7/15/11

More Pink Business

As long-time blogger friend and newly diagnosed BC Sister Nancy points out, my KomenWatch link was no longer working.  So I fixed it, I hope... and added a couple more links in my BC Info section.  Thanks for reminding me, Nancy.  I'll try to add some more useful sites to that list for you in the next few days.

It's worth visiting the KomenWatch site; they've posted a few new articles recently, the latest on Komen's marketing of two new products and how that sort of marketing impacts the theoretical bottom line of a supposedly non-profit agency.  Link from that article or this to Geoff Livingston's comments on 'Cause Competitiveness' and how it affects the bottom line of non-profits - assuming that the bottom line of a cause-related organization is to find a solution to a particular problem, and thus to eventually put itself out of business.  He raises points well worth pondering.

7/9/11

What Could Be A Significant Breakthrough

Dana Farber has a new cancer treatment in the works, and it looks like it could be a doozy.  I doubt the studies will come soon enough to help me, but there is hope that the treatment could be around for my younger family members and their friends, if the time comes that they might need it.

This treatment involves what are called PARP inhibitors, which previously seemed to be effective only for a rather limited number of people with breast and ovarian cancer - those who lacked functioning BRCA1 and BRCA2 proteins.  These BRCA proteins help to repair DNA damage to cells, but seem to be particularly effective in repairing DNA damage to cancer cells, which means that the cancer cells are able to quickly find ways to protect themselves from damage, and to continue growing.  Which is why treatments tend to stop working after a period of time.

PARP inhibitors prevent less serious DNA damage to cancer cells, which in combination with lack of functioning BRCA proteins, leaves those cells more susceptible to being killed off by treatments such as radiation and chemo.

Another protein, CDK1, regulates cell growth and is overactive in many types of cancers.  Dana Farber's recent studies indicate that CDK1 is a necessary activator for BRCA1, and that a CDK1 inhibitor can be used to disable what would otherwise be working BRCA1 proteins, making the PARP inhibitor functional for a larger number of cancers.

Not only does it look as though this combo of PARP and CDK1 inhibitors might be very effective for at least some people, but it also seems to be non-toxic, as it only affects cancer cells, and largely leaves normal cells alone.  Welcome news for those of us on toxic treatments; we hardly need to add more poison to what we are already taking on.

This seems like a very exciting development to me.  If you are interested in getting a more in-depth (and probably more clear) understanding of this potential treatment, you can find a good article about it - and links to even more pertinent information - here.

6/5/11

Now and Again

I've had a bit of a rough week.  I had a sudden ramp-up of hip pain this past weekend, ending with a trip to the ER for high fever (102.8 F, which is considerably higher than they like to see temps on a chemo patient, since we don't have proper immune function to help us recover from infection).

They couldn't find the reason for the fever, but pumped me full of saline and NSAIDs and sent me home - after all, I had a chemo appointment the next morning.

The pain in my hip has been joined by fairly severe leg pain, so I haven't been sleeping well all week.  And the Abraxane is raising my blood sugar to unprecedented levels, which leaves me feeling rather dizzy and unwell.

But all is not lost.  Or at least, hopefully there is some hope that things aren't dire.  From the patterns I saw last weekend (fever lower after 1/2 liter saline, lowered to normal temps after next day's additional 1 liter saline w/chemo), my feeling is that the fever was actually caused by dehydration and perhaps bad electrolyte levels... because now I'm building up a fever again.  I don't know WHY I'm suddenly prone to dehydration - well, it's been hotter, so I've been sweating a bit more than has been the case previously.  But only a bit.  You wouldn't think it was enough to cause major problems, but who knows what chemo does to the individual system?  Nothing is working the way it should.

But at least it's helpful to know what's going on, at least in part, and that something can be done about it.

So.  If the fever is still there in the morning (I've been forcing fluids all afternoon and evening), I'll go in to the ER again in the morning and get a nice refreshing saline drip, in hopes that it will give me enough fluids to keep me reasonably functional for a week or so.  And maybe have them check out the leg while we're at it.

Wish me luck.  I'm heading out on a trip soon... I'm hoping to enjoy it from somewhere other than an ER bed!

5/31/11

How Big Pharma and the Government Work... For You?

This isn't about cancer - yet it is.  Or MS - yet it is.  Or Parkinson's Disease - yet it is.

This is partly about Lyme disease - which is a rapidly spreading epidemic that we aren't hearing nearly enough about.  It's a bigger risk to you and your family's health than West Nile and AIDS combined.  If caught early, most people can avoid serious effects - but some will have serious, even deadly consequences, and need more serious treatment.

My mother-in-law, and many of her neighbors, got Lyme Disease, and got the more serious neurological and immune system versions.  They had flu symptoms, cognitive function issues, became wheelchair-bound, clinical depression, debilitating nerve pain, movement disorders, immune system disorders.  My mother in law was eventually able to get the long-term heavy-duty antibiotic treatment that treated the problem.  A treatment that now, because of the actions of a few individuals, you and your friends and family will not find available.

And so the documentary is about Lyme Disease, but it is also about how the government and insurance companies and Big Pharma work together to keep you sick, and even dying... for profit.  Not because they are evil, but because it's easier (especially on their pocketbooks) than thinking about the long-term consequences of their actions.

Many of the people who see this documentary will be shocked.  Which they SHOULD be.

We should be shocked enough to take action.

Watch the movie "Under Our Skin".  You can see it on Netflix Instant Watch, you can rent the dvd from Netflix, you can buy the dvd, or you can watch it on your local public television station if it is coming soon - here's a good link to info on the documentary and the calendar of showings on PBS stations in your state.

You probably won't be happy to know what you will know after watching this show - but if it helps a few of us avoid the more serious disease, and if it helps a few of us who do have the serious disease get better, it's worthwhile.  And if it starts making people aware of the way in which insurance companies and the FDA control research and healthcare in this country, and if they take action, perhaps we can find better treatment for other serious diseases in this country.

Breast cancer, for instance.

5/6/11

More Info On Research and Metastatic Breast Cancer

A little while ago, I wrote about the woeful state of current research on metastatic breast cancer.

Well, now the fabulous Donna Peach has written a post that you might find of interest on the subject - she links to an excellent presentation by Musa Mayer on the urgent need for research in this area.  Go there and check it out!

5/2/11

Oh, Leave Me Alone...

A lovely social worker from a local home hospice organization came to talk to my folks and I today.  We have another appointment with her and a nurse on Wednesday.  I'll probably talk about these things in more depth later.  But for now...

One of the many things I learned today was that generally as people get closer to dying, they tend to back away from the rest of the world, turning inwards to process their... well, their process.  They often do this for two or three months before their actual death.  They just sort of sense that things are going to change soon, and they go into preparation mode.

I believe that people can sense death drawing near.  I've experienced it.  My grandmother, who had always been resistant to  making plans or having discussions about her own passing, suddenly chased me down her walkway when I was leaving and dragged me back into the house, insisting that I choose the thing I wanted to inherit when she died.  I protested, since I was in a hurry and wasn't prepared at that time to think about such a thing.  I said that I would think about it and let her know next time I visited.  She continued to insist, and finally I chose something, gave her another hug, and ran to the car.  I couldn't understand why it was suddenly so urgent an issue - she was healthy for a woman her age, there was no reason to think she wouldn't survive many more years.

That conversation was the last I had with her.  She died of injuries from a car accident only a few weeks later.**

I realize that for the last bit, when I'm really heavily drugged up to relieve pain (or at least my expression of pain - boy, am I paranoid about drugs, or what?) I am pretty likely to mostly sleep or withdraw.  I mean, I tend to withdraw when I'm in pain, so that's not a big surprise.

But the question is this: I spent much of my childhood, and my adulthood as well, backing away from the rest of the world.  In some pretty significant ways, I've been more socially connected since my diagnosis - and my journey towards death - than I've probably been in my entire life.  Heck, I've probably been more ME than I've been in my entire life, in many ways.

If you had asked me five or more years ago what I'd want at the end, I probably would have said, "I want to sit quietly somewhere and just be left alone to read and think and prepare myself."

Now?  As I feel now, I want to be surrounded by my family and friends.  I want my cousins to visit, I want my aunts and uncles to visit, I want my sibs-in-law and their families, I want my mother-in-law to visit.

They are wonderful, and I love them.  I want to feel that love around me.  Even if I'm not conscious, I want people to read to me and talk to me, I want to hear music and listen to my favorite podcasts.

I remember when my father-in-law was dying, the family all gathered around him and sat vigil.  It was so wonderful, being able to share stories about him, all his dear and silly and funny and inspiring and frustrating history.  It brought his spirit into the room with us, even though he was not awake to participate actively in the discussion.  We laughed, we cried, we laughed again.  We were able to share with him our love, we were able to forgive, we were able to say goodbye; and it was good, it was healing, it helped us share and bond with each other, it helped us start down the road to healing from our grief.

I want that.  I want it for me, and I want it for my family and friends.  I want it to comfort and surround my parents and my husband and my son in those last difficult days.

Will I still feel that way in the coming months?  Well, I can't know for sure.  But it's something to discuss with my family.  And to keep thinking about.

Although perhaps I feel this way because I've done so much thinking and being on my own already.  Perhaps at the end we take care of the parts of our lives that we've neglected.

It will be interesting to find out where I end up.

And then the really big adventure begins...



**Please don't think me neglectful of my beloved grandma; she lived a 4-hour drive away, and I had a young infant with special needs at that time.  Rather, it was a sign of my affection for her that I was willing to voluntarily trek alone with said infant in order to see her.  I adored my grandmother - everyone who knew her felt similarly.  She was an amazing, extremely lovable person.  I still miss her.  If someone waits to meet us on the other side, hers is the face I want to see, and the arms I want to feel around me.

4/30/11

Counting Chickens Before They Are Hatched. And Beans. Especially Beans.

So the last few days have been a bit rough.

I wasn't feeling great on Easter Sunday, but I was still fairly steady on the pins, given the assistance of the Ugly Cane of Doom.**

On Monday I actually felt a little better.  I decided to spend the day working on some craft projects, in preparation for Shepherd's Harvest Sheep & Wool Festival - the plan being that I was going to have a space there and share it with friend Denise.  Awesome, got lots done - and then in the late afternoon I stood up and just about fainted.

The left hip was - and is - in agony, folks.  And will only just barely support me in a few painful hobbling steps.  Getting up and down the steps from our house to the sidewalk (in order to get to the car so that I can see my doctors, get my scans and chemo, etc) has been getting increasingly challenging and exceedingly painful.  At this pace, I may very well be wheelchair bound in a matter of a day or two.

And I'm in pretty nasty pain all the time.  It hurts when I sit, it hurts more when I stand, it hurts even more when I try to get into bed, and it hurts when I lay down.  Yesterday it was so bad getting into bed that I'm pretty sure my son and husband were watching to see if I was going to expire right there and then - I was shaking from the pain and weakness, and probably pale as a ghost.  Poor Bren announced to all of Facebook (or at least his corner of it) that I was on my way out. 

Today my feet and ankles are swollen up like balloons.  Don't know what that means, but I suspect it ain't good. 

That said, there are a number of explanations for everything that might have nothing to do with me being in imminent danger of shuffling off this mortal coil in the near future.

It is an unfortunate fact that tumors that shrink are just as dangerous to your bones as tumors that grow.  IF the chemo is working and shrinking the tumors, they are leaving airy cavities with very thin and fractured bone as structural support.  Lots of people with tumors in the bone have their bones fracture after successful chemo treatment (especially in the spine, since the vertebrae are small and already rather airy by nature.  The tumors in question here are in my hip/pelvis and femur, but although these bones are normally more structurally sound than the vertebrae, my tumors are quite large and numerous there, and they've already been fracturing for at least a year, so they are probably quite fragile, and I am no featherweight).

So this development could be caused by good response to the chemo, rather than no response to the chemo.  No way to know at this point.

I tend to be pessimistic, because it's largely been my experience that things don't work out for me medically, especially in dealing with pharmaceuticals - maximum side effects, minimal benefit.  And evidently recent studies are suggesting that Estrogen positive patients, and especially Estrogen positive/HER2 negative patients (among whom I belong) often get little to no benefit from Abraxane.

But I could very well be wrong.

The swollen appendages (hands, too) and the weakness could be due to spreading cancer, or it could be a side effect from the Abraxane - both swelling and weakness are a relatively common side effect for this particular chemo drug.

So.  Where does that leave us?

Well, my cancer could be galloping ahead - or it could be gradually receding.  We don't know yet.  I had a scan done on Friday, and I'll be seeing Dr. Bouncy to discuss the results and to plan our next step on Tuesday morning.  I will report at that point.

Things do not look good mobility-wise, either way.  I am going to have to make some fairly quick decisions, some major concessions and sacrifices to the cancer, and lots of organizing, in a very short period of time (perhaps a matter of days).  I may have to move to my parents' house so that I can have people around to fetch and carry for me during the entire day, instead of just the 2.5 hours between 7:30 and 10pm, when the dear husband is home from work.  I may have to go to a hospice or nursing home or hospital for care if the hip entirely gives way - at that point I am likely to be bed-bound and in a good deal of pain.  Or things may stabilize for a while.  Hard to know at this point.  Hard to make plans.

By the way - my insurance is happy to pay thousands and thousands per week for chemo treatment that has no proven ability to extend life for even one day, but is unwilling to pay for nursing home care (hospice coverage is limited, and they won't allow you to treat the cancer actively while there - hospices are for 'palliative care' only), either of which is considerably cheaper per week than many of the chemo treatments, certainly cheaper than the chemo treatments I've been on so far.

I'm just saying.


**I'm convinced I would have been a great swords...person.  I can pick up my shoes with my cane and put them on, I can pick up my purse with my cane, I can write in the sand with my cane, I can (gently) push The Cat's butt along with my cane,  I can push fallen objects back to the owner with my cane, I can stab or threaten or whack people with my cane.  I could also walk with my cane for a while, which it turns out was pretty cool, compared to NOT being able to walk with my cane.  The cancer, it sucketh every day.

4/27/11

Speaking of Medication...

My current chemo regimen involves sitting in the infusion room for 4-5 hours, which is a fair chunk of time.  Most of this time is taken up in simply waiting for my medication to be prepared.

The reason it takes so long is because they will not start preparing the medication until I'm actually sitting in the infusion room.  And the reason they will not start preparing my medication when I get to the waiting room, or when I get my blood drawn for labs, or when I see my oncologist (I try to do these things on the same day I do my chemo infusions, so that I only waste one day per week in sitting around the oncology clinic) is because each chemo round costs thousands of dollars.

So if my labs came back saying that my blood count was too low to get my chemo, for instance, we wouldn't have wasted several thousand dollars worth of medication.

The reason I mention this is because for many under- or un-insured patients, this medication is out of reach.  As are many of the chemo drugs and other potentially lifesaving treatments that their doctors might otherwise prescribe.

What can these people do?

Well, the wonderful people at Good Days have a Chronic Disease Fund which can help make up the difference between what private insurance and/or Medicare pays for and what the doctor orders.  And they pay the doctors and pharmacies directly, so that most patients don't have to deal with continuous piles of paperwork.

They don't just cover breast cancer, either.  They cover an entire list of devastating illnesses that not only affect people's physical lives, but also their financial lives.

It's a good place to donate money if you want it to go to help patients directly.  You could quite literally help to save someone's life.  That's a pretty good deal.

And it's a good place to go if you are a patient who needs help.

4/23/11

Instead of Bracelets...

October is months away, and that is starting to look like a long time from now.  So I am going to address this issue now.  Don't worry - if I can, I'll be bugging you in October, too!

***********************

Metastatic disease is the cause of over 90% of all breast cancer deaths, but accounts for less than 3% of the current studies on breast cancer treatment.  More than 30% of stage I-III breast cancer patients progress to metastatic disease (the stages of cancer refer to how far the cancer has spread, with stage I meaning that the cancer is in one spot, stage IV meaning that the cancer has spread to a location away from the original tumor and surrounding lymph tissue).  Many more are initially diagnosed at stage IV.  Over 40,000 people die of breast cancer every year.

Organizations such as Susan G. Komen rave on a lot about breast cancer awareness and survivorship, but awareness that metastatic breast cancer is still incurable and deadly is still dismally low.  At best, we are the invisible - when we are seen at all, we are seen as the monster under the bed.  At a recent meeting of metastatic patients, one gal admitted that when she went to the BC support meetings at stage 1, she had deliberately avoided the metastatic gals, feeling that somehow their disease might be caused by some contagious weakness. Most metastatic patients find this behavior to be the rule, rather than the exception. 

We also find that even among our families and friends, myths and misunderstandings about our disease prevail.  We find ourselves explaining again and again that we are never going to be able to stop treatment, get off the chemo, be cured. 

Until a cure is found.  And that event is nowhere in sight.

If we are going to find a cure for breast cancer, and an effective treatment for metastatic disease, we cannot depend on the Pink organizations, or on the standard research organizations (Big Pharma, etc).  We are going to have to resort to private funding of organizations that finance innovative research.

One such organization is Metavivor, which promotes understanding of metastatic disease and funds research specifically aimed at curing metastatic breast cancer.  If we are going to keep your grandmother, mom, daughter or niece from dying of this disease, organizations like Metavivor are our best bet. 

Skip the sassy bracelets, the pretty pink ribbons, and the clever t-shirts.  Instead, let's face the monster head-on by putting our donation dollars into research, rather than marketing.  Let's get ourselves to the point where awareness will truly save lives...

3/12/11

Home Again, Home Again...

I was lucky enough to have a bit of a break from the bone pain that coincided perfectly with the Metastatic Breast Cancer Retreat, which allowed me to have a wonderful time with all the truly lovely women I met there.  I cannot thank the folks at the Breast Cancer Recovery Foundation and the staff at Sundara enough for their kindness and the care that they lavished on every detail of the retreat.

Once again, I cannot recommend BCRF's retreats highly enough, for those of you who are unlucky enough to be struggling with this nasty disease.  They are a true blessing and a joy forever.  If you love someone who has been struggling with their breast cancer diagnosis and/or treatment, please recommend the retreats to them.

And please send BCRF a nice donation, if you can - they depend on the kindness of donors in order to keep the cost to the retreat-goers FAR below the actual cost of the event.  The BCRF folks are truly inspired by love, and are dedicated to their cause to an almost ridiculous degree; they deserve support on a grand scale that reflects the size of their hearts.

In the meantime, I have (regretfully) plunked back down from that bit of paradise and am back to reality.  In my case, reality means that the bone pain is back with a vengeance (darn!), I need to get my taxes done (yuck!), and I have my third chemo treatment on Monday.  Probably by myself, since the poor folks have been struck down with the Grue of Doom (which largely involves a long stretch of very nasty and seemingly intractable bronchitis, among other things).

Yeah, reality bites.  I think I'll go comfort myself.  I saved some chocolate from the retreat - reality may bite, but I can still bite back!!

2/21/11

They Don't Tell You This Part

They told me that I would probably start losing my hair, probably in big clumps, somewhere between 2 and 4 weeks after my first chemo treatment. 

I am slightly ahead of schedule, since I started losing my hair last night, 3 days short of two weeks.

BUT I'M NOT LOSING IT FROM MY HEAD YET...

(nobody mentioned this particular possibility, I wonder why?)

:D

2/18/11

Chemo: After The First Treatment

The Adriamycin/Cytoxan chemo cocktail kills off your blood cells.  White, red, platelets, everything.

This leaves you at risk for several nasty side effects, one of the most concerning being a vulnerability to various types of infection.  Without your white blood cells, an otherwise minor infection can become deadly.

So 24 hours after the chemo treatment, I had to go back to the infusion center to get another IV - in this case, a bag of saline (to make sure I was getting well hydrated) - and an injection of Neulasta.  Neulasta forces your bone marrow to make white blood cells at a rapid rate.  Unfortunately, it can't make the white blood cells travel out of the marrow at a greatly increased rate, so the packed-up cells do tend to cause bone pain in the most productive areas - the hips, the spine, the thigh bones, the breastbone and/or collarbone.  

So, more side effects added to the ones from the chemo and the ones from the anti-emetics and the ones from the pain medications.  

Hooray.

For the first 5-6 days, I had a fever, headaches, nausea, joint and bone pain, fatigue (sometimes sleepiness, sometimes weakness), shortness of breath, constipation and diarrhea (swinging back and forth, what fun!), intestinal bleeding, cough, a weird taste/feeling in my mouth, sinus pain, ringing/hissing in my ears (I am told this can be a sign of liver toxicity), poor quality sleep.

Hydration is essential - without it, mouth sores and more severe side effects are expected.  I am told to drink at least two litres of water per day.  I am a dehydrated creature by habit and preference, so drinking this much is a real challenge, and sometimes it's a very uncomfortable one.  But I do it, because I suspect that I'd find the results of not doing so even less appealing.  

I am also instructed to swish/gargle with saltwater and/or baking soda several times a day, and to avoid acidic things like tomatoes and dehydrating things like caffeine.  Also no herbal things for several days, and no anti-oxidant supplements during the course of chemo (there is some controversy over this last item - the general advice is to follow your oncologist's directions).

The last couple days have been a bit better as far as side effects.  The fever has dissipated, the nausea and headaches have lowered to a dull sort of background noise, and some of the bone pain has abated somewhat.  Other side effects are still there to one degree or another.  I am told that on or about Day 10 there can be a sort of Second Wave, when the blood cells are at their low point.  

In the meantime, I am grateful for small mercies.  Especially since we have another member of the family in health crisis mode, which has kept my mom hopping - and me to a lesser extent.  

On Monday morning I will have the surgery to put in the port and catheter.  On Thursday I am scheduled for my second round of chemo.  I am told the side effects are accumulative in both range and intensity with each round.  Can't say I'm looking forward to it.  But I will try to look at it as an opportunity for this Intrepid Reporter to give you the straight scoop on chemo treatment.

2/12/11

Early Days of Chemo

I'm going to report on the experience of having chemo for a while now.  Those of you who have already had it probably won't be interested in what you already know, but for those who are curious or those who are about to have it, I hope this will be of some help.

The first thing is the meeting with the nurse practitioner, who goes over your likely side effects and gives some pointers on how to handle them... and how not to handle them.  No herbs for a few days before and after, lots of water, eat 6 or 7 times per day, etc.  Then a brief stop in the waiting room, and then into the infusion room for the chemo.

The infusion room for my oncologist is in the clinic, rather than being in a hospital setting.  I've been in there already for my IV bone drug (ibandronate/Boniva), so the environment and setup is familiar now.

It is a fairly large room, broken up into four sections, with windows on one end and the open end facing the nurses' desk opposite.  High on each dividing wall there is a flat screen television, so that the patients sitting along the walls can watch something relatively insipid and harmless while they are held captive by their IV lines and needles.  I like to get treatments in the morning, so I always get those one of those morning television shows with the cooking tips and news of the stars and weather reports.  The televisions are set to SAP, if you want to know what's going on, you have to read the subtitles.

The chairs are set along the dividing walls, 4 or so per side.  Each has a tray attached to each side, and is a lounger-style chair so that you can put your feet up if you like.  There is a more standard hospital-style chair next to it, in case you want a support person with you.  My mom is with me, as she has been for most of my appointments.  It's a comfort, and also it is helpful to have a second point of view and an advocate there when things get tough.

There is also one of those poles from which they hang IV bags, with a pump/monitor attached.  The nurse sets you up with your IV; how she does this depends partially on whether you have a port or not, and what sort of drugs you are to take.

I don't have my port put in yet, and I have very difficult veins.  We have called ahead to make sure that the one nurse who has been able to get into my veins well is going to be there.  She meets us at the door and relates that both she and Dr. Bouncy are concerned about getting these drugs in through the veins, since they are very dangerous if the needle slips out (as has happened to me before) and allows the drug into the tissue.  If she cannot find a good solid straight vein, and a spot unscarred enough to get a solid fit with the needle, the treatment will have to wait until I get a port put in.

She puts warm towels on my arms, to help bring the veins up closer to the surface, and we talk a bit about her kids and the weather.  She offers a choice of juices or ginger ale - the next day, when I go in for the Neulasta injection, I am offered crackers for nausea (I am gluten intolerant, so I had to refuse, but I appreciate the offer).  She finds a good vein lower down in my arm, gets the needle and line in well, flushes my veins with a bit of saline solution, and starts with the Adriamycin.

Adriamycin is a 'push' - it is attached to the line down near the arm, and pushed in by the nurse through two syringes (to put it all in one syringe would make it too large and unwieldy for the nurse to handle, and since the process is delicate, you want your nurse to feel very much in control).  She checks occasionally to make sure that we are getting blood in the line when she pulls back on the syringe a bit - a sign that the needle is still in the vein.  I have trouble detecting this, as the Adriamycin is a bright red, but she tells me that she has developed 'an eye' for it.

After we are done with the Adriamycin - about ten minutes or so - we move on to the Cytoxan.  This is a regular IV drip, a colorless liquid in a large bag.  After a while, I start feeling pressure in my eyes and face - and find out from the nurse that Cytoxan can cause sinus pain for some people.  She slows the drip down in an attempt to mitigate this effect somewhat, but at this point it's a bit too late.  We continue with the drip and then give me an extra bag of saline - hydration is important, and I tend towards dehydration, so they want to give me a good start.  This is especially important because the Cytoxan can be very irritating to the bladder, so they want you to pass it through as quickly as possible.

We arrived in the IV center around 8am, we are done with the IV at 11:15.  It will be slower next time, because over the next days I continue to have sinus problems from the Cytoxan.  On the way out, I use the bathroom and find that the Adriamycin has caused me to paint a beautiful sunset sort of tableau in the bowl... bright red in, bright red out.

Mom and I go to lunch afterwards, then go to her house, where fatigue hits me and I pass out on the couch for a couple hours.  I wake myself up a few times snoring - the sinuses continue to be a problem days later.  I go home, have a bit of dinner (chicken with rice), watch a movie/dvd with Scott.  I go to bed early, headachy and a bit more nauseous; I do seem to get more nauseous in the evening.

So that is the first day.  I'll report on the rest later - for the moment, I'm tired and nauseous and headachy and a bit feverish, so I'd better go stuff myself with meds.

Wheeeeee....