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Dead or alive; ask the FDA???

Monday, October 4, 2010 in Cancer and media, Decisions, delusions and befuddlement, after cancer, cancer prognosis, medical care, remission from cancer by admin | 1 comment

I woke up one morning and discovered via the leading newspapers that the FDA is withdrawing the cancer drug Avastin, the main focus of my cancer treatment.  It seems that women with stage 1V breast cancer do not live long after taking the drug and may die of its side effects.  Oh my god I thought, I must be dead.

I went immediately to my calendar to count the months between my last treatment and now.  I had finished treatment with Avastin and parataxal on the fifteenth of April and now it was five months later, I had just passed my live by date.  The news reported that I had six more months to live at best.  I’ve had Avastin and Paclitaxel together and according to the report my last few months have been easier but my life span has not been increased.

I must be having terrible side effects … or so it said in the news.  In actual fact, I feel better all the time, and most of my lasting side effects come from surgeries.  Although I still have a tiny bit of cancer, it is inactive.  Embarrassed by not living up to the newspaper statistics, I didn’t know where to put myself: was I dead, dying, or suffering silent but deathly side effects?

The FDA decided against Avestin as a treatment for Stage 1V breast cancer because it does not extend your life expectancy or add to your quality of life.  OK I understand that – officially I am dead or soon to be dead, and my improved life quality is imaginary.

So what about the 17,000 American women who are being treated at this very moment with Avastin and have just heard the news that it was being withdrawn?  The reason for this was supposedly nothing to do with the cost or politics.  Right, we all believe that, don’t we?

The last people we should feel sorry for are Roche, the drug company who lost a significant amount of money off their shares. But the point is that according to our congressmen their decisions have nothing to do with the cost of the drug, only its efficiency.  PLEASE  – the media has made sure that everyone knows that Avastin is expensive;  Congress would have to be idiots to disregard this information.  But of course politics doesn’t come in to it.  OH NO?

When have I ever asked the government of the USA (where I was born) or the UK (where I now live) what drug I should take?  I get led all over the planet by media proposing cancer cures but the government now wants to have its say. I think if my medical treatment is left to this cumbersome bureaucracy I should take an overdose and be done with it. Reading the scope of responsibility for the Federal Drug Administration described in wikipedia is enough to make you shudder.

The argument pro the FDA decision to withdraw the drug says that patients (women) are desperate to do anything to save them from dying from breast cancer.  They would even have the government pay – or self pay – for treatment that extends life for a couple of months.  OH MY we are naughty, naughty women.

Since American women may now have to pay for their own Avastin, they will have to ask themselves if a few months of life is worth it.  I think about how much my illness has cost, and I wonder.  It is a horrible question to have to ask yourself, and it is a question only answered in TV – Hollywood fiction land.  ‘She was alive to see her daughter married.’   Whether you should take the drug or not is as difficult to answer as ‘What is life?’ or ‘What happens when we die?’.  All the medical ethics courses in the world can’t answer that question for us, nor can a government committee.

Just as I was made certain that death was inevitable; and then, guess what?

Reuters:  WASHINGTON – The U.S. Food and Drug Administration Friday (Sept 17) delayed a decision involving the use of Roche Holding AG (RHHBY, ROG.VX)’s top-selling cancer drug Avastin in advanced breast cancer.

Roche’s Genentech unit, which sells Avastin in the U.S., said the drug’s review was extended by three months to Dec. 17. The company said it submitted additional information to the agency, but wouldn’t provide details.  The FDA usually follows the advice of its panels of nonmedical experts, but isn’t required to do so.

Since the July panel decision, the FDA has been bombarded with letters and petitions from women, some congressional lawmakers, and groups such as Susan G. Komen for the Cure and the Ovarian Cancer National Alliance. In a recent letter to the FDA, the cancer groups urged the agency to allow use of Avastin for breast cancer because the drug has been shown to work well in some patients.

OK I get it, I may not be dead yet.  I have got to the point where I am uncomfortable in purgatory.  PLEASE let them make up their minds.  Thank goodness my oncologist the renowned Dr Margaret Spittle doesn’t have to consult a committee every time she makes a decision about my care.

Meanwhile, let’s consider the financial aspect.

The Avastin (which no doubt put my cancer on hold) was according to the FDA a waste of money.

Readers of my blog, Cancer Curmudgeon, know I fantasize about going around the world on a jet plane.  It only takes a month and without any drugs at all I might have still lived that month. Avastin is probably at least a contributing reason I am still alive and my insurance company wisely covered this medication; but they will not cover the next part of my plan, the travelling.

Darn! I could have saved someone some money.

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Did Crazy wisdom finish off my cancer?

Friday, July 2, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | 1 comment

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Whatever has worked, whether hocus pocus or not, my cancer has been put into a deep, hypnotic sleep – please don’t wake it.

A month ago I had an MRI scan to find out if the treatment for stage 4 breast cancer had worked.  After operations, radiation and chemo, the scan showed that a lot of my cancer had gone, but there remained a few cancer cells which were most likely inoperable and difficult to radiate because they were embedded in nerve tissue.

After fifteen years with cancers coming and going, I knew the rubric.  With the prospect of ‘no more treatment’, it was time to check on my will and make funeral arrangements.  I visited my surgeon and tried to cheer up my oncologist and friends, but in my heart I thought I knew.  Further surgery was unlikely and radiation with a cyber knife, which was mentioned, was one new fangled invention too many.

My oncologist and surgeon recommended a CT/PET scan. Too optimistic, I thought. In my negative frame of mind I thought only fleetingly about the effects of radiation from the scan (see last blog) – I wasn’t going to be around anyway.

But the hocus pocus machine must have magically transformed my negative energy into positive. My oncologist was disbelieving when she called to say my cancer was inactive.  I ran to her office in fear she might have got it wrong.  Neither she nor I believe in magic, and she methodically checked with the technicians and pathologist to see if the machine was broken on the day or if the pathologist who had read the scan had forgot his glasses.  All confirmed to her that the cancer was inactive.  I think we were both in shock.

I began to tell my friends and they all asked, ‘Why? What had happened between the MRI and the PET/CT scan?’  The answer is, I have no idea.

Please cast your vote.  You can put money on any or all of the following:

My negative attitude

During that time I was reading a book called ‘Final Exit’, and listening on line to lectures on death from the philosophy department at Yale University.  Being negative always puts me in a good mood.

Moxibustion

Who cares if it works or not?   It is such a great word.

I started this around the time of the first scan.   Walking up the circular stairs of the Kite clinic on New Bond Street felt like going to a high price cosmetic surgery clinic.  Gerard Kite uses a form of acupuncture in which magic moxi is made into heated candles and are placed one at a time on various acupuncture points.  After the moxi is in place, a few needles follow, which penetrate the skin and feel a bit painful for a second or two.  The whole thing takes only a few minutes but it did give me energy and who knows what else.  I had about ten sessions between scans. I had put off going because the expense seemed too high but I decided the hell with the money, I wasn’t going to take it with me.  I think it had done me a world of good.

The magic substance – Orgonite

My friend Martin Sexton, an artist, put Orgonite all over my bedroom.  He takes this very seriously.  It is a substance devised by Wilhelm Reich, a psychiatrist who worked with Freud until he went off in his own mad direction.  He believed that he could harness the energy of the orgasm in a material made of resin, white quartz, rose quartz, and aluminum.  He made cylindrical tablets that were full of magic properties.

Martin’s tablets were made in the shape of Silbury Hill. He bathed the tablets in Chalice Well at Glastonbury, in both the red spring and the white spring;  shallow buried and retrieved them on Glastonbury Tor; placed them at the other sacred places of Wyvern Hill, Chalice Hill, Gog Magog Oaks, and Stonehenge, and then finally placed them on the erect phallus of the Cerne Abbas Giant.

They have sat on the windowsill near my bed during the time between scans and who knows?

The summer solstice

The PET scan did happen on the day of the solstice; maybe the druids intervened?

Prayers for the atheist

I do appreciate it when friends and people I don’t even know send me prayers.  I do have a close friend in Australia who is a minister for the Church of England. He said he wanted to pray for me but he needed me to be specific.  What exactly did I want him to pray for?  I hope I said something relevant because I like the idea of being specific.

The shaman – the doctors

To give them their due, the doctors worked hard to get these results.  At times their work seems more on the side of magic than science.  Dr Margaret Spittle, my oncologist for fifteen years, planned my treatment with the aim to get rid of the cancer (a stage 3 solution) rather than watch it grow and take over (stage 4).  She planned the operations, radiation treatments and chemotherapy.  I can’t say that I always had faith or thought positive things about her.  It has been a difficult two years.

The fight with cancer is no doubt not over, but for now,

Ssh, Ssh, the baby is sleeping…

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Doing the cancer-wait-wait … and more wait

Monday, June 21, 2010 in Decisions, delusions and befuddlement, Uncategorized, cancer prognosis, medical care by admin | Add a comment...

Everyone talks about the traumas of the cancer treatment itself, but let’s take a few minutes to think about the trauma of waiting… think World Cup results being postponed for a week after you have watched a game under tension; think having to wait six months for a letter saying you have passed or failed your driving test; think waiting for a kettle to boil; and then you will understand the last few weeks of what is known as my life with the c. word.

I have done the rounds, the surgery, the radiation and chemo. Yet the MRI has shown the cancer cells march on fiercely holding on to a few centimeters of my body’s territory.  Their tenacious nerve fibers are buried somewhere in my chest and under my arm.  Just a little over one centimeter across,  the size of a healthy leech, they no doubt learned their methods in the primeval rain forests where leeches and cancer cells must have marched together in a war against a stone age population.  Perhaps the cancer cells survived by burying themselves deep in bodies, while the leeches hung on to the skins of their victims.  If only we could burn the cancer cells off like we can leeches.

Off track again, the present wait is about doctors wondering whether any further treatment is possible.  Can the cancer cells be dislodged from the nerves by surgery without causing a huge amount of damage, or could a cyber knife deftly radiate just the cancer cells.  In the last two years (the length of this last bout) I have mounted an attack against cancer with state of the art treatment. It is difficult to imagine a world where there is no more treatment available.  It feels like the troops are pulling out of the cancer war leaving the native (me) at huge risk.

I wait it out. Two more days until the PET scam (scan/scam. Freudian slip).  Just to remind ourselves, a PET scan is a radioactive examination where  a strange potion is injected and you can’t go near children for a few days.  I am slightly freaked out by the fact that my wait is blamed on the intergalactic machine, which is broken, and I am convinced that I will be the patient testing the repair.  You know the feeling, when you drive your car away from the repair shop only to turn around and drive it back when the strange noise recurs.  My worst thought is that it will develop a radiation leak.  I had all these paranoid worries when I went to sleep last night only to wake up this morning to read,  in an online article in the New York Times ['Americans get Most Medical Radiation in the World']:

“… Too much radiation raises the risk of cancer. That risk is growing because people in everyday situations are getting imaging tests done far too often.  [...]

Questions to ask about radiation scans:

–Is it truly needed? How will it change my care?

–Have you or another doctor done this test on me before?

–Are there alternatives like ultrasound or MRI?

–How many scans will be done? Could one or two be enough?

–Will the dose be adjusted for my gender, age and size? Will lead shields be used to keep radiation away from places it can do harm?

–Do you have a financial stake in the machines that will be used?

–Can I have a copy of the image and information on the dose?

[Dr Fred] Mettler suggests bringing a blank CD or thumb drive with you.

”You should have all of your stuff digitally on something,” he said. ”I keep mine on my laptop.””

I love these questions because two weeks ago when I had my MRI I was bombarded with irrelevant questions like ‘Are you pregnant?’  Now I have questions of my own.  Yes, many doctors have done many tests.  How many are you allowed?  At 70 I’m sure I’ve had too many.  My favorite in the above list is: “Do you have a financial stake in the machine?”  I’ll ask the first technician I see and I bet they say, “my job depends on it.”

I would love to bring a CD with me and get a recording of my examination.  It could record the technicians discussing their social lives or me lying in a tube with Frank Sinatra as background music.  But as to regulating the dose of radiation, I think I’m the last person who should have a say in it.  I barely know how many gallons of petrol I need to fill my car or how many kilos of anything feed four people.

When I finally got to the scan I needed to lie for an hour on an examination bed and wait for the radioactive stuff to go through my body.  I wasn’t allowed to read because engaging my eyes meant I failed the exam.

My ears were attacked by an hour of Frank Sinatra which was particularly irritating because I was trying to visualize myself laying on a sandy beach and drifting off to sleep.

My ‘funny bone’ has developed a cancer of its own.   My sense of humor gets darker and darker.  My friend asked if I could go to a concert in about a month and the response, “If it doesn’t interfere with my funeral” keeps popping into my mind.

Tomorrow the wait will be over.  My voice has come back and my hair is looking a bit better, I have more energy and my friends say that I’m looking well.  I walked out of my flat today and a very serious looking  Indian sikh stopped me and said, “you have a lucky face.  This will be a good month for you.” Moments like this make me love London – and who knows he may be right.

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Searching for Nirvana

Wednesday, May 19, 2010 in Decisions, delusions and befuddlement, food by admin | Add a comment...

In my quest to renew myself after two years of cancer treatment I signed up for four days at a fancy heath spa outside of London. It seemed like such a good idea at the time. When I last visited it had been going through a Japanese period, but this had all changed in favor of commerce. Now hen parties were accommodated, and business groups attended week-long wellness courses and fitness training .

An elderly nanny checked me in and a retainer took me to my superior room.  It was lovely, overlooking the garden, and I decided that bed would be my first choice for activities. I tried the TV and it had twenty channels; ten were in Arabic. The ten in English looked promising, but within five minutes I broke the TV and could get no channels. Then I tried the bath that had amazing water pressure, unknown in the UK, but I couldn’t empty it.  When I finally left the room and returned, the key no longer worked. Superior rooms need superior minds.

I had arrived too late (by five minutes) for lunch and I was directed to the busy new snack bar.  I found that whoever dreamt up the menu thought coping with stress, not trying to diet, was foremost in the residents’ minds. I tried to find something healthy and ended up with a carrot and hummus wrap, followed by an oatmeal cookie.  I decided not to worry about health if it was going to be tasteless.

Chemotherapy had left me in need of a facial.  So I signed up with the nanny receptionist and I waited and waited for the therapist while lots of twenty somethings in white uniforms who looked like spaced out aliens walked past me. Naughty me, I was in the wrong place. Finally, my very own twenty something showed up.  I made the mistake of telling her I was just finished with Chemotherapy.   I thought she might run out of the room, but I could see her mentally reviewing her instruction book.  She said that if I had cancer I could not have massages BUT IF IT WAS TERMINAL, I could do anything I wanted. I hadn’t considered this as a ‘final exit’ possibility.

That evening I decided to brave the group table and I was treated to a long discourse on how to cure my laryngitis. (A paralyzed vocal cord caused by cancer.)   At the end of dinner, I must have got tired and cranky and after telling the waitress that the cod was cold and had bones in it, I confessed to my companions that I had cancer and that I didn’t think lemon tea and ginger, whiskey or lemsip would help my voice.

When I found out the next day that my dinner companion, who I assumed was a wealthy client, was a blind diabetic who was illiterate, I felt badly.  She had been brought up south of Naples in one room with an abusive father, a goat and a sheep.  She was kept at home to work on the farm and never sent to school. At eighteen she was sent to London as a maid and worked for Clement Attlee’s family before he became prime minister. Now she comes to the spa twice a year and is treated like royalty.  I believe the owners have a charity, which provides for this. It made me feel more positive.

I decided to keep quiet about cancer and try the Thalassotherapy pool.  I had a swim in my warm dream pool and my ‘spaced out therapist’ turned on the strong jets and started chatting with another therapist.  I tried to climb up to the jets and started to slip on the steps.  I didn’t fancy drowning, so I kept safely near the edges. By the time I got used to the pool, the therapist paused in her chat long enough to say it was over.  It was an expensive 20 minute swim; I think the therapists take their revenge for what must be low paid rather boring work.

Next I met the chiropodist where I was able to relax and almost fall asleep. I woke suddenly when the point of her scissors stabbed my big toe.

I thought my Pilates workshop had gone well, but I was gently told that I wasn’t ready to exercise yet and I needed to do some walks first. Since I had trouble walking to class this seemed wise.

Having nothing to do on the last day I went to a clairvoyant.  That was as surreal as it comes.  My father’s spirit came into the room and after he told me how terrific I was gave me a trophy.  When I was back home I was reminded that my father had died on this day eleven years ago.  I have no belief in the spiritual world but that was about as strange as it gets.

I spent the last few hours in the drawing room reading an Agatha Christie mystery and I left just in time before Miss Marple found a corpse and had to call the nannies in for questioning.

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Health Care Passes; My own health care plan might fail.

Monday, March 29, 2010 in Decisions, delusions and befuddlement, cancer prognosis, food by admin | Add a comment...

It’s good to be alive when all odds were against it.  On the same day health care passed I passed my MRI scan.  My cancer has shrunk in size to a few nodes of less than one centimeter.  Two years ago I was diagnosed with three areas of metastatic breast cancer. After three operations, radiation, chemo and avastan, the cancers are reduced in size, one not showing on the scan and two less than one centimeter in size. Obama’s speeches on health care and the aggressive treatment I received worked.

Life takes as much getting used to as impending death. I have to get my mind off funerals and wills and on to living.  Time to get myself together.  Not an easy task at the best of times.  When I look at diet and fitness regimes I feel like ground hog day.  Been there and done it numerous times. I reread the South Beach diet, signed up for several low fat online diets and had another look at Atkins, even ordered the next book.  I’ve now been three days without carbohydrates.

I feel as divided about my own health care as the USA is about theirs.  One part of me wants to go on a diet and lose twenty pounds, another part of me wants to pig out and never mind the consequences.

Fitness is something else I’ve been there and done.  Does being alive mean I have to go back to the gym?  Could I still do a rowing machine, lift some respectable weights or do Pilates and keep my wig on at the same time?  It doesn’t feel promising.

So like Obama I have to make compromises. The bill that will get past my divided self will not be all that is needed.  It will not satisfy the part of me that wants to feel revitalized  again after two years of very aggressive cancer treatment and it won’t satisfy the other part of me that wants to lay back and let the chips fall where they may.

Like Obama must have done, I look at what there is to be worked with.  Overweight, exhausted, grumpy, pins and needles in hands and feet and worse of all no voice: recovery doesn’t look good.  If I could start small and get the first bill past my negativity, I could tackle a few modifications and improvements six months or so down the line.  I still have one more month of chemo treatments so I have time to make a plan that I can vote for.

As of three days ago I started on the no carbs diet, induction phase of the Atkins diet and phase 1 of South Beach. I started when I looked in the fridge and found it full of treats. Crowding the fridge were  chocolate cake, blueberry cheesecake, and  a few pieces of carrot cake.  It was as if the Republican tea party had held a meeting in the refrigerator. You couldn’t even find the vegetables. When you did, they looked pathetic, half frozen in the bottom drawer.

There were also a few ready meals that had enough calories to be a dessert.  My fridge was full of cauliflower cheese, spinach in a cream sauce and my current favorite,  creamy mashed potatoes.

Since I’ve had guests around, I’ve  felt justified  in keeping on hand a few boxes of organic chocolate bars. They have no calories because they are organic. Like health care information a few lies accumulate along the way.

Repeat after me: ‘organic chocolate has no calories and you can safely eat five to ten small squares a day’. It should be called orgasmic chocolate. In fact, it’s your duty as a citizen of fat land to eat one of each flavor a day and there’re a lot of flavors.   I actually didn’t have any chocolate left because I’d eaten it all.  I think I only once gave a guest a square.

Exercise is beyond me at this point.  I think it’s sitting next to the public health care option in my internal debate.  The only exercise I get is going out to buy food.  Unfortunately, there are two supermarkets, a food hall and five pastry shops within a radius of three city blocks, so a five to ten minute walk could bring home millions of calories.  I don’t even mind carrying heavy bags as long as they contain food.

I was thrilled that health care passed even with the compromises.  But my own health care bill looms ahead.  Will it be passed? I don’t know.  On one side are friends who say you look better than expected.  Whatever that means. And others who say it’s time to pull yourself back together, to start putting on your wig carefully, as it looks like you put a bag on your head (and feels like that too),  lose some weight, get some new clothes and start exercising.

So life after cancer holds its challenges. For now I’m glad health care passed and I’m glad to be alive. Both were against the odds.

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