Entries categorized "Pain"

Unhelpful Breast Cancer Treatment Side Effects and Coping Tips

This week I'm wondering why drug companies tippy toe around issues, passing out safety information along with long lines of text saying nearly nothing that's really helpful.

Case in point for me this week is Astra Zenica, the drug company that makes the anti-tumor medication that I'm having problems adjusting to. Let's just say that the side effects are dramatic, but the other option is doing nothing to discourage invasive cancer cells from popping up in unhandy places.

So I want to give it my best shot, and looked to the website for more information about how changing the timing of dosage, or _something_  might have proven helpful to some of the thousands who have already had experience with this drug.

I was less than impressed with the suggestions / information on their "in your corner" patient support website.

Their "Coping tips" for side effect consists pretty much of the following

  • "Talk to your doctor to discuss treatment options, such as over-the-counter pain relievers like acetaminophen or prescription pain relievers."
  • "Apply a little heat. Try using a heat pack or taking a hot shower"

Considering they've also been talking about the hot flashes and sweating, this just does not seem too helpful. Somehow I think that those aren't the kind of caring, creative, inventive, or even technical, nor especially smart things I was looking for from inside the company which should have all sorts of data from numerous patients who have taken the drug!

This stuff though? I'm pretty sure almost all their patients came up with these ideas on our own a couple of days ago before we decided to pull out all the stops and really try to get rid of the pain, heat, nausea, headache, moodiness, dizziness and all the rest by hook or by crook.

I have the scary feeling that we're on our own here, ladies.

I Wish We Would Have Known

What to Expect of Cancer

Spread of Cancer / Metastasis

Cancer Issues: Symptoms Signs and Side Effects

And these things may be of some help


 

Update: Five Finger Shoes give me the - er - um -

Though I sent a note to Vibram about those shoes you either love or hate, repeating essentially what I said in my earlier article about how I thought they might make cancer patients feel better - the five finger folks seem initially unimpressed.Fivefingerwhiteorange

I got a polite "dear John" esque letter in return; essentially don't call us and we probably won't call you.

Oh - and there was a caution to talk to my cancer docs before trying the shoes.

- heh - like that's going to happen. I'd use the shoes as an excuse to stop by the office and show off the shoe though.

This lukewarm response could have been because I contacted them through their web-form, which did not separate my lovely paragraphs and provided them with a page of what looked like run-on babble. I did not look like I graduated tenth in my class. Or maybe lke I graduated tenth in a class of twelve.

Or it could be that I did not name names. I should have told them that Devra from Parentopia had sent me or that tweeting about them could really help them since I made @guykawasaki's Alltop tweeters list!

(You think they know what twitter is?)

Speaking of Guy, I wonder if he wants a pair ofFivefingersprintred what Devra calls toeshoes to go with his orange crocs. Five fingers has a pair that's kind of red-orange - or one with bright orange webbing between the toes.

That idea is helping ease cancer pain already as I'm sitting here laughing. And all of our kids could refuse to be seen with us. Maybe they'd pay Vibram NOT to sell them to us! Luckily I just have less living at home than he does.

But off embarrassing our kids and back to toe shoes

OK - it was only yesterday so I'll give them awhile to respond but if they don't it'll be their loss since it would be super if they see the opportunity sponsor my trial of the funny cute adorable shoes that of course will make me feel like tippy-toeing around instead of lying in bed feeling like a truck ran over my chest . . . and then backed up so it could get my back too.

The next option is to take the $ from an acupuncturist appointment or a dozen yummy mocha frappuccinos I beg from @badwolf when she's out.

Focus on the finger

Fivefingerblue Sooner or later - I'm trying toe-shoes come hell, high water or really bad scan results when I go to Sibley hospital next week for tests. Which begs the question wouldn't these blue ones look cute in the CT scan macine with my adorable little gown?

And if I had them before surgery on June 18th I could sport them around George Washington University Hospital and cause a stir.

Oooooh yes - the perfect way to give a special focus on the finger - ten of them in fact - to the health care system.

Come on, Vibram. You KNOW you want to help me do that! Short of coming out with a GREEN five fingered shoe - the Frozen Peas Ease Pain model . . . ohhh wait now that's even better.

Hmmm . . this could be big for Vibram. Who do we need to explain to the finger guys just how big it could be? The name Scott Monty springs to mind.

Now that is a killer idea if I ever had one. Figuratively speaking of course.

The Power of Peas and Five Finger Shoes

Shoegrn There's not much that's comfortable about the whole cancer ordeal but when I saw another blogger talking about these shoes last night on twitter immediately the thought hit me that if a patient wore those shoes at least one part of them would be comfortable. If it were me, I might have a hard time taking them off.

Here's what occurs to me.  Does wearing fun comfortable clothing and footwear make a difference to cancer patients?

As a founding Board member of a cancer charity called the Frozen Pea Fund I see our mission going far beyond the initial large amount of money we raised that went directly to the American Cancer Society. I see us asking questions like this and helping to get answers about patients' comfort and outlook.

After all: Frozen Peas Relieve Pain

Since we have incorporated and become a non-profit we have made it our mission to help cancer patients in NEW ways using creative thinking, new technology, new media, and we hope for inspiring new results. So this "comfort" thing seems right up our alley.

Oh I know we can't prove that five finger shoes or other fun, comfortable wearablesTcellscancercell cure cancer but it has been shown that mental outlook is responsible for more than 50% of a patient's chances of survival!

BUT - I personally can't imagine looking down at my feet wearing these shoes and not feeling a GOOD emotion - thus releasing endorphins and all kinds of other good stuff that would help the busy T-cells get together and do the nom nom nom on the pesky cancer cells.

So to me that's now part of my mission in life. I want to try what I can, and share as I learn.

Frozen Peas are More than a Fund Raising "Gimmick"

Frozen Peas relieve pain. They can be applied to any spot that hurts. Though giving to the Frozen Pea Fund can help us do good in many ways large and small, helping cancer patients in personal and global ways the concept is a simple but far reaching one and involves much more than clicking an icon to donate.

It's a bigger concept than that - and involves your actions

  • It happens when you know information that could help cancer patients, and you share it because of the Frozen Pea Fund.
  • It happens when you have a contact you share because the Frozen Pea Fund brought a need to your attention.
  • It happens when you send a gift certificate for meals to a cancer patient because you are reminded that was even an option that someone across the country could do.
  • It happens when you look up a resource for massages in another area of the country & gift a patient you know, just because the FPF made you aware that might help
  • It happens when you set out a fishbowl at your next tweetup, talk about the concept of frozen peas reaching out to the community, and asked for folks to throw in a few dollars to help someone in your area or the FPF in our mission.
  • It happens when you drop off treats at your local cancer center to thank staff for the work they do.

Frozen Peas Ease Pain. Think of the good that you could do multiplied by a hundred of us, or a thousand of us.

So this article isn't as much about shoes as it is about sharing?

BINGO!

Although I'd like to try the shoes, wear them at the hospital, talk about them to staff, discuss with my contacts at other medical centers, and help other patients try five finger or other shoes to see if they could provide some comfort  . . beyond that, I'd like to see Vibram participate with the Frozen Pea Fund in experimenting to see how this small bit of fun might energize a cancer patient in a small way.

But this goes far beyond that little brainstorm
Peaswithmint
Like pesky little frozen peas rolling out of a bag and scattering to all corners of your kitchen, the Frozen Pea Fund provides an unlimited number of tiny sparks of ideas, one of which might land in your lap.

Please be open to those sparks. Tell us about them. Talk to others about them.

Consider the potential energizing and feel-good benefit of thinking outside the box - or bag - of frozen peas.

Frozen peas ease pain
. Let's make that happen in little ways and big ways.

Calgon Take Me Away: Pain - Relaxation Resources Needed

RelaxationAfter all the excitement (that's a nice word for it) of the last week concerning pain management hurdles and doctors and bone scans and who will see which patients and a getting a second surgery scheduled for June and just yesterday learning that my reconstructive guru is leaving GW for New York at the end of July - insert screaming in frustration here -  I need a break.

How about a nice Downloadable Relaxation/Guided Imagery Session?

I haven't listened to this MP3 but I'm going to right now, I need time and a way to hopefully enhance my pain medication  kicking in. It's not one of the better mornings I've had and I've yet to really do anything - but it would be nice to spend the rest of Saturday with my spouse who will then be doing a corporate retreat for a few days and I'd rather our conversation not be focused on when I last took my pain meds.

It would be nice if not all our time involved him going to appointments with me and dealing with my limitations at home. If I were he I'd need a retreat too. OK, I do need a retreat, lets face it,

In any case, for now relaxation it is - to try to enhance the 2 doses of meds I've had so far today - and this is the one I'm going to check out:

MP3 - reported to be near CD quality, downloads to computer for later listening at your convenience. From The Wellness Community

                    Voice Only (22:00, 10MB)
                    Voice With Music (22:30, 10.3MB)

If you have other suggestions that are free or low cost to everyone - or to special populations - please let us know in the comments. I'm so ready to be taken off to another place, whether it's in my mind or dragging my body along as well.

Need an MP3 player? Get one here: WinAmp (Windows)  QuickTime7

 

About My Cancer

  • Invasive Lobular Carcinoma
    My form of breast cancer is less common than others. In fact only about 6 to 8% of cases of breast cancer are the invasive form that is based in the lobules, not in the milk ducts.

    Invasive, sometimes called Infiltrating, is a scary word. In most cases this form of breast cancer has been present for 8–10 years when detected by a mammogram or physical exam.

    In my case there was clearly an area that felt thickened or dense on December 6, 2007. A mammogram the next afternoon was not able to detect it but it clearly appeared on ultrasound and was confirmed by multiple biopsies the same day.

    During those 8 to 10 years the cancer took to become apparent to me, there has been plenty of opportunity for those invasive cells to get out of the breast and spread to the rest of the body.

    It is after all, by definition, an invasive form of cancer.

    Each year about 190 thousand women are diagnosed with invasive breast cancer in the US and about 40 thousand women will die of the disease. The larger the mass is when discovered the more risk. Mine had tentacled almost 5cm into the surrounding tissue and two other areas in the breast were discovered as well.

    My chances of living another 10 years without cancer in another area are about 40%. The likelihood of one of my other underlying health conditions doing the job before that is 20%. it took a few months to get used to that idea.

    Now though my attitude is that at least I know what I'm facing. It's just not what I expected. Life changes in an instant.

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