Time to spill my guts . . .

BeachBabe and ReneP have asked for my story, but I was in a bad mood about it and really didn't want to write. A reply from TellMeWhy really touched my heart and I decided to spill. Here goes,

I originally was diagnosed with Stage 2 aggressive invasive breast cancer in 1997. Lumpectomy, chemo, radiation, Tamoxifen - the whole 9 yards I went for 10 years with NED.

In April of 2007, I had been feeling like crap for awhile (achy and tired), went to the Dr., had tests and found that it had metastisized to my bones. It's widespread - all over my skeletal system, with a concentration in my ribs and hips. I started on Femara and Zometa immediately. These two things held me stable until last week (you realize that's TWO WHOLE YEARS!!) My doc. called that Plan A and she says she has hundreds of plans.

Now we're on Plan B which replaces Femara with Fasoladex shots once a month when I get my Zometa infusion. Good news is that Fasoladex deals with the estrogen in a different way. Doesn't shut it down, so my thin hair and dry private parts may just perk up!! Woo Hoo!

Like everyone else, I wanted Zometa to go away and take my oncologist (she rides a BROOM!) - along with the disease, but insulin doesn't go away for diabetics. so we buck up and suck up!! Recently, Zometa has proven to help prevent new tumors instead of just fixing holes left by the old tumors. I got a Bard Power Port last year. Hated it for awhile, but like it now. Since Zometa will be lifelong, and I have one good arm because of lymphnode dissection, we decided to save my veins for scans and other stuff.

I dread it every time I go and can thoroughly relate to the reply on the blog about wanting to throwing up. I WILL tell you that after 2 years of this routine, I am settling into a sense of normalcy. It doesn't take everyone this long, but I lost my mom last year to a sudden heart attack in the midst of the mahem and that hasn't helped. My husband and I are taking care of my dad and both his parents. They are in facilities, but we are the 'go to guys' who get all the midnight phone calls etc. that go along with taking care of parents.

My pain routine is 75 mg. diclofenac (big gun anti-inflammatory) twice a day. If I have breakthrough pain (I call this 'jumping the meds') I throw rapid release extra-strength tylenol on top of it - kind of a cocktail. My doc knows and approves. I have Vicodin for emergencies (which usually occur at night), but I've had a bottle of 100 since Feb. 2008 and still have 25 left. I do NOT - repeat - do NOT want to take narcotics. I want a life!! People who act like House and can't poop don't have lives - not for me!! No!
I use a heated mattress pad year round on my bed. It comforts me! I take ativan at night so I don't wake up screaming.

So there you have it!! My story in a nutshell.

Yesterday, I had a very long talk with my nurse practitioner (I like her better than Dr. Broom Rider) She gave a me a very good book called "100 Questions & Answers About Advanced and Metastatic Breast Cancer." I wondered why she hadn't given it to me sooner until I opened the book and found out it was just published!! I also bought a book called "Praying Through Cancer" which someone on the blog contributed in. It's a wonderful book. Would make a great gift for someone who is getting their first 'bad news'.

I love you girls and look forward to hearing your stories. Oh, and it's not as painful to spill as I thought it would be. I actually feel much better!!

By yogamom
Posted April 10, 2009 at 12:36 am
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Hi Margaret, I was searching thru this website and I saw your post and I just wanted to wish you the best; I am coming up on my ten-year "NED" anniversary and I am so grateful to be here to celebrate and I guess that's how I have to look at it; in 1999, I was diagnosed with advanced local breast cancer and I went through a clinical trial, given the "big guns", the whole nine yards....and I was hoping to breathe easy at the ten-year mark, but I guess I will need to be forever vigilant...

By Beachbabe
Posted April 10, 2009 at 9:55 am
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Thank you for taking the time and the pain to share the 'whole story'. I often tell people that for me, when asked to relate the whole story, it's like picking a scab off that has just started to heal...painful and the darn thing is never going to heal if I can't leave it alone for a while!

Where can I get a copy of both things you mention? I'll try my faithful Amazon...

Let's face it, the shopping cart we got in life sucks...it's got a shakey wheel, some of the sprungs are missing and stuff keeps falling out, and it's bent and often doesn't go where we steer it. But, for now, it's the only shopping cart we've got and we've gotta do our best to live with it and repair it using the supplies we've got.

We are all different, but from my personal experience I would say: don't be so afraid of pain relievers. I used Vicodin alone for two years (2-3/day) and was never House-like. Was never out of pain, either. So, they switched me to morphine (MORPHINE!!!!!) 3x/day and Vicodin for break through...and I am much better. And I am still ME...totally quirky and functioning. I'm more tired than I used to be...but I'm still functioning!

I often 'feel better' after spilling about my plight which is why I send out a weekly 'newsletter' to friends, Romans, and countrymen...since you felt better, perhaps you accidentally came upon an outlet that would be therapeutic for you...writing! I prefer the computer method, so some friends have gotten mucho out of a pen and a beautiful journal.

We are all here for you and we are all hear for you~

Colleen

By jaf
Posted April 10, 2009 at 10:43 am
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Margatet27217

Thanks for sharing your story. You are not alone, unfortunately, there are too many of us. Like Beachbabe said it does feel better sometimes to spill your guts. I know when people ask me how I am doing it makes me feel that they care. I will definitely check out the books you mentioned.

I am there for you.....

By GirliebikerTPBC
Posted April 10, 2009 at 10:53 am
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I agree with Beachbabe - don't be afraid of the narcotics! Your body will adjust. I take 10 mg of oxycontin every 12 hrs (controlled release) and use 5 mg of oxycodone for any breakthrough pain. I do not look or act like "House." I can drive and do anything else I want. To prevent constipation, I take 2 capsules of Colace everyday and it's been working for over a year now. Another thing I recommend for those with bone mets and taking Zometa, try a Tempurpedic mattress. I can lie in one spot for hours and not feel any discomfort.

Please take care of yourself......we all care.

By kleighk
Posted April 10, 2009 at 12:31 pm
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I have been using a tempurpedic mattress for 4 years and Girliebiker is right, you can lay for hours in one spot and not get sore!! When I do have trouble sleeping, it's not because of the pain anymore---I just can't sleep. Sometimes the narcotics can keep you awake (I know, that sounds stupid, since it makes us drowsy,but it's true) so I just lay there comfortably until I fall asleep. I am also on a Fentanyl patch, morphine, hydrocodon, and ibuprofen and I function fairly well. At least I don't act like House!?!? And the constipation is managable...more so than the pain!!

Just my two cents....Karyn

By barb366
Posted April 10, 2009 at 1:28 pm
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I have learned much. Thank for sharing. The onc on the broom cracked me up!! If people are happy with where they go can you add that bc I'm shopping.

I also learned House can't poop. That's a lot of info...don't watch it, but explains his facial expression on commercials.

By mom2acat
Posted April 10, 2009 at 1:58 pm
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Thank you for sharing your story.
Yours is similiar to mine in a few way.
My original dx was stage 2, in May 2003. Had a bilateral mastectomy, followed by chemo, radiation, then Tamoxifen. After about a year on Tamoxifen was switched to Arimidex.

In April 2007, I found out I had bone mets. I am also on Zometa and Faslodex. So far, my mets have remained stable. I also have a Bard port.

Most of my mets are in my hip. Most of the pain I am having now is from scar tissue on my femoral nerve from radiation.

By nancyc
Posted April 11, 2009 at 10:23 am
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I recently had my first appointment with my new onc....my first doctor here in NC, where I moved a year ago. I brought over my voluminous chart, CT scan CD's, filled out a 2 pg front/back questionnaire, and decided that I would e-mail my history to him rather than try to tell it in person. As I explained to him, it saved time and kleenex. He told me that it was very helpful to him.
One of the WORST times that I had in my horrible year of '04 (4 surgeries, major complications, depression) was when a social worker called and wanted my history. I was so terribly traumatized by re-living all that I had gone through in the preceding months, that it sent me into a full blown panic attack and depressive spiral that lasted nearly a week, and only lifted when my brother, his wife and her 15 yr old twins came up for Christmas, and I got to spend time with them. I think that we can get some distance from the awful things that we go through, but you're right Colleen, telling it all again is like pulling a scab off. It is a bit easier though, when talking with others who know first hand how difficult this all is, and we can get strength and insight from one anothers' stories.

By CSF
Posted April 16, 2009 at 7:58 pm
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Thanks for sharing this. I know it's hard to go over the whole painful story.
I will chime in with a couple of others here - don't be too afraid of the narcotic pain relievers. I have been doing the exact same routine as Girlibiker with the same great results for well over 5 years now. No increase in dose, no doped out feeling. I drive, I work. I live alone and take care of myself.
I have a life - I function well for the most part. I would not be able to do this with the pain I have. I resisted narcotics at first for similar reasons as you, but I wish I hadn't. I lost some good time due to being in pain.
I have a Tempupedic bed which I bought after I sold my house (medical bills forced that sale, and I needed SOME reward for it!!). That bed helps SOOOOO much!! If I lose everything, I will fight to the death to keep that bed. My onc gave me an Rx for it, so I didn't have to pay sales tax.
If what you are doing works, then by all means continue. But I do have to say that narcotics when taken properly are a GOD SEND!!
Also, I'm curious why you will be on Zometa for life... I was only on it for 2.5 yrs, every 3 weeks. My onc took me off of it after that time due to potential long-term side effects. My bone mets are all still stable with no new lesions, and it's been 3 yrs since my last infusion. It stays in your system for up to 10 years, and keeps on working. And yes, recent research has shown Zometa may be effective in preventing tumor growth in places OTHER than bone!! Amazing stuff.
:)

By kleighk
Posted April 17, 2009 at 1:00 pm
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CSF, what are you taking now since you came off Zometa? I've been on Zometa for 5 years and I have had no side effects. What other SE do you know of besides the jaw thing? I hate to admit it, but I don't usually worry about what the side effects are unless they start bothering me. I'm also on Faslodex.

By CSF
Posted April 17, 2009 at 3:48 pm
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Zometa can be a little hard on the kidneys. And of course there are the potential jaw problems.
I sent you a message regarding my pain meds regimen - but my computer is acting weird, so if you didn't get it, write again and I will re-send.
If you are not having problems with your current regimen, then I guess there's no reason to change it. But it can't hurt to know what options are out there, even if they aren't needed at this time.
I personally have tried to be as conservative as possible with my treatment - I know it's going to be a long haul, so want to err on the safe side so I don't have as many long-term complication risks to worry about.
We are all very different though, so whatever works for you is what you should do!
:)

By lusianagal
Posted April 17, 2009 at 7:53 pm
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wow, what a story!! We are much the same in that way. I was dx in 99, invasive stage 2. Chemo, double mast. reconstructive surgery, the whole gamut. 8 yrs later i broke three ribs by accident at the chiropractor and we found the mets then. Its been two years. I started with zometa, avastin and arimadex. I got one new lesion on my sternum and was dropped from the clinical trials. We then went to avastin/taxol. Bald again, lost fingernails and toenails. After 9 mos of that he let me take a break on some oral hormone treatment and 4 mos later, boom, pet scan lit up and i had a spot on the liver that wasnt there before. Sooo, now i am back on chemo, this time taxotere and cytoxan. The first round was so strong that my numbers bottomed out and i wound up with stage four mouth ulcers and was in the hospital for a week. Watch out for the zometa, i cant take it anymore, i got necrosis of the jaw from it. I has been as miserable as the cancer. I had to have a large portion of my lower jaw bone removed a few weeks ago. thank goodness there were no teeth there anyway it was way in the back where your wisdom teeth would be. So now i am bald for the THIRD TIME. My new motto is AIR OR HAIR? ILL TAKE AIR. I have some pretty good pain from chemo. I refuse to take pain meds b/c they depress me. So its aleve or tylenol for me. Although i will say when i was in the hospital the pain meds through IV did feel pretty good. :) I just cant live on them.

By chloemom
Posted April 18, 2009 at 6:31 am
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OMG Lusianagal! What you have been through! Next time I feel a pity party coming on I'm going to think of you brave people and snap right out of it! Whoever says that bone mets is the "good" mets must be out of their minds ... when I read what you guys go through with it, I'm grateful to have "only" liver mets!

I hope you find a pain reliever that works and doesn't make you feel altered or depressed. Lots of tylenol aren't good for our livers, of course most of the stuff we take isn't either is it! I know I have differing reactions to different pain meds and I'm so glad to have found one that I don't even really feel any difference with. I hope you are able to find one that works for you this way too.
Hope you are feeling better now that you've had a few days in the comfort of your home. Sending you warm cyber hugs this morning!

By lusianagal
Posted April 18, 2009 at 10:46 am
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chloemom, thanks lots. Ive really never had pain with the bone mets, my pain was from the jaw necrosis and the pain pills just depressed me terribly. I live in louisiana and during hurricane gustav i was so depressed while my family was running around getting ready i was sitting in a chair and couldnt have really cared one way or antother, all while trying to teach jr. high... ive since retired

By maryk58
Posted October 15, 2009 at 1:30 pm
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I ordered both of the books mentioned above on Amazon.com last night. They both look fantastic; thank you so much for recommending them! Of course it came to 67 cents less than the "$25 free shipping" so then I had to find an inexpensive baby story book ($2). Someday I will hit exactly $25.01!

Welcome to Inspire!

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