Posts Tagged ‘bisphosphonates clinical trial’

Saturday, 10-9-10

October 9, 2010

I’m a little worried that the big hard mass I can feel in about the “11:00” position on my left chest is something…..uh, something to worry about.  Found this last thursday night.  Friday I saw Plastic Surgeon nurse, who thinks it is just a part of my ribcage.  I was relieved (sorta) that she was not as alarmed as I was.

But I don’t think it is normal bone.

And I think I’ll have to call one of the onco’s to get another opinion on Monday.  Think they work on Columbus Day?

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just for the record, cancer still sucks

March 15, 2010

and it is a big time suck, too. I’ve had three days off of work, and really thought I might be able to get “a little caught up” in the time between appointments, before appointments or after appointments.  Caught up on all the “task” kind of paperwork I need to do for work, for insurance, for home, for kids, for myself……….but no…..  I’m barely there. 

Last week I had a disatisfying appointment with my PS.  I hate it when a favorite person, in this case, my favorite doc, says things that knocks him off the pedestal I’d placed him on….   On Friday, the boobwithamindofherown had been kind of stable for a few days.  Only increasing in size by a mere 1/4″ here and there for the previous three days.  Former favorite doc suggested, “It’s your perception of what is going on” and then made a few other comments that just……seemed not right.  Hell yes it’s my perception, and I’ve had this damn implant inside of me for over 9 months, and I know her quite well.  I know how she moves, how she like to be slept on how, the movements she doesn’t like, and basically the detailed minutae of the ergonomics of this particular boob.  Know it well.  And when she increased in size, I knew that, too.  I just don’t know WHY the things have changed, and I want a better answer than I have received.  And I wanna get that answer from my favorite doc.  I really don’t want to get another opinion, or go anywhere else for more information, but apparently, I may have to do that.  Big sigh on this one………  And how many days off of work is THIS going to require?

Today 3/15/10

7:15 am.  Overslept.  Made it to Hickman Cancer Center 10 minutes late for Radiation Onco Man.  Love this guy.  Asks lots of questions.  Lots of people, including other docs ask him lots of questions.  He is interrupted in my time with him, about 5, 6, 7 times?  Love him even though he thinks doing a reconstruction is not medically necessary, so why do it?  

Immediately after Onco-Man, I hustled off to the blood suckers to have 3 vials of blood removed, and then the nurses kindly let me pick out my own spot for the transfusion, even though it would be another 20-30 minutes before my labs would be back and they would decide if I had a green light for the Zometa infusion.  I love my new nurse here.  When she tucks me in with two warmed blankies, I half expect her to kiss the top of my head and bring me warm milk and read me a story, thats how nice she is.  Instead I got some peanut butter and grahm crackers and a cup of herbal tea.  Not a bad snack while waiting for the green light for the infusion.  Eventually the labs come back, and the numbers, which I actually kind of understand now look good, so now it was just a wait for the pharmacy to mix up the Zometa cocktail just for me. 

During this wait, I realize I am the youngest person BY FAR in the entire infusion center.  Not that I like young people with cancer or big deal health problems, I just hate being the youngest one there, because my “whatthehellamIdoinghere?” demons begin to rear their ugly heads.  I begin to think I’m too young for this, when I clearly know it is an equal opportunity …..ummm….killer.  Not that it’s going to kill me or anything, at least not yet.  At least thats my plan.  Finally I get the little bag of Zometa, they throw in a free cup of chicken and rice soup, and manage to convince me to order lunch as I’ll surely be there  for that too.  I doze off a little, eat a little lunch, and become a little anxious that I’ll miss my Victory Center appointment, and I almost do, too.  Zometa is fianlly done at 12:20, and my appointment with Tom at TVC, a 15 minute drive away is at 12:30.

What a blessing The Victory Center is.  Of course I was late, but no matter….Tom is mellow, and had the right tuning forks ready, and worked his magic in the form of the sound therapy and the reiki.  Lucky me.  I am able to “drop off” the edge of normal consciousness pretty quickly now, and into a realm where time and space have different meanings.  Thank goodness.

Still had one more appointment.  Had to leave another vial of blood at the Quest lab for my standing order for the estradial levels.  This one barely dripped out.  What’s that mean?

Came back to Perrysburg, stopped by superneighbors, Faye and John, they helped me enter about 750 grades………..whew………then licketysplit just like that, it was time to go home and pick up Louie for Dog Training class, and take him where…..?  You guessed it, right back to Toledo, almost the same street I was on for the last blood draw.  Finally got home around 7:30 pm.

Busy days.  Cancer sucks.  Can’t wait for Spring Break.  Cancer better not mess up this Spring break this year, or I’ll REALLY be a pain to deal with.

big day tomorrow

October 26, 2009

Short post, I’m beat. 

Tomorrow is a big day………..I’ll find myself in yet another chemo suite, but this time to receive an infusion of Zometa the drug that I was randomized to for the Bisphosphonates trial.  This is the drug that is supposed to make my bones stronger…the idea is that IF my cancer is still lurking somewhere and has ideas of metastizing to another part of my body a little less expendable than my breasts (like my bones) this will reduce the likelihood of a recurrence.  

I had struggled with the decision to sign on to this study for weeks and weeks, and once I made my decision last August, it was  temporarily closed.  The study just opened again last week, and this Thursday was the last date I could get in.  So last Friday I completed more blood work, they decided to accept my dental work completed in September, and today more blood work.

Tomorrow, I go to the chemo area of Hickman Cancer Center at Flower Hospital, receive a relatively short infusion, supposed to be 15 minutes.  I’d be lying if I told you I wasn’t nervous.  My last experiences with infusions were lengthy and kind of dramatic with side effects.  But, this is a completely different kind of drug.  (I’m thinkin’……) 

Tried to get a half day sub, but no good ones were left, so I’ll just do another marathon.  Leave the house at 6:00 to 6:30, work until 1:50, get a friend to cover the last class, and fly to Flower for the 2:30 infusion.  Hopehopehope it doesn’t take too long because I have an appointment with the radiators at 3:30 to sear my skin some more. 

Who ever said radiation is easier than chemo lied.

more tired

October 21, 2009

So today I got to see Dr. R, Leader of the Radiators.  Did our usual, visit for a bit, then  business for a bit.  “Business” is his short list of “boring” questions which I mostly answer right, and today we ended with the skin issue.  Each time I get off the slab in the big white room of “machine C” I am noticeably a bit more….um……only one way to say it………burned.  Damn.  This is just sucking the life out of me by 12 square inches of what used to be my chest, now a sunken, scarred, wasteland.  (Remind me again why I am doing this.)  Now I noticed that it hurts to actually turn around and look behind me when backing up in my car.  And a bra…oh forget it.  Normally I would not care a bit, BUT  for the fact that I teach Junior High School.  It is kind of a job requirement.  If you want anyone to actually listen to anything you say, you need to have some semblance to normalcy….and that means a balanced frontside.  Tried putting the “puff” in a shelf bra camisole the last few days, but now, even that is UNcomfortable.  My lovely WalMart lingerie is now obsolete.  Like REALLY.  I have no idea what I am going to do tomorrow for a wardrobe in flux.

So Dr. R looked at my chest and provided me with a product that he kept emphasizing is French and called Biofine which is supposed to help the radiation burn.  Well, it’s been a few hours and so far…..no pain relief.  Still really uncomfortable.  Maybe it isn’t supposed to make you feel better.  I guess this is the payoff I get for leading a pain free life up to this point in time…….a little radiation and I am consumed by the discomfort.  That is when I am not consumed by the fatigue.  I am so sick of being so tired.  Have never experienced this in my life.  At least during the summer ‘o chemo, I had good days mixed in with the bad.  This is just one big long fatigue festival…………and it is really wearing me thin.

Bisphosphonates Newsflash

After the hospital and before complete exhaustion I got  a call from Nurse C, Clinical Study Recruiter.  I’d just been randomized!  Did I want to know which arm I received???  Well, since both have significant drawbacks I thought it didn’t matter much…..until I was told I received the IV method of delivery of the meds.  Needles don’t bother me, but I am curious how long it will take to have this infusion every month.  Will I need to take a day off each time?  Geez, I hope not.  Forgot to ask that question.  Sure hope that nasty ‘ol osteonecrosis of the jaw doesn’t enter my reality (the most severe side effect).  Yuck.  Gee maybe it does matter to me which arm of the study I receive.  Don’t hesitate to remind me that I am doing this to (potentially) prevent a metastasis of cancer to the bones….which NP Joan from U of M reminded me is far more life threatening than jawbone problems.  So, it is just another learning opportunity for me. 

Good News

Things I am thankful for:

  • colleagues who set warm coffecake on my desk before I get to work
  • and colleagues who bring me yummy lunch
  • old friends who leave sweet little notes on my car
  • great funny emails, sincere emails, “love you” emails
  • Dali Lama chanting CD that fits really well with the hum of radiation (no, really!  Even the radiators like it!)
  • Cookbooks for a cancer girl
  • a boss who cares
  • the delivery of red wine, “because it is supposed to help with radiation burn” (maybe I’m not drinking enough, I hadn’t thought of that!)
  • and the cards.  Thank you for the many cards.  Really.

 

Fatigue is real.

September 2, 2009

Yes, I know I haven’t posted in awhile and thank you for calling to see if I am OK, but it is just that the fatigue of four chemo’s is real.  When Dr. Schott said the effects of chemotherapy is culmulative, she wasn’t kidding.  Actually, she (and NP, Joan) were so right on all their predictions, that I will just believe them completely from now on.

This fourth round of chemo hasn’t been as horrible as round three was, but still, itchy hands and feet, no hair, searing hot flashes, fatigue, and bone pain.  Good news on the bone pain though, if you eat ibuprophen like candy, it is actually bearable.  I took Joan’s recommendations this time and have been downing multiple Motrins at very regular intervals, whether I have pain or not, and it is working pretty good.  No collapsing because of intense and sudden pain this time around.  Countin’ my blessings however small they may be!!

The hot flashy thing is a trip though.  Last night (for kicks) I recorded each time I was wakened when I voilently threw off the covers and dove for my water bottle.  My bedside post-it note pad has the following times recorded;

11:00pm, 12:24am, 1:53, 3:30, 4:19, 5:46,

and then a little break…7:30am

Then, all day, I only had two, maybe three hot flashes. Whats’ up with that?  Why does the body save the fireworks for the overnight hours?  So they can be seen against the night sky?  Is this some kind of sick entertainment for extraterrestials we are not aware of???  (I have chemo-brain…….I’m allowed to go off on whacky tangents.)  If the body seeks balance, this does not seem to be the way to do it. 

As if that is not enough…

I am still trying to process all that was said during the last U of M visit as well, namely the option of participating in the “Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer” Clinical Trial.  I am trying to find non-fatigued time to do some independant research on this, but the basics are: Bisphosphonates seem to strengthen the bone, and in previous studies of women who did not have chemotherapy, they provided a 30% better chance of NO  relapse of breast cancer (in the bones, a common place for relapse of BC apparently).   Sounds good, right?  But, not so fast….. there is this whole world called “risks/benefits” analysis……of course bisphosphonates as a drug/adjuvant therapy have risks, as well, and one of the risks  is osteonecrosis of the mandible, and to a lesser extent the maxilla.  (I think this means death of the jawbone.) Of course, this occurs in a small percentage of the people who take this drug, but enough that my dentist wants to talk to me about it before I sign up….so back to the tooth man next week (again).  Part of me really wants to go for this one, because a recurrance of cancer in the bones just sounds so….much worse.  Can’t really just cut ’em off like we did with the breasts.  And if my jaw bone goes south, well that’s bad I suppose, but not as bad as dying from bone cancer, right?  I really hate these life and death decisions….I’d like to go back to deciding what kind of wine to have with dinner. 

Just being able to have wine again will seem like a gift.  As soon as that mettally-mouth thing goes away, I’ll have another small blessing to count.

Tomorrow I get to meet the Radiation Oncologist, Dr. Rubin, for the first time.  I have heard wonderful things about him.  I sooo hope I like him and his recommendations.  I’ll let you know here first.

a couple of good days….

August 25, 2009

Wow-lucky me- Sunday was another good day!  Got to go to church, see all my friends…..nothing quite like going to a place where not only does everybody know your name, but they are all like really nice  big brothers and sisters and moms and dads.  Some of them are like quirky neighbors, and others are just like best friends.  Truth is, I really have only known them all for less than two years, and only know them from church*, but I know their interest and care is sincere.  Again….lucky me. 

Then on Sunday afternoon, I still felt great so I went to the Levis Commons Art Fair and got to do one of my favorite things….buy “Artist Jewlery”.  I found a sweet little set of a silver necklace and earrings created by a Michigan woman and her dad…..I tried to take a picture of them to place here, but I’m no professional photographer…the necklace says “give thanks”.  It truly represents how I mostly feel, even if you think I sound kind of “whiny” from time to time. 

Today……well, today was a whopper of a day!  I was up in the middle of the night with an anxious and sleepless child (school anxieties) so I can’t believe how much I accomplished with the help of my friends.  Especially MarvelousMarilyn (MM).  Let me tell you about MM.  She has volunteered herself as my monday morning helper around the house, which mostly means “maid work in the kitchen”.  But MM has really been a great inspiration for me, has kept my spirits up when I have been dragging, vigorously wiped down my kitchen counters (still kind of difficult for me to do), helped clean out a neglected refrigerator, vacuumed, vacuumed, vacuumed Yellow Lab Dog Hair, folded laundry, talked to boys, etc. etc. etc.  Today MM helped me clean up the “student center” in the house which is where all the kids school work, legos, and miscellaneous crap lands, and where their beloved computers reside.  Well, this area has been a DISASTER for….months, and I have been feeling bad about that.  Not a good enough housekeeper to even get the kids school work from LAST SCHOOL YEAR saved or filed away or thrown out or whatever you are supposed to do with the volumes of paper two kids bring home from elementary school.  Well, today MM helped me in A BIG WAY get it pretty much whipped into shape, and looking good.  Still a bit to do yet, but I feel like I can get the rest of it now.  Even if I had done nothing else today, it would have been a great day because of this accomplishment.  Thanks Marilyn, you are a marvelous friend and like a mom I wish I had.

THEN, after lunch, I took the boys to their new daily afterschool childcare, to get to know the family, the toys, the other kids, etc. while I had a couple of appointments.  I am keeping my fingers crossed that it works out for all involved.  Like..all of my fingers crossed and toes crossed, too, because right now, I don’t have a back-up plan for afterschool child care, and even though I’m not back at work yet, I will be soon (I hope) and will desparately need the assistance then.  So far, the boys have said it was “OK” which is a good sign.

SUPER LUCKY ME, had an appointment at The Victory Center** with Tom.  I’ll tell you, we are so lucky here in NW Ohio to have TVC and receive the benefits of the adjuvant therapies offered.  You know things are good when you begin to feel better just walking into a therapist’s room.  Tom practices Reiki and Sound Therapy and it is the best I feel all week when I am in his care.  It is so difficult to explain, but for me, it provides such a deep sense of peace and relaxation which permits your mind and body to just experience the flow of energy on a completely pure level.  You must be willling to release conscious thought to truly receive the benefits.  Again, I can only say what it gives me, but it is a colorful, relaxing, yet at the same time energetic experience.  And no two sessions are exactly alike.  And I always feel just great when I am done.  Thanks Tom, I love the work you do.

AND AS IF THAT WASN’T ENOUGH, MY NEXT APPOINTMENT WAS WITH THE DENTIST!  Now you might think I am being kind of sarcastic here, but nooooo, I actually like going to the dentist.  First of all, at MY dentist’s office, everyone is really nice and the hygenists never scold you for not flossing well enough.  Secondly, they have really nice chairs.  Thirdly, Dr. Urbanik is friendly, sincere, and has really small hands.  Or at least I think he does.  I never actually look at his hands when I can see them, but I am always impressed that when he has his hands in my mouth he doesn’t make me gag.  The last time I was there was just days before my cancer trip began, so I filled them in on my busy Spring and Summer.  Did you know that one of the potential side effects of chemotherapy is open sores in the mucous membranes of your mouth?  Again, lucky for me, I havn’t had that problem.  Dr. U was impressed, said nice things about my mouth.  While there I mentioned that I might be participating in a clinical trial at U of M, the Bisphosphinate Study and might need his office to send dental records.  He surprised me by mentioning we need to talk about that further, and perhaps even complete a more in depth examination.  He briefly explained how  the mandible (and to a lesser extent the maxilla) process bone, and how the drug in this trial will move through bone, especially the jaw bones which then brings up a concern for the future integrity of those bones.  Hmmmnnnn.  Great that my Dentist actually knows about the study I am talking about, now I have another thing to research a bit further.  In my spare time.  I really am grateful to have a smart tooth guy like Dr. U.

OF COURSE MY DAY WASN’T OVER YET, after I picked up the kids at the new place, went home, made dinner for them, and then directed the boys to write their names on the school supplies that BFF Heather took the time to buy for us.  That means about a million things needed names written on them.  Well, we only had time after dinner to put names on half a million things and jump into the superminivan and dash off to Open House at the boys school.  Charlie had asked me to wear one of the newly borrowed wigs to the school so I didn’t embarrass him, so halfway out the driveway I remembered, drove back in, grabbed the hair and off we went!  (BTW Heather, I’m giving you another BIG HUG for that incredibly thoughtful act……to save me the hassle of pulling together all the school stuff!!)

OPEN HOUSE WENT WELL, boys behaved, even the incredibly anxious child, they were nice to their teachers, nice to each other, found their desks, put away their stuff, nobody got mad, nobody whined, nobody yelled.  Not even me.  So, it was a resounding success!  And school starts in ohhhh about 32 and a half hours.  But who’s counting?

THE REWARD FOR A GOOD VISIT TO SCHOOL was a stop to see Bill’s chickens before we went home.  The kids had fun feeding them yummy weeds, and chicken delicacies, beetles and worms.  I got to help pick tomatoes and drink a beer.  The weather was perfect.  The sky was beautiful.

Arrived home late, Lou went out for Chinese food, so thankfully I didn’t have to make dinner.  We all ate together like a family should…again with no whining and no yelling.

An incredibly productive positive day.  Lucky lucky me!  Can’t wait for tomorrow! 

 

 

*Maumee Valley United Univeralist Church website is: http://mvuuc.org/  check out the calendar…if it sounds like something you are interested in, please come.  Anyone of any faith is welcome!

**I know I have mentioned this before, but it is worth mentioning again…if you know anyone diagnosed with cancer in NW Ohio, you must refer them to The Victory Center.  All services are free for cancer patients.  This organization is worthy of your support…..your passing their information along and/or passing a check their way.  Check them out:  http://www.thevictorycenter.org/