Posted on 11/11/2010 1:23:03 PM PST by janereinheimer
Just an update on my meeting with the oncologist on Nov. 12:
Quint and I met with the oncologist on Friday. Got lots of information as far as my specific situation. Tissue samples were Fed Exed out to California on Friday for a test alled “Oncotype DX Assay.”
It’s a test that examines the cancerous tissue at the molecular level . It’s called a multigene expression test and will predict whether or not chemotherapy will be beneficial for me or not. It will also predict the likelihood of a recurrence of breast cancer.
It’s intended for use for women who ae early-age (either stage I or II), node-negative, estrogen receptor-positive.
So far the test has been used in 14 clinical trials involving 4,000 cancer patients worldwide.
Results have been published in The New England Journal of Medicine and a chemothrapy benefit study was published in the Journal of Clinical Oncology.
I had a full sheet of questions that I had been collecting for about ten days and Dr.Floyd went over the questions one by one. Fortunately for me, Quint was also in the room. So what I didn’t understand about the chemistry, he captured for me.
I also learned that I am a stage 1.
I guess God still has work for me to do down here. It’s His
clock we are all on anyway.
And for those who are interested in a great piece of music, check this out: http://www.creativeminorityreport.com/2010/11/awesome-pop-up-hallelujah-chorus-at.html
I think this is what heaven will sound like. It brought a tear to my eye to think that a composer (Handel) could capture such joy in a musical expression. It’s a wonderful, 5-minute respite from all those thoughts about cancer. Surely, healing comes from such beautiful places in our hearts and minds when we join beauty with healing.
God’s richest blessings to all of you and thank you so much for your prayers. Please know that I have you in my prayers too.
— Jane
Jane:
Thank you for the inspirational piece of music. I wish they would play that in every mall in the country!
You can make it through this, Jane. I was Stage #3 but after a rough year I am looking forward to better health in 2011. God is merciful, that is for sure and you are on the road to your treatment and recovery. Keep asking questions of your doctor as you are doing and keeping an optimistic attitude are the key.
Keep negative thoughts and negative people at arm’s length - there are so many folks out there who WILL be supportive - some you haven’t met yet!
In addition, by starting this thread you are helping many, many women who are facing their fears and will post here for encouragement.
Bless you!
Bunches
PET scans don’t bother me as far as claustrophobia, it’s the noise!! All this whooshing, roaring, humming, buzzing going on just inches from you all around kinda freaked me out. The techs gave me a choice of music to listen to, but that couldn’t drown out the noise most times. And it took so long!
Our hospital is now strictly enforcing a policy that any woman 55 years (!!) or younger MUST have a pregnancy blood test before any radiation is administered for scans!! Aye Curumba! That now adds an additional hour or so to the overall test time. Crazy. Kinda p*ssed me off. Told the tech that there was NO WAY IN H*LL I could be pregnant, that it’s been so long for me that I didn’t think I knew how to do it any more! LOL
It was all in vain, still had to do the test. Guess what?
I wasn’t pregnant!
Got my hair cut Friday evening. It was just a half inch TOO SHORT to donate to Locks of Love! I burst into tears. I had so wanted something good to come of this. I was totally ok with getting my head shorn until then. I cried thru the whole deal. My stylist left a little on top. And she didn’t charge me, what a sweety. She knew what was going on, her mom had just been thru it, too. She’s fine now.
Afterwards my always smartypants daughter said: “Wow Mom, your roots are really showing now!”
; )
Here’s a link for the beret pattern we’ll be using:
http://www.nancysnotions.com/text/content/pages/GailsCKBeret.html
Super easy! My daughter and I are gonna make a couple for us and to get a feel for construction, then we’ll get busy making about a dozen pink ones.
Thank you, bunches.
I thought the music would find a home in a lot of people’s hearts. Who could not warm to the Handel’s Messiah?
It sounds like the group or groups like it will be going around the country in the next year or so with their 1,000 random acts of culture.
Don’t know if they’ll make it to small towns though.
Shucky Darn!
If I hear of any others, I’ll post them for all of us to be soothed.
Dear Jilly —
Sorry your hair wasn’t long enough. A half inch doesn’t seem to be that much of a difference. You’d think a long shock of hair would still be okay.
Glad you got through it anyhow there, lady.
What a wonderful thing to do. And how kind you are to be thinking of others at a time like this.
You go, girl.
— Jane
The Locks of Love thing, I reckon they have to strictly enforce the rule or else too many exceptions would be made and then they’d be stuck with a gob of hair they couldn’t really use. I do know an inkling about basic wig making and with a length of about 10 inches, it’ll make for a rather short hair wig, boy-ish like. I don’t begrudge them. It was just sad that I couldn’t be of help to another.
Now, on to an update: I had my “nadir” visit yesterday (a check mid-way thru your 1st chemo, to see how well you are tolerating it.) And WOOHOO! The chemo has knocked that Tick down by 2.5 cm.! The nurse was thrilled, as was I. She said it was normal to get a big reduction with the 1st dose, but she added that mine was exceptional.
I also found out why in the 1st 3 or so days following chemo I felt so hyper. It’s one of the anti-emetics they gave me in the iv with the chemo. One of the side effects in some gals is a feeling of elation, or hyperness. I’ll feel like that probably every time. LOL! That’s good to know. I’ll have to make good use of that time!
My platelets were down-to be expected- and my white cells were up a dab, so I’m trying to fight some little cootie right now, probably some bug the girls dragged home from school. My blood work was looking typical for some one just starting chemo. They hinted that they might put me on Neulasta, to help the platelets. One side effect of that is severe bone pain. Oh great.
It was such a good day in the big city for me. Good news about the tumor, got the trivia question of the day right at a deli where we stopped for lunch and won a nice fresh big cookie (white choc. and macadamia nut!) saw a rainbow on the way home and then was treated to a gorgeous sunset!
Yep, God’s good, y’all!
Jane:
I still have gobs of my old red hair from when it was coming out during chemo treatments. I don’t know why I saved it but I may give a lock of it to my hairdresser to better match what color I want her to dye my hair. My doctor had given me the OK recently to dye my hair again - it had grown in greyish white and I didn’t care for that color. So I had it colored red recently but it came out a little too light.
I am so happy your tumor was shrunk from the chemo and that your blood work is coming back ok, except for the platelets.
I was on Neulasta from Jan to May of this year. I had a shot of it every three weeks after my 3 chemo drugs and I did ok with it. There is some discomfort but don’t let it scare you.
You are in a fight against cancer and any pain or discomfort is worth it to knock out that opponent. You can do it - you have a great attitude!
I found that everyone’s reaction to different drugs or treatments varies and yours may be less of a bad reaction to a Neulasta shot for instance than the person sitting next to you in the chemo room. Before I started my radiation, one lady told me I would get blackened burns from the radiation because she did. I only got an uncomfortable area under the arm due to the radiation but I did fine otherwise.
Sometimes I think I reinforced my own positive attitude in defiance of those who said I would be sicker than I was. I showed ‘em!’
I am headed to the ocean tomorrow for vacation to thank God for my recovery amidst some of the beauty he has created.
Take care.
Bunches
Thanx, bunches.
You enjoy your time at the beach! (I so miss the ocean. California, as a state I could give 2 hoots in a handbag for, but I did so love swimming in the ocean there when I was a kid!)
You have a blast, girly...you’ve earned it!
Hey Jilly:
Congratulations! Sounds like somethings going right for you.
That tumor reduction is awesome. Hope it’s the beginning of more good news.
Since I might be having chemo in my future, can you tell me what to expect. I realize that chemos are different, depending on what and how much.
But I also know it’s not like swallowing cough syrup for a cold.
Anything you can do to shed light on it would be most appreciated.
Did you have to go into the hospital?
Did you have to have a port installed?
How long does a “session” take?
What does it mean if I have to have 6-8 sessions?
Anything you can do to let me know would be most appreciated. That is, when you feel like it and when you have time.
Much good wishes and prayers,
Jane
I can only speak of my experience so far, I’m still a chemo noob.
: )
Our cancer center has what they call the “infusion room”. It’s where you get “infused” with your chemo. If your hospital is big enough to have a cancer center, then they’ll have an “infusion room”, too. When you get your results from California back and see your onc. afterwards they’ll probably give you the tour, so you’ll know where to go when it’s chemo-time. More than likely you’ll come in an hour before your appt. so they can draw blood work. They’ll do that every time!
From start to finish (including blood draw time) my chemo takes about 4 hours. You’ll meet with your onc.’s nurse, she’ll do an exam (Yes, yet another exam! It never ends!) and then it’s off to the infusion room.
Hopefully, the hospital has wi-fi. Ask and then bring your laptop, if you have one, to your chemos, then you can FReep while you get “infused”, LOL! That’s what I do. ; )
If not, bring a good book, or knitting. You’re gonna be stuck in one spot for at least 2 hours, maybe longer. Some folks just nap during chemo. Our center has TV rooms, which have several small TV’s mounted from the ceiling all around and quiet rooms that are TV free. I used the TV room first, I’m going with the quiet rooms next time. The tv room was too chaotic for me, noisy etc.
My chemo is slated for 6 sessions, (or doses) every 3 weeks. So roughly about 6 months of treatment. This seems to be the standard for my kind of breast cancer. Some gals may get more frequent chemo. It all depends.
Yes, you’ll need to get a port put in. It’s a handy contraption implanted just under the skin near your collarbone. Same day surgery for that. It’s a very quick procedure. (I showed up at 7 am, by 8:30 I was in surgery, by 9:30 I was back in my room and totally conscious, out the door by 11 am!) You will have a little 1 to 1 and half inch horizontal scar on your chest for the rest of your life. It’s the badge of honor. ; )
Ports are preferred because it makes IV’s so much easier and is less stressful on your veins. They literally just plug you in to the I.V.! I just knew it would hurt, I hate needles, but much to my surprize it was just a slight pushing sensation on the port and then *bingo* I was ready to go! Never felt the needle! Whew! The port is not removed usually until you’re a year past treatment...just in case.
It’ll be sore for a while and feel really weird, but after a month or so you hardly notice it. Beware of shoulder straps on seat belts!!! You’ll have to sling ‘em down under your arm. The strap hits right on your port incision no matter if you’re driving or in the passenger side. If you were to as so much get in a fender bender and that strap presses against that spot hard and suddenly, it could be dangerous to you. It could dislodge it or worse, so be careful. My docs didn’t tell me that. I have a good friend who is an 8 yr. survivor who is mentoring me, so to speak, thru this and she told me that.
In our infusion room the nurses are all over, seems to be a high patient/nurse ratio. They’re constantly on the go-checking IV’s, getting new ones started and they also do “stewardess duty” LOL, Frequently they’ll come by with the snack cart-filled with cookies, crackers, juices and sodas-so you can have something to nibble on or drink. It kinda reminds me of the snack service on a plane. : )
That’s another thing...stay hydrated!! Drink alot of water while getting chemo. Bring your own sippy cup or bottle if you like. The goal is to have to go potty either during or shortly after chemo. You don’t want this poison in your kidneys for long. At one point during my chemo they gave me a chemical that within seconds gave me the most horrible taste in my mouth! it was transient, only lasted a minute or two. To me it reminded me of Ambesol, the toothache medicine. It had a strange anesthetic taste. Anyway,drink plenty of water in the days following, too. The chemo is very drying to all your cells. Oh, here’s another weird fact: In the days after chemo you will be instructed to flush twice after you go potty! You’re a genuine bio-hazard for a few days afterwards,( or at least your urine is!) how about that? By day 3 you can stop the double flush nonsense.
Not to be crude, but you will either get constipated or the opposite by day 4-ish. Have some OTC meds on hand for either scenario.
They give you plenty of anti-emetics before, during and after chemo. I never had any problem with nausea. Take your anti-puke pills as prescribed, even if you don’t feel queasy. Stay on your dosage schedule and you should have no problem, too. I was shocked at how easy this was so far! I had maybe 2.5 really bad days, where I was so weak I could barely walk and just felt like crap...like a real bad flu. And those days hit early, like about day 4 or so. After that I just got stronger and stronger until now, a week away from dose 2, I feel I daresay even better than before chemo! Weird, huh? I suspect the next dose may hit me harder, however.
Your sense of smell and taste will begin to change. Odors that didn’t bother you before will become enhanced or altered. In my case so far, it’s microwave popcorn-my girls did a batch one evening and I had to go outside, it smelled so bad to me! So keep that in mind when you go for your chemo-don’t wear any cologne or perfume out of respect for the others there.
I used to be a huge coffee hound, but by the end of the 1st week I had lost all desire for coffee, took a few sips and that’s was it. Now I can have a couple of cups in the morning, but that’s all. So be ready for changes...and they may surprize you-it won’t be what you thought or expected!
Again, this is only my experience so far...your mileage may vary. : )
Right now I’m at day 15, post chemo, and my hair is starting to fall out. I’m imagine by the weekend it’ll be real dramatic, right now it’s just little bits.
And you do lose hair... EVERWHERE. Yikes! :^O
Thanks, Jilly
This is very helpful. I think it’s important to get as much vagueness out of the equation as is humanly possible. And it’s a great “anxiety reducer” to know what to expect.
You are so helpful and I’m sure that the others who come to this web site agree.
And that doesn’t even count the many lurkers who are reading too.
— Jane
Note to all:
If any of you have any behavioral or mental health questions — about anything — please post it or send me a private email and I’ll respond.
I do know that one of the early considerations re mastectomies is grief. That may surprise you but we grieve anything and everything we lose, including parts of our bodies.
And anything that forces us to make an adjustment is how we define stress.
Actually, I think this thread is a good place to dump a lot of that stuff because I do believe there is so much compassion floating all through these messages.
— Jane
Note to all:
I am horrified to read that a flight attendant — a cancer survivor — had to remove her prosthesis in the “pat down” phase of boarding a plane.
Have any of you heard any more horror stories?
And those ugly ugly ex-ray machines that show way too much detail! How horrifying would that be for women who have had mastectomies!
And I don’t even want to get into the politics of why women in burkas are exempt from the body pat-down, but nuns aren’t.
Grrrrrr
— Jane
Yeah, no kidding! But you will experience information overload-there’s a lot to learn in a short time. Your whole lifestyle is about to change.
Our cancer center had a one on one chemo orientation for me shortly before I started. Hopefully yours does the same. That’s the best time to get all your questions answered and be sure to include hubby in this. You meet with an onocology nurse who will go over the whole process and that’s when you might get the tour, too. You might watch a short dvd about all the do’s and don’ts of chemo. The nurse really took the time and made sure I had a full understanding of what would be going on.
Even if it’s just the 3 of us- you, bunches and me- there’ll be some useful info posted here. All 3 of us are in different stages of treatment, so we all have a different perspective.
You’re about to begin chemo, I’m running about a month or so ahead of you and bunches is in that enviable spot of being there/done that. That’s where we want to be!
I’m honored to share your journey with you thru this thread.
: )
Thank you, and thanks also to Bunches!
I got a letter back from the lab in San Francisco. They’re working on my tumor tissue now. They run the tests three different times.
I may have mentioned it’s the Oncogene Dx Assay. Checks 21 different genes and based on the test results, will provide a blueprint as to what will work best for my genetic makeup.
It’s a test that’s for early stage cancer, positive estrogen receptors on the cancer cells, and cancer free lymph nodes.
At this stage, I’m ready for anything. Thanks in large part to both of you. Just knowing you’ll be walking with me means oh so much.
Thanks to you both.
I have to tell you that when you see “quintr” on this post, it’s really me using my husband’s laptop. Too lazy to go upstairs to my office where my laptop is. I should sign my name, though, just to avoid confusion.
LOL! Thanx for letting me know.
Did you see this?
http://www.freerepublic.com/focus/f-bloggers/2632133/posts
I guess it’s different than thermoablasion, but sounds similar.
Going in for the second dose tomorrow.
You guys have a wonderful Thanksgiving. Even with all the turmoil going on here and abroad we all do still have so much to be grateful for!
Hey Jilly:
This is absolutely amazing. Glad to see researchers thinking way outside to get at these cancers.
Good luck with your second dose tomorrow. My prayers are with you.
I go to oncologist on Monday for findings back from my oncogene test in California. And we’ll probably plot out strategies at that time.
And yes, I agree with you — we have much to be thankful for despite all the mucky yuk that’s going on around the world.
Take care, kiddo, and please keep me posted.
Jane
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