Taxotere, Carboplatin and Herceptin
Comments
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Amy - I have never heard of that...WOW. I am able to go online and check the status of my claims. My herceptin is billed at $10,000 for the first treatment and my 2nd treatment was around $7.000.
Great news about the mammo being clear!
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Amy: I also have Blue Cross and they would not let me have treatments in the doctors office but I have to go to the hospital for all treatments. They cover it there for me and my Herceptin runs around $7000 and chemo cost me $16,500 per treatment (which is done now, yeah!!). I didn't understand the difference in getting it done at the doctors office but didn't want to argue it if they would cover it at the hospital...as long as it was covered and paid for!!
Since I am done with chemo and my hair is slowly growing back....is there anyone who is just starting treatment that would enjoy some scarves that I had used! I had some made for me (I didn't use a wig, just scarves) and they are large 36" by 36" squares. If someone can use some PM me and I would be happy to send out what the few I have to you at no cost. Just want to help someone else on this road!
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Amy -- what a mess for you today. Sounds like the hospital is the way to go for treatment. I have Premera Blue Cross and haven't had any trouble, but I haven't started my chemo or Herceptin treatments yet.
Writer -- I am on the February chemo list, but just got the date for my port installation (still feels Borg-like to me) and that won't be until February 25. Yargghh. I wanted to get a move on cuz I wanted at least some semblance of hair by my birthday in September. Oh well. Sounds like I'll be moving to the March chemo group.
Our family tradition is to watch Groundhog Day (the movie) on Feb 2 (cheaper celebration than Valentine's Day). Here's hoping we won't have to relive this experience!
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Amy, I am so sorry that you are going through all of this. I do not have Blue Cross, but I hope you can get this mess squared away soon. I had a mammogram yesterday and I wasn't nicked at the port, but all around my port has been sore since.
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Amy - talk about a good news/bad news day! I sent you a PM to see if I can help you get in touch with someone from Blue Cross.
Cheers!
Cloud
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Jars of Clay
January was a tough month for me. A lot happened, good, bad, and in-between.
I worked really hard to not feel sorry for myself over the whole NotGonnaEverHaveYourOwnKids issue. I think I'm doing ok.
I MOVED!!! I decided that I wanted to start this year in new space, a new environment. My old apartment was lovely, really, but it was up 3 steep flights of stairs (how I managed those during chemo is nothing short of a miracle), and it didn't have a washer/dryer. It was time for me to upgrade a bit and get a place that had the majority of amenities I needed to be comfortable and productive in my personal life.
My new place is absolutely gorgeous! Big, spacious, impeccably appointed by my buddy (and new landlord), AND up only ONE flight of steps and WITH a washer/dryer (and even a dishwasher!) Doing laundry in my own space 2 days ago was ridiculously blissful! Hey, it's the little things! LOL!!!
On a sadder note, one of God's brightest lights was called home last week. A young woman I used to babysit, whose mother and my mother are extremely close friends, died unexpectedly. She was only 30 years old and pregnant (due at the end of February). Truly a gift from God, her newborn daughter survived. I attended her funeral today, and since hearing of her death, have been navigating waves of sorrow, shock, sadness, and wistful memories of this wonderful young woman.
The Eulogist highlighted a scriptural passage that always manages to comfort and uplift me in times of great challenge, sadness, and fear.
2 Corinthians 4: 7-12 / 16-18: "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you... Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Seeing our lives, our bodies, as strong, yet fragile, jars of clay, has always been a meaningful metaphor for me. Cracked pots (us) may seem damaged, but we are made perfect in that seeming weakness through the healing and transformative love of Jesus Christ.
As I said at my T6 party (which this young lady attended with her mother), "even if physical healing doesn't come, spiritual healing has already taken place." Who can explain or even fathom that I, the one with the dread disease, facing multiple surgeries and several more treatments of all kinds, would outlive a young, vibrant, beautiful, pregnant, HEALTHY, woman with her WHOLE life ahead of her? I can't, and I won't even try. I have to rest in the assurance that God knows what He is doing, even when, ESPECIALLY when, I am, as the gospel writer says, crushed and perplexed.
Ironically, one of my favorite Christian groups is called Jars of Clay, and when I came home tonight, I listened again to the CD Redemption Songs. One of the songs on it is "God Will Lift Up Your Head"
Give to the wind your fear
Hope and be undismayed
God hears your sighs and counts your tears
God will lift up, God will lift up, lift up your headGod will lift up your head
God will lift up your head
God will lift up your head
Lift up your headLeave to His sovereign sway
To choose and to command
Then shall we wandering on His way
Know how wise and how strong
How wise and how strongThrough waves and clouds and storms,
He gently clears the way
Wait because in His time, so shall this night
Soon end in joy, soon end in joy
Soon end in joy, soon end in joy
Soon end in joy, soon end in joy
Soon end in joy, soon end in joy
Soon end in joy, soon end in joyGod will lift up your head
Soon end in joyGod will lift up your head
Soon end in joyThe song can be heard here ---> GodWillLiftUpYourHead
February will be a short but busy month for me. Thank you for your continued prayers and support! They mean the world to me and are much appreciated!
Lovingly, One of God's Cracked Pots, Alaina
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Alaina,
So sorry to hear of the loss of your friend at such a young age! Thank you so much for your words...I truly believe God is in control of our lives and even though we may not always understand why things happen...he has a perfect plan. My favorite verse is Jeremiah 29:11
"For I know the plans that I have for you", declares the Lord. "Plans to prosper you and not to harm you, Plans to give a hope and a future."
Thanks for sharing!
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Cakelady - I had my surgeries at Kaiser Fontana and I go to the Oncology/Radiation at the new Ontario/Vineyard facility... It sure is convenient since I go weekly for Herceptin. I had my 4th chemo treatment today...so far so good, but then my worst days are 3 through 7. I saw a different Oncologist today, she told me the twitching of the eyes wasn't a common SA, but should eventually go away when I'm done with chemo. The hearing loss unfortunatley, caused by the Carboplatin, doesn't.
Anyone out there experience this. Again she stressed drinking lots and lots of water it will help the ear canals. 0 -
I have always loved that verse also BlessedBy4.
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Anyone experienced skin irritation on their face? Mine is red, blotchy, hot, dry and very sensitive. It feels like a really bad sun burn. The female oncologist I saw today told me not to wear any face makeup ( which I haven't been) or any products on my face (which I had started using Aveeno moisturizer with a SPF 15) but I could continue to put vaseline on it, which soothes it. Any other suggestions?0
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Cincan~ My oncologist said the samething but I had it. It went away
Keep up the good work.Alaina~ I am so sorry to hear about your friend, but happy that you moved.
I am thru my surgery and doing great so far. I still have some recovering to do but after tomorrow I get to do it at home
My new girls are nothing short of amazing thanks to the wonderful Dr.Sullivan. He really, really helped my self images which over the last year has taken a beating reover some. I am looking forward to coming back to NOLA in 11 weeks for stage 2.0 -
Cakelady, I am a Kaiser Bellflower/Downey patient but get my radiation at the Kaiser in Ontario/Vineyard.
Cincan, I had the eye twitches during TCH as well. They went away now that I'm just on herceptin. I did not have the hearing loss. I didn't know that was even a possible side effect. I am still having some slight dizziness even now with just the herceptin. I wonder if the carboplatin messed up the equilibrium in my ears. I hope it's not anything else. Of course my mind goes to that "bad place" and starts imagining brain mets. . . . . . . .
I didn't have bad skin during chemo. In fact, I had better skin than when not on chemo! I normally have very oily and break-out prone skin. Not on TCH! That nasty stuff made my skin nice and dry and smooth. (I guess I'm allowed to celebrate the one good perk of chemo!) No breakouts at all.
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Just thought I would pass this on to anyone going thru chemo. What a wonderful service.
I checked this out on Snopes, and it is true.
http://www.snopes.com/inboxer/charity/cleaning.asp
Cleaning for a Reason
If you know any woman currently undergoing Chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning - 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. http://www.cleaningforareason.org/
This organization serves the entire USA and currently has 547 partners to help these women. Itâ€TMs our job to pass the word and let them know that there are people out there that care. Be a blessing to someone and pass this information along.
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CinCan.. oh, really? I just had my tissue expander surgery at Ontario Vineyard a couple weeks ago, at the ambulatory surgery center there, but I will have the exchange surgery at Fontana when the time comes. My plastic surgeon is in Fontana but he goes back and forth to Ontario. I did have a lot of eye twitching!!! thru chemo, and everyone here did too, I heard it was a common side effect, but luckily it did go away after chemo.
Weety,, Its nice to have another local Kaiser buddy. Everyone told me my skin looked really good too on chemo....I don't normally have any breakouts, but people could tell my skin was even better.
Since you two are also with Kaiser can I just ask you if you have been given any types of PET scans or CT, or MRI or anything like that since all this started? My doc says they don't do any scans in early stage cancer, unless there are symptoms that need further investigation, because they are not helpful and would expose us to unnecessary radiation. The only thing they do on me is blood tests , and my numbers have been steady all along. And they do the MUGA scan of my heart every 3 months while on Herceptin.
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Okay Cakelady, I'm glad you asked because this has been bugging me, too! NOOOOO--they did not give me any scans before I started chemo. It makes me so nervous because how do they know for sure that the cancer had not spread somewhere else? When I went for my initial consultation, my onc said that we could get a baseline scan (I'm assuming she meant a CT scan) but she would rather not have to wait another 2-3 weeks to get all that going and she would "rather just get started to get that herceptin in me as soon as possible." So, no scans for me. I just naively assumed that was the best thing to do--to get started with chemo as soon as possible. I asked her after the first couple treatments about the scans again, and then she said she didn't want to add any more things for my body to have to handle while going through chemo. Okay, makes sense. So I waited longer. After chemo was finished, I did get a bone scan (I had an elevated tumor marker test mid chemo) so I think this was to make sure there was nothing in the bones. Thankfully that was clear and the next tumor marker test went down back into the normal range. At my last appt she did mention getting a possible CT scan again as a baseline "if I really wanted it," but then radiation got thrown in for me at the last minute and the CT scan was suddenly off the table again because she didn't want me to have anymore radiation than I would be getting with the rads. (She said "they'll CT scan the heck out of you for rads")
So. . . I don't really know now where she's going next. Am I or am I not going to end up getting my baseline scan? Don't know. It seems it changes from one appt to the next.
Here's one more weird thing: I never got my 3 month MUGA scan either. She did it once before chemo and then told me I could get it done right after chemo was done. That would have been at the 4 month mark. But she never mentioned it again and time keeps ticking away. I brought it up again and she said I could do it between 4-6 months. I had a 6 week break between chemo and radiation (still no muga) and now the end of Feb will be the 6 month mark and STILL no muga. I hope my heart is strong! I will see her next week and will ask again. . .
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Cinrae- Tomorrow Cleaning for a Reason will be coming to my house to clean! The process to be approved takes a little bit of time. First fill out the application on line and then bring something to your ONCO so that they know about it. It also will give them the number to fax something that says that you are a cancer patient. Then you will recieve an email from the company stating that you are approved and then a phone call lettin you know when they are going to start.
The company that does the cleaning still pays the cleaners, but the company doesn't charge you any thing. They company that is doing my cleaning gives you four 3 hour cleaning session (one a month) - basic cleaning! I can't wait. A few weeks ago 3 of my bestest friends came over and cleaned out house top to bottom, all while I napped!
What great friends!
Have an awesome day!
hugs, Just-Sher
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Amy: I had a problem with Medicare agreeing to pay for Herceptin only txs. Scary thought because I still had 17 or so tx's to do. Hospitals and recognized cancer treatment centers that have their own billing departments tend to fair better when dealing with the "red tape" and my situation was finally (after 7 months) resolved in my favor. It's just one more stress factor that we have to deal with. Keep fighting. Herceptin is an accepted protocol when set up as part of an overall treatment protocol. Keep us posted.
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Cican: I experienced hearing loss in my left ear during TCH. My ear just felt stuffed like air plane pressure change and hearing was dull and muffled. My onc said that it is rare, but not unheard of. The TCH (as we all know) causes hair loss and there are little tiny hairs in your inner ear that generate the sound waves and you can lose them as well. This can cause permanent hearing loss/disability especially in young children. It's called "ototoxicity". My hearing came back about 5 months after completion of TCH. I also had eye twitches and tearing that cleared up about 3 months after TCH.
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Well today unfortunately is worse than yesterday for me. I found out more about the insurance. it isn't that Blue Cross won't pay AT ALL for H, it is that they underpay and the onc's office isn't willing to take the loss. The hospital will do so and then 'work something out' although NO ONE will tell me what the payment shortfall will be. I checked with the insurance company and they said taht for all drugs, the hospital has to contact Walgreens. I said I was pretty certain you do not get Herceptin at Walgreens but I got nowhere. Finally I found out from the billing department at the hospital that my new insurance may not cover this hospital/cancer center AT ALL and I may have to go somewhere else! I started crying at that point. I am extremely organized and on top of all my medical paperwork, and this was like having countless dead ends. Not sure if H will be covered, and if so, how much will be covered. Not sure if this hospital is covered, not sure what I am supposed to do now. THANK GOD only 4 Herceptins left. If I had to, I could just skip them, I guess. I am NOT WILLING to just get treatment and figure out the money later. That seems totally irresponsible to me. I am scheduled for Herceptin on Friday. Not sure whether to go or not. We are talking about BIG money here, not just a little. That is why I am so concerned.
So finally I did get a lady at my onc's office who is going to talk to the insurance co and try to find out if I can still be seen at this hospital. And if not, then what to do, and if they will pay for Herceptin anyway.
It was SO frustrating. The lady at the insurance co kept saying "is it a chemo agent or an injectable drug?" and I was like "Well, it's like chemo, but not exactly chemo, but it's not just an injectable drug like insulin would be." I don't know how to explain it exactly. And the clerks were like these totally unsophisticated (to put it mildly) young girls who wouldn't be specific or commit to ANYTHING or even understand waht I was asking...........
Wait.....she just called back.
OK so now the nice lady from my onc's office said she confirmed that I definitely CAN go through my regular hospital/cancer center. OR I can go to my oncologist's Maryland office, b/c she checked with Blue Cross and they DO reimburse for Herceptin at an acceptable level. it is the Delaware Blue Cross that doesn't, apparently. So now it seems like it will be ok.But instead of feeling relieved, I am shaken, scared and drained. I don't know HOW you women who fight with insurance all the time manage. ONE afternoon of this and I feel like giving up.
I could just delete this whole post now that things seem somewhat straightened out but i want to post it anyway just because I know you ladies will understand. This financial stuff is more upsetting than the cancer, or close, anyway. Damn.
One bright spot - my port comes out on 4/26. I was excited about that when I made the appt, until all this awful insurance stuff started.
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Weety.........ya I would assume that everyone gets a scan in the beginning so that any future scan would have something to compare it to. I guess Kaiser doesn't do that, unless you have symptoms or bad blood tests or whatever. But I do know they do the MUGA scan , and I have gotten that every 3 months because of the heart damage it can cause. With you , maybe because you didn't have any positive lymph nodes you probably won't have it spread anywhere. I had only one node positive, I think they will do scans if you have many positive nodes. Believe me , I keep asking about it, and they always explain that is not always beneficial to have the scans, its like looking for a ghost that may or may not be there. Oh well. at least Kaiser covers everything, all I ever have to pay is my 15 dollar co pay unless I stay a night in the hospital, and then its $ 250. All the reconstruction and Herceptin and all that is covered. What surgeries have you had so far?
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AmylsStrong I am so sorry you have had to go through this its hard enough to go through chemo and hecpten with out worry about them covering it. This is a good reason we DONT want our government to be in charge of our care I know from emailing to forgien people who have had BC and have governtment ins. in other countries..I really hope things work out well for you no one deserves this at all.
Maura
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The only good thing about the government here is that they pay for the herceptin treatments. One worry off my mind. Our private health is quite good - we don't have limits on hospital, chemo only on dental, physio etc.
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cakelady, I have only had the mastectomy surgery. I am quite tiny on top (barely an A cup) so reconstruction is not really at the top of my agenda for right now. Maybe down the road I'll feel differently, but right now I'm just fine with it the way it is. I don't even buy special bras or use a prosthesis. I just wear my normal bras "empty" and unless I push on the cup, no one can really tell that there is nothing there and wouldn't know that it's just the cup mold that is making the form of a breast in my clothes.
Yeah, Kaiser definately has its perks when it comes to cost. I don't even have a copay!
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(((Amy))) you poor thing...Hopefully you can get this all strightened out and keep your sanity too!
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Hang in there, Amy. Deep breathing tonight! Sounds like a total nightmare.
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Weety... Well since you are such a petite lady I wouldnt even worry about the reconstruction either. But I started out as a DDD and I am not a small person, I am overweight, so after I had my bilateral mastectomy I looked like I was pregnant with no boobs! because my stomach stuck out farther than my chest. I did wear a nice set of prosthetic boobs I got from Nordstroms (also paid for by Kaiser who has a contract with Nordstroms for the Amoena breast forms) They felt real to me, and it was nice because I got to have a C cup instead of those enormous DDD's I have always had. I wore those up until 2 weeks ago when I started my reconstruction, so right now I am kind of flat chested but will expand every 2 weeks until I get to where I want to be. I am still a bit sore from the surgery so I only wear a sports bra part of the day.
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Wow - my hubby works for Blue Cross and I can tell you that they have the most confusing payment system ever! So I can just imagine what you are going through. Through my cancer care clinic they actually have a person who's job it is to work with you and the insurance company to get it all figured out!
To make all the medical stuff even more confusing, we are crossing calendar years. And then for fun I thought that we should through in some additional vision exam (hubby) and dental work for me! I have a three ring binder now trying to figure out what needs to get paid. I have learned that some of the billings, I only have to pay the last one, others med facilities I have to pay each bill that is sent to me, and and others may be ignored as they have been totally paid by who knows?
I can hardly believe how much knowledge we are all gaining. First, we are now getting our medical degrees, learned by the seat of our pants... and next are are receiving our financial certifications! New career choices ladies!
Well, off to try and figure out who gets what! Oh, and by the way the Cleaning for a Reason woman are here cleaning my house right now and doing a FABULOUS job! If you haven't checked them out, be sure to do so soon! You have to be in active treatment to be eligible!
Hugs to yas~
Sher
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Hi all
Just had treatment #2 yesterday. I wrote a long post and as I am on here today - don't see it? Hum, must be that massive about of benedryl they gave me, maybe I dreamed that I typed something.
Amylstrong - sorry to hear about your insurance problems - but it seems by the end of your post everything got worked out!
Good news from my appt yesterday is that my mass, after one TCH treatment, has shrunk by at least 1 cm! Boy was I happy to hear that!!
So here it is day 2 after round #2 and my face is bright red - like a nasty sunburn but only on my cheeks. This happened around day 3 after my first round, so I was surprised that it happened this early after #2. My doc and nurse both told me it is a side effect of the steroids. Other than a slight headache, that is it so far. Due to give myself the "shot" this afternoon.
And, I also have cleaning ladies coming today. My neighbors actually own a home cleaning business and when she called to see if there was anything that they could do, I joking said "Clean my house" and to my surprise she said yes! So, I have 3 people due this afternoon for one hour to clean whatever I want. I just have to find a place to put my German Shepherd as she is definitely NOT a people person.
Hope everyone is doing well!
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Hey stlcardfan- OMG we are totally on the same treatment TCH for the HER2+ with ER-/PR-, on the same day even. I go in on Tuesday so today is my day 2 after round 2 and yep - my face is a little red today. And oh so very tired! I swear I had way more energy from the steroids last time around. This time, I did go in yesterday for the Neulasta shot, which I didn't have after round #1. Not having it after round one landed me in HOUSE ARREST for 2 weeks except to go to med appts. So far not too much SE from the Neulasta - Yea! Did you get the shot?
OMG - and we have cleaners on the same day - how funny is that?
Having trouble with really dry mouth today and feel like I'm getting canker sores on the sides of my tongue - ouch. Just swabbed with the magic mouth wash - now just waiting for the magic to happen. Time to grab something to eat and another nap before the kiddos get home!
Just- Sher
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Just-Sher: Gave myself the shot about 45 minutes ago. My Doc is letting me give it to myself. So far so good as this is the second time I have done it. I actually have Chemo on Wednesdays and I think someone a while back in this thread or another one said that Chemo day is day 1. So, I think we are a day apart - but close enough to compare se's. Cleaners were here for 1 hour - and got alot done. Shut the dog in the basement bedroom and let her bark away.
I am on glass #8 of liquid and it is only 3:15pm. Have also started to do the mouth rinse every 3 hours, did that last time and no mouth sores. It is 1 cup warm water, 1/4tsp baking soda and 1/8 tsp salt. Take small sips and swish around the mouth then spit out. Gargle with a few sips and that helps the throat too.
I don't feel tired per say - haven't had to nap or anything yet, but not really doing much at home, just catching up on magazines, bills, etc.... Who knows what tomorrow brings!
Take care
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