Starting Chemo in March 2014
Comments
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Thanks Ladies, hope you are all having a good day. The funny thing is that I am still numb so she just stuck the needle right in. Didn't feel a thing. She said she did not think it would delay chemo. Is it normal to still be so numb this far out. Surgery was Feb. 10
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kiwilady, everything IS hard. But you have friends here :-)
Google tells me the 2 most common billing codes are S8095 and A9282.
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Thanks Nina. I cried a bit, told my husband that insurance sucks, also because the automated service can't understand a thing I tell them because of my accent. Then I called the oncologists but they closed at 4. I saw those same two codes you gave on a couple of wig sites, so I'm wondering if I just call and ask under those codes, if that will do.
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I can't see why you shouldn't. Give it a try, and good luck!
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((Kiwilady)) I hope tomorrow is easier !
NurseLaura, yay on not delaying chemo!!
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Mine was submitted with code A9282. I have Aetna.
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Kiwilady, so sorry about your insurance issue. I am not a big cryer, but even I've had my moments. I had my port put in yesterday and was surprised how much pain I was in today. I had a good cry next to my pups, who seemed to know I was upset. Feeling better as the day goes on. BTW I def like advil better than tylenol.
I start chemo tomorrow. The "not knowing what to expect" is the worst. I never thought I was such a planner, but this cancer thing really screws up any plans we may have. I"m nervous, but I gotta start before I can get finished.
Meg
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OMG Kiwilady-the wig thing for me has had me so wound up for the last 2 days I have had more then one meltdown over it! Between the insurance company and the wig shop, shoot me now! So sorry you are going through it, too, frickin ridiculous!
Nina-My MO sounds like the one you are going with, he discusses things with me, decides things together, listens to me, he's very engaged with all his patients. I've known him professionally and now as a patient, he's amazing. Happy for you that you have a great one, too.
AKJ-hope you are feeling better and getting the hang of things. I'll be looking to all you ladies when my chemo starts next week or the week after. I'm also going to be working, trying to work, about 3 days a week when I start.
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Thanks for the encouragement guys. It helped calm me down. I gave them the two codes, they said that only the A9282 is still applicable. However, my insurance doesn't say that it is included, or excluded. So she didn't know and had to ask her manager. So now I will wait to hear back in the next 48 hours.
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Megomendy -good luck tomorrow, let us know how you are.
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Kiwilady, I think a meltdown is needed every once in awhile. On January 11th I was diagnosed, on the 26th, my 38 y/o brother passed away unexpectedly and on February 12th, I had my BMX. Some days I don't know which is making me cry and I decided it doesn't matter. We can't control what we feel, all we can do is ride the wave. Hugs from PA!
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Wishing you a good start to your first chemo Meg, we are all with you. I wanted to let you know that I was born in Freehold NJ. Jersey girls rock, nor do they pump gas! My mom is still in Normandy Beach and I get back as much as I can. Love the shore. Big fist pump out to you
Laura
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Good luck Meg!
And thanks MaggieMay. I think that I was probably just overdue for a cry. You certainly have had a lot put on your plate all at once. ((hugs)) I think your advice of just riding the waves is great advice. Thank you.
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img 58, one of my docs told me about the Claritin and I'd read about it online. So yes, I took it the day of the injections. Days 1-5 were ok, not too much pain but day 6 was horrible. I've never felt pain like that before. But it's gone now and I feel much better overall. My goal is to make it through a full work day tomorrow without having to go home early.
Kiwilady, I'd cry too. Having to deal with these stupid details when you're so strung out emotionally and physically is so frustrating. The insurance companies don't make it easy for the wig thing. And it's hard to know exactly what to do. I had no problem getting coverage for my bras, prosthesis, second opinion, but the wig thing seems like this black hole area. I'm still trying to figure out how to get that covered and haven't had the energy to pursue it. Now that I'm feeling a bit better, I'll take it on. Good luck. Try again tomorrow, maybe you'll feel more together.
Nina, I'm glad you got your second opinion and that you feel more comfortable with your oncologist. It's nice to have the personal touch. Was your second opinion different than your original MO's?
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port vs picc vs iv each chemo and some other random questions...
Hi. Just wondering how your onco's are addressing how you all get chemo? I put in IVs for a living (for past 24 years) and know I am what we call a hard stick. And that was when I had 2 arms that were useable. So I was pushing for a port. Surgeon was all set to do w my re-excision yesterday since I would already be In the OR and asleep. My onco is pushing back and prefers no port since I might only need 4 rounds. The nurse navigator is also anti-port, called me to tell me she cancelled the port placement the surgeon was going to do with my re-excision, and keeps assuring me the chemo nurses are good at IVs. I have no doubt of that, but I also know my veins better than they do (personally and professionly so to speak). If one more person tells me "your chemo nurse will decide", I might scream.
I am trying to NOT make waves, but I'm very frustrated and would like to not use the navigator. Do all of you have a port/picc? Thoughts? Anyone else have/had a similar issue?
Also, in CT, insurance companies are mandated to cover a wig up to $350. So Trying to decide b/w wig and scarf/cap. Will I freak out my patients if I go the scarf route? I know ally tried wigs on. Anyone else? I wear my hair back in a pony at work anyhow. Will I regret not getting one? The cold cap looks awesome but nowhere in my budget. The hair loss is prob what's freaking me out more that anything else. My mom didn't get chemo w her breast ca (celebrating 25 yrs this June!!!) just mx and tamoxifen and my dad shaved his head w his chemo and looked even better.
I am amazed at your strength and resilience, and it has been a wonderful relief (in a twisted sense) to see I am normal (or else we all belong in a loony bin)
I hope everyone has a better end of the week than it seems the beginning went.
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medicmom- I wanted a port. They didnt really even ask or say anything besides port. I also start IVs (ED nurse) and want to save the veins in my arm for the long life this process will give me. Chemoisharsh on veins. Also taking long hot showers is my coping mechanism so I did not want a PICC. Go with your gut.
Go wig,scarf, and hat; let your daily mood decide. I am getting several wigs, short , long, blonde, red. Entertainment for me if not my husband.
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Hi MedicMom2 sorry to hear about the push back you are getting. I am in medicine also and realize there are games played. I guess it also depends on your chemo RX, but I believe you should have the choice either way. I have been a nurse for almost 30 years and never was good at IV's. It's a gift. I did get a port placed but will need medicine for a year d/t Herceptin. You are lucky to have the wig option. I have Kaiser insurance here in California and was told they do not cover wigs. Has anyone gone to the look good feel good workshops through American Cancer Society? I signed up and will go end of March.
Laura
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Seems like quite a few of us are in medicine and diagnosed with breast cancer. I wonder what the statistics say about that? Hmmmm
Laura
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Nightshift increases cancer risk. All I have ever worked.
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medicmom: I am getting a PICC line...doctor here didn't want to do a port since I'm also only 4 injections; I asked for port and she said it wasn't necessary and really sort of blew me off on that one; my first consult was at Mayo, however, and they said they'd only do a port no matter what. So, I guess I'm stuck with a PICC line here...I have heard of several people who had it that said it wasn't too bad. I am told I have tiny veins that are hard to find and they have an especially hard time in my left arm finding any, and that's where the PICC line will go. Getting it placed the same morning as chemo starts. Ought to be a fun day all the way around.
The hair loss part isn't freaking me out...just the prospect of chemo. Actually, I went on a whim to try on wigs while I was at the Mayo and found out the American Cancer Society gives out some wigs that are free....so I just got a free one there. I opted for that since I didn't know if I'd just end up just wearing a cap or scarf. It's not as great as one I might pay for, but it matches my original hair style and color and I'm pretty happy with the way it looks overall. I have a feeling, however, I will opt for the easier option of a cap--I can't imagine me keeping it on straight all day...lol. I'm not caring too much what I look like through this, even at my office. I am having a hard time with my sutures healing in one place and can't wear my cami because the arm line is right over where it keeps making it hard to heal .... (I opted against reconstruction). Been going to work totally flat, with a big bulky sweater to sort of make it not quite so obvious, but even so, I don't care. I start chemo 3/13 and am going to get my head clipped/shaved/whatever they do at the hair cuttery place across the street as soon as I feel better...probably a few days after chemo.
Meg, I will be thinking of you tomorrow! I hope it all goes so smoothly for you! Please let us know how you fare.
That's interesting about the night shift thing. I read today that depression makes breast cancer worse all the way around. Great. I've been totally depressed and stressed to the max for the last 7-8 years because of a series of bad things that have happened. If that is true, I guess I'm going to somehow have to learn to walk on the sunny side of the street from hereon out, which is a good thing anyway.
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Meg, good luck tomorrow.
I met with an energetic healer today, recommended to me by a friend (stage 4 colon cancer survivor). She told me to embrace the chemo medication for the power it has to help heal me. That I shouldn't fight it but I should try to visualize it helping destroy the malignancy.
It was an interesting appointment though I didn't understand all of her assessments of me. She did identify some sore points around my body and somehow cleared the pain. I'm used to that with acupuncture but she was only using light touch or hovering her arms above my body. Very curious.
She said that she sees that my malignancy is tied to pesticides, that my body has a hard time digesting protein even when it gets enough, that I'm dehydrated, that I need more healthy fats in my diet (she told me to take flax oil), and that I am still too acidic and I need to eat more greens to promote alkalinity in my body. There was more to it than that but it was extremely interesting.
Her diagnosis largely parallels and complements the Chinese medicine diagnosis and what I know to be true. Western docs can't see any of it which boggles my mind. I am pursuing this complementary medicine path as western cancer treatment is just looking at the malignancy and not the environment it developed in. I am optimistic that my alternative medical providers will help support my body through treatment and help me restore my health after that.
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Good luck tomorrow, Meg - go get 'em!
Medicmom, I'm going to guess that the cost/benefit analysis on getting a port for you with early-stage, hormone-positive/HER2-negative BC isn't worth it for a variety of reasons, not the least of which would be exposing you to the potential hazards of installation/removal/risk of infection (ugh, don't google problems with powerport, whatever you do). While there's no denying that ports are awesome for hard sticks and for those who are in for lengthy treatment, you know that the nurses can get veeeeeery creative with the whole "find the vein in the haystack" situation. I think maybe the best compromise would be for you to do at least the first infusion without a port to see how it goes. That way, if it ends up being incredibly difficult, you can say that you tried it their way and now you'd like your port, pleasethankyou.
AKJ, the Sloan MO was really sort of pushing AC-TH on me as her protocol of choice. She quoted BCRIG006 to me (which I could probably recite from memory at this point) to support her recommendation, which sort of amazed me, because Slamon's early conclusion in that indicated that TCH and ACT-H are pretty much statistically equal in treatment of early-stage HER2-positive cancers - a conclusion that was further supported and strengthened in Slamon's updated long-range follow-up to that study, which he just presented at the 2013 SABCS. The key difference is that TCH has proven to be less cardiotoxic. Hey, this is my heart we're talking about. Herceptin is already a beast from a cardiac point of view, and if the increase in efficacy is negligible, why would I risk it for an early-stage cancer?
She said "It doesn't really matter to me if you feel strongly about doing TCH. I'll do that with you too if you prefer it." I found that a little disappointing, to be honest, because I'm not the one with the medical degree on my wall. If she felt really strongly about something, I think she should have made a better case for it and given me a reason to trust her instinct. She SHOULD care, is what I'm saying. As it was, I felt that she was capable but largely advising me to go with what might boost their statistics by the teeniest fraction. And as we all know, none of us are statistics :-) I'm not there to make anyone's books look better. I'm there to get rid of my cancer without killing myself in the process.
Alli, I'm so, so glad I'm going with the first MO. I don't think he's a miracle worker, because I don't think ANY doctor is a miracle worker. But I do think he will care about me and treat me with thoughtfulness and an eye toward doing everything he can to get my risk of recurrence as low as it can possibly go. He's the type to call you after your first infusion in case you don't think you should call him to report how you're doing.
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Nina - I had such a similar experience between two MOs and my chemo recommendations that it is uncanny. I'm also going with the first MO who I met with and he was very specific that it was because of the risk to the heart that he recommended TCHP.
The second MO was like, I'll let you decide. And I was like what? I went to art school, isn't this your area if expertise?
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Uch, agness, it's crazy, isn't it? I wonder if they do this to indemnify themselves in the event of a recurrence, or if they just don't feel like making a decision. I realize that so much of treatment is a matter of interpretation and playing the statistical angles, but still, why should the patient be making the educated guesses when we were kind of forced into a crash-course on this stuff, and the people in the white coats presumably spent years and years studying it all.
And we already feel so vulnerable. There's an enormous comfort in being cared for by a doctor who has a firm opinion, backs it up with evidence when challenged, and appears confident that his or her recommendation is your best option.
Although seriously, when I'm looking for a visual representation of mitosis, I'm totally hitting you up to paint that, okay? I spent two decades in entertainment public relations and marketing. When you're done with your painting, I'll get you on the new Tonight Show and you can tell Jimmy Fallon all about it :-)
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my mo also I didn't need a port. I am going to as him about on Tuesdayit . I am going in to ask him the questions I have. Then I will get my chemo start time. I really didn't want a port if I didn't need one. I have pretty small veiny arm. I guess I will see how the first one goes.
Lori
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They recommended a port for me instead of a PICC line or IV as:
- As my malignancy is HER2+ I will require a year of Herceptin treatment every three weeks
- I have young children and the port is more out of the way and I have to use my arms quite a bit (the surgeon also has young kids)
I get my port on the 18th and I'm not looking forward to:
- Healing from a surgical wound
- Not being able to wear a backpack (argh! It is so helpful to be balanced and hands free)
- Not being able to get comfortable sleeping on my side as night
- Having to be careful when snuggling my kids for a while
Boo! Cancer sucks!
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My onc had me get a port, even though I'm only doing 4-6 rounds of CT. I'm a nasty stick, so it'll be much easier on me and the nurses. Luckily, my BS was a whiz at placing it. I had it put in on Wednesday, and although that area gets a bit sore, like a strained muscle, I have not needed any pain meds.
Had my first infusion yesterday, and actually managed it without Xanax. Icing through Taxotere was a bit much, but got through that as well. My feet were not that difficult, but keeping my fingers iced was rough when I also wanted to grab some ice to chew. The SE's so far are predictable, fatigue and nausea, both pretty mild. Getting ahead of the nausea with some Compazine last night probably helped, and I think I might try some ginger root after the next round. I also had some facial flushing last night, but that also was mild, and is gone this morning. On to the Neulasta shot this afternoon. Claritin, here I come!
Best thing about yesterday - my daughter, who has been cutting and styling her own hair for quite some time, has volunteered to give me my chemo cut in another week or so! I've been hesitant to ask her to do it, not knowing whether she'd be comfortable. To have her want to do this for me means the world to me.
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T Y! I'm leery on the PICC in case I do work in b/w. ( Although not so sure after reading here. ). I'm afraid of an infection at work or it getting pulled at. But I'd do that if offered or work allowed it. Had 2 PILs before when I was pregnant (non-pregnancy related medical issue) so that beats umpteen sticks. I don't know if they do them anymore (like a picc but placed from elbow to under clavicle).
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good morning everyone!!
Good luck, Meg! Will be thinking about you:)
I am not going to get a port. I had one the first time though. My MO said I can do one or two treatments and then decide.
On the wig prescription., I already have one. If anyone wants me to get them one I can ask my MO to write me a new script. Then when go into a store see what you like then we can order it. I did wear mine a few times but I had a hat/scarf party and was all set. Also I had chemopause. I had hot flashes really bad. I would just want my wig off. I did have my favorite hat I liked to wear because it was so light weighted.
I go see the chemo nurse today. Any questions you think I need to ask? I know when I start TX no apples, spinach, broccoli and things like that but I need to ask about me prenatals and how to keep my WVC counts up!
Only got 2 of my stitches out yeasterday from my lumpectomy. She said with my implant and taking so much out it was really tight so ii have to go back in 2 weeks to have the rest out.
Hope everyone has a great day!! ((())) big hugs to you all:)
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YAY, Kris103!! I am so happy for you:)
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