Starting Chemo March 2015

eheinrich

Good news Allison! Thanks for keeping us updated. On this site this is the only thread I follow anymore. I just come for the support, not to hear worst case scenarios.

I can't believe how expensive all of this crap is. I haven't seen a chemo bill so I didn't know until you ladies shared. Seems really over the top.

Happy Friday everyone.

BBwithBC45

I have been studying EOBs closely recently, because I had to put up a few fights with billing and with insurance. Yes, chemo is ridiculously expensive, especially Herceptin. Taxol costs peanuts for the insurance. Also, now I know why they don't want to cover other anti nausea meds for me and they insist on Zofran - it costs them only $0.72 (yes, less than a dollar) per infusion. My out of pocket max is $5,000 which I met long time ago with my two surgeries this year, and they still want me to pay copays. Isn't it illogical if they want me to pay something after I met out of pocket MAXIMUM? Am I misunderstanding the definition of maximum?

SueH58

So Special K, as long as you brought up your surgery habit, I did notice that your "biography" takes up the whole screen. I wondered if there were issues, or if they've just tweeked you to perfection!!!!

molly1976

BB, I had to pay a couple co-pays after I knew my out of pocket max was met, and they ended up sending me a refund. After that I started explaining the max was met and they didn't push me on it anymore.

Italychick

Allison, I am so sorry for what you are going through. I have no horror stories about blood clots, every story I know is positive. Three people - clots in leg, heart and multiple pulmonaries - all did the blood thinners, all 100% perfect and no longer on medication. You will get through this.

I can't speak for everybody, but I'm pretty sure everyone on this forum is behind you 110%. Please rant, rave, do whatever you need, and we will listen.

Jackbirdie

Allison- I am so relieved and yet still a bit concerned, as I'm sure you are until all is resolved. So glad you have access to Xanax. So sorry you are going through this. And you had a feeling. The takeaway is we should all be listening to our bodies and not think we are being babies if we bring stuff up.

I apologize for the late response. I guess I misunderstood something yesterday and they did diagnose me with pneumonia. They called is "infiltration". My shrink told me later what it meant. It must not be super bad, as they did not hospitalize me. Strangely, my counts weren't that bad. I guess the crushing bone pain may be worth it if the Neulasta is doing something to help me fight infection in a round about way.

I thought I was feeling A LOT better today. Then I got up and started to move around a bit which began to dislodge the unmentionables. Hacking ensued. Back to not being able to take a full breath. Without "tripping" over it.

My plan today is as little as possible. As many fluids as possible, as I am taking Mucinex along with the ZPac.

Will dope myself if necessary to sleep haha.

Hope everyone is ok, not too many SEs.

It makes me so sad to hear people are having trouble coming to this board. I understand perfectly well why it is difficult. And so tempting when bored to look at a few things I shouldn't be looking at right now, so I try to stick to this, the gardening thread, and a few others where I feel maybe I can help.

It's been said before that the membership is no doubt "skewed" towards women with worse prognoses and issues, as it makes sense if there were no problems, most would be off living their life. But I would miss any of you who left so much. You have made my life during this awful time so much more livable. Not just with hugs and support, but laughter and solid information as well. Please don't go!

xoxoxoxo xoxoxoxo

SpecialK

Molly - I have a no deductible, no co-insurance plan - all I have is a co-pay of $12 for office visits, $25 for hospital. I am wondering if your out of pocket max includes both your deductible and co-insurance percentage and that may be why they are billing you past your max. Or, maybe if you are being billed by multiple sources they have not realized you have met your max.

Sueh - here is the short version of my surgical history. This site doesn't provide enough detail so it is hard to tell what is up. I had BMX with expanders, right SNB was clear in the OR but pos in the lab, so I had ALND five weeks later with another big pos node. Two weeks later my left expander ruptured through necrotic skin requiring emergency surgery. Two weeks later more skin excision surgery, two weeks later the expander was removed so I could start chemo. Seven months later expander was replaced while I was still on Herceptin. Fills were done slowly and I had exchange. A year later a fat graft to fill hollows above the implants. Last Mar I had repair bi-lat to the allograft and my skin tore in the previously repaired spot. A month later skin repair again and smaller implant placed in hopes skin would close. It didn't so the implant was removed last May. In Nov I had a fat graft to the flat side in hopes of providing vascularity and strength to the weakened area. I have surgery again in 12 days to remove the remaining allograft, close the still open skin and fat graft again. This is being done in hopes I can place an expander at the end of the year. So... perfection? Not so much, lol!

BBwithBC45

SpecialK, I would have gone crazy by now. How do you hold up with all of this going on?

Jackbirdie

Special- I cannot even begin to imagine what you've gone through yourself, and adding in top of that the losses of family members to cancer which you mentioned before.

The fact that you remain willing to help by answering questions based on both your experience and what appears to be voracious research astounds me. I would think you'd want to get as far from all of this as you can. But nobody can help like someone who has been through it.

Your generosity of spirit is much appreciated..

Italychick

Katy, so sorry about the pneumonia. If you are having the crappy weather today that we are having, I say curling up on the sofa with Jack, a good book, and a cup of tea with some of those yummy cookies today for you! Actually, it sounds good anyway. Hope the Mucinex helps clear you up. I am a Vicks addict when I get congestion - both the topical and the nasal inhaler.

Jackbirdie

I have some Vicks! Will try sumodat.

I also do a makeshift nebulizer with eucalyptus oil in a spaghetti pot. Boil water, dump in the oil, drape a teatowel over my head and (try to) breathe. Helps to break things up. I'll try anything!

It's just so hard to get up out of bed!

PrincessOfMeh

I've not been around because my AC side effects were so mild, I felt guilty about all the posters who were enduring so much worse. Also, I came down with killer allergies after the first tsunami wave of pollen anarchy here and have been horrid sick the past 2-3 weeks. I mean, I didn't cook for 10 days solid, when I adore cooking, and no knitting, either. I was just a slug. Horrible. I was gone so long from Facebook, my nearest and dearest were preparing to send cadaver dogs in search of my corpse. (Heh.) As bad as I felt through it, they didn't admit me to the hosp, but I'm on z-pak and a nasal inhaler thingie and eye drops, slowly working my way back to feeling not so wicked bleh.

Anyhoo, the news with me is my MO and BS finally settled their disagreement and my dx changed to early ibc. Turns out, my MO said no to ibc because less than 33% of my breast was involved and the inflammation wasn't big enough...yet. My BS said that was bs (LOL), getting it early is G-O-L-D and early didn't meant it's not ibc, just means we caught it before it spread so explosively far and fast. THANK GOD. Whatever, lumpectomy is officially off the table. I'm coming to terms with that again, but struggling with the renewed ibc dx something fierce regardless. Just very hard to absorb.

On a brighter note, I started weekly taxol and so far, I'm tolerating it even better than AC. Aside from my allergies, I feel fantastic. Oh, also, Mr. Lumpy has shrunk from 3cm to pea-sized, maybe less at this point honestly. I can't find him most of the time. Only if I'm really, really digging around do I think I still feel something there, maybe. That nipple is still inverted so I know something is still going on in there, but I'm moving in the right direction. C'mon, baby, Momma needs a complete path response! C'mon, c'mon, c'mon...LOL

Trvler

Princess: THANK YOU for telling me how well you are doing. Just thank you. And I can't wait to hear Mr. Lumpy is GONE.

Thanks for all of the kind words. I AM giving them in the tummy. Gotta make sure my 11 year old doesn't see the syringes. She will freak.

Katy: I don't know if anyone said this to you with your pneumonia and I am no doctor but it is important to move around some to keep that fluid from building up. And when you are lying, try to sit up a little bit.

Trvler

Special: Wow, I can't believe you have gone through all of that and still manage to come back here and help us. THANK YOU.

PrincessOfMeh

Jackie, I've been drinking herbal peppermint tea with lots of lemon and local honey, but that said, mine's all stupid allergies run amuck. Lemon and local honey helps with that and the steam from the mug helps loosen the snot fest up a bit. I've diffused a couple decongestant blends, premade and until they start paying me a commission (not holding my breath, LOL), I'm not recommending any company's blends, LOL. Also a prepacakged roll-on that's a decongestant, but it's mostly eucalyptus, probably some ravensara too and a few other EOs I was just too lazy and sick to mix myself. I honestly haven't looked at the ingredient list. Nothing's really worked. Until pollen counts drop, I don't expect anything to work. I've had allergies forever. It's usually not this bad, but pollen here is just dreadful this year. My sad luck that my immune system happens to be comprised for this stellar occasion.

ETA: We reached our catastrophic health cap about a month ago? I haven't been billed for a dime for me or the rest of the family, including prescriptions, since. That said, we have what amounts to gold standard insurance. One of the advantages for the husband working where he does. It's hard. It's dangerous, but kick-butt benefits are yours if you wants 'em.

eheinrich

Yay! I'm going to do a sample case with the patent co. If they like me and I like and can do the work I'll be put in their pool of analysts working very part time for awhile and then hopefully more often. It's the kind of thing I can just sort of fit in around life.

KBeee

Allison, Hoping that blood clot clears soon. Good for you fro being so on top of things and getting symptoms checked out. Hoping it clears soon

Katy, Hope the pneumonia clears soon.

Karen, Must be the name, herbal tea with lemon and honey has been a staple for me lately too. Glad you tolerated the AC so well. People looking need to see that everyone responds differently, so I'm glad you mentioned how well you've done. I had a couple bad evenings (like last night), but have done really well for the most part too. I feel horrible about how rough some have had it and would not wish those side effects on my worst enemy.

Wishing everyone a restful, relaxing weekend. Springing forward to another week...which means another week of this is behind everyone...and one week closer to having it be history.

avmom

Hello, all. I haven't been around much lately, have been dealing with some SE problems. I switched over from dose dense AC to dose dense Taxol a couple of weeks ago, and my nausea is waaaaay down, which is a relief. Two months of unremitting nausea gets old. Taxol seems easier, overall, because my nausea is much much better. I had my second Taxol yesterday, and apart from the fact that the fatigue truck hits harder and sooner, and I've had very bad pain in my ankles and feet, this seems more manageable. My PCP prescribed a low dose of morphine for the bone pain, and it helps, but it does put me pretty much out of commission. My chemo brain is worse, and that is hard to bear.

I'm resting as much as I can today, as my DH gave me orchestra level tickets to Diana Krall for Christmas, and she is playing tonight. Doesn't start until 8, so I'm hoping I can stay up late enough to enjoy the whole performance. I do love Diana Krall, and have seen almost every performance when she is in the area. Wonderful pianist, usually with. Kick ass jazz trio, and just a lovely, lovely voice.

I have been reading the board, but just haven't had the energy or mental clarity to contribute. I'm not feeling too bad today, so am trying to raise my hand, if only to let everyone know, I'm still here, and still trying.

Best wishes to all for a healing weekend.

ninjamary

Well my eyelashes seem to be going pretty fast. I tried to put false eyelashes on this morning and that way a major fail. Actually it was pretty hysterical. I somehow glued my eye partially shut on the end. I'm a mess. My eyebrows will probably be gone in a couple weeks. Thankfully I have the stencils you color in and I might order some faux eyebrows from Cure Diva if the stencils look too fake. I think I'm going to more bummed out about my eyebrows rather than my hair.

Jackbirdie

Eileen- that is WONDERFUL news! Just what you need for a pickmeup and distraction right now. I love that you can start slow and work things in. BRAVA!

NinjaMary- so sorry you glued your eyes shut! Oh my! I'm quite certain losing my eyelashes will be the absolute worst. I can deal with the hair and brows I think. I've lost about 50% of brows and lashes, but I understand they can fall out on a completely diffierent schedule, and even keep falling out after chemo stops. But they come back. She said confidently.

Avmom- good to see you. I was beginning to worry. You must not scare us like that. Please do not feel you have to "contribute". Just hoist up the flag now and then ok?

I hope you are able to thoroughly enjoy the concert tonight! Glad also your SEs are a bit more manageable on the new regimen

Jackbirdie

Here's my burning question of the day...

Has anyone started to look ahead to getting their port taken out?

If so, how, where, and when? I have heard a vast array of scenarios, from yanking them out in the office to under anasthesia at the hospital. I do not mind going under. In fact, I am feeling so picked over, prodded, poked and stuck that I prefer it.

I don't believe for me it will be worth leaving it in, due to the constant C reminder plus they need maintenance. Could we have one of our lively discussions in the pros and cons

SpecialK

jackbirdie - your nebulizer is old school!  I love it! 

Coming to this site and providing any assistance is making lemonade out of my personal lemons, and I might as well help others with hard won knowledge if I have it.  My parents were both in their 80's when they passed - my mom had a degenerative neuromuscular disease for 25 years, and my dad, brother and I all contributed to her care.  Losing my brother in his prime, just two years after my mom, was the hardest of those losses - he was diagnosed with a rare bile duct cancer and was gone within 60 days of diagnosis.  Two months after he died I had surgery to remove a tumor from my right calf, that I had discovered while I was in California seeing him for the last time two weeks before he passed. At first they thought this was a sarcoma, with a super crappy prognosis - like a 20% chance of being alive in 5 years, after they amputated my leg at the hip.  Turned out to be a tumor usually found in the torso (Trvler - near the heart usually!) that was in my calf - benign, but the size of a golf ball.  Very odd.  Thought I had dodged the cancer bullet but was diagnosed two years later with breast cancer.  Surprise!

BB - I have found that my key to getting through this is a sense of humor, and an awesome family/friends.  I have learned to take all of this in bite sized pieces and not look too far into the future - it is actually a good approach post cancer for many - keeps you focused on the here and now and makes for less anxiety about what may happen down the line.

molly1976

I asked my MO on Wednesday when I can get my port out and I still have 9 months of Herceptin left! He said it's totally up to me and he doesn't recommend people keep them in after treatment just on the off chance of recurrence. So mine is coming out March 2016.

I have only 2 Taxols left but I'm expecting the eyelashes and brows to go any time, as everyone says they hang on until the very end or even after the Taxol is finished. Do they give you eyebrow stencils at the Look Good Feel Better sessions? I am going next week.

Jackbirdie

Special- so very sorry for your losses.

I lost my younger brother almost 5 years ago. It was ten weeks from dx to death. I was with him almost every day and he died in my arms. I miss him so much.

But I realize now, that as much as that changed me, and also realizing that in his case there was nothing that could have been done better than what we did for him, I knew nothing.

The questions I would have asked. The demands I would have made on his behalf. Water under the bridge now, but I feel keenly how those who go before us shape us and make us ready for what comes next. Whatever that is.

Jackbirdie

Molly- will you have it taken out in a day surgery, in his office, what kind of DRUGS, WOMAN???

molly1976

ha! I don't know. He kind of gave me the crazy eye for bringing it up 9 months in advance.

DavisD

Hi everyone. I've been a little off the radar. Just barely making it through the day at work with overwhelming fatigue and eye tearing non stop. The opthamologist said the tearing was from scarring caused by the Taxotere. On steroid drops for 4 wks and if it isn't better he's going to "open them up" in the office. It's gotten worse and embarrassing...looks like I'm crying all the time, ha!

My port will be in for another 9 months of Herceptin after my last chemo as well. Getting it out used to be so important to me but now I'm just resigned to how it does make things easier.

Katy, I'm so sorry about the pneumonia. Keep checking the mail:)

Allison-so glad to hear you're going to be ok...you ARE going to be ok!

I'm sorry I don't have the energy to take notes and respond to you wonderful ladies. I did read the last two days and feel like I know what's happening. I'll post my novella of my life when I get some more energy.  Hugs to you all!

SpecialK

jackbirdie - I am sorry for your losses as well - I read about your interesting and challenging life earlier, and you know how hard it is to lose a sib.  He was my only one so I feel like there is nobody left who knew me as a child, he was my older bro.  I also have survivor's guilt - why did he have to go and I was allowed to stay? You are so right about how experiences shape us and change our perspective.

PrincessOfMeh

Chemo brain alert -- I didn't remember that the LGFB makeup workshop was in May, rushed over to the site to check and it's Monday. EEK! Called and tried to get in, not holding out a lot of hope. Will find out Monday morning, one way or another. Fortunately, there's another LGFB in Hagerstown in June and my in-laws are in Hagerstown so if I can't get in here, maybe I can beg the hubby to take a personal day off work to visit his family that day so I can attend there. Can't drive there myself. I'm a bloody menace in a motor vehicle. Which reminds me, I need to get my license renewed. Bet ya that'll be a joy. How in the world do you do driver's license pics when you're bald? I mean, do they let you wear a wig or expect you to strip it off and go commando? Plus, I think chemo's made my vision worse. If I flunk the vision test and have to get my eye doctor dude to sign off on me again -- only to have a bald sumo wrestler driver's license pic with no eyebrows or lashes cause I missed my LGFB workshop -- I'm going to blow like Vesuvius. ka-BOOM. Total devastation.

eheinrich

Diane, I have eye issues as well. My primary doc said I have inflammation in the membrane surrounding my eyes due to the dryness. I'm just using artificial tears. Do you symptoms aside from eye watering?