CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Thank you so much! Your kindness and good wishes are much appreciated, Cubbie2015
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QMC..in your pocket for the biopsy .
Iris ..glad you have a plan in place , and we'll all be there with you , every step of the way ..
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Iris, in your pocket for your Taxol; QMC, for your biopsy.
Iris, what was the oral med MC refused to cover? Sucks that they’ll cover the cost of administering shots & infusions, but not the cost of a pill. Especially since if Afinitor had worked, they’d have continued covering that. I would check the chemo threads for advice on the Taxol (effects & the procedure). Too bad they’re not giving you enough time to get approval for cold-capping to minimize hair loss (but perhaps the dose for stage IV is less than in earlier stages). Basically, bring stuff to read, listen to &/or watch. Be careful to avoid exposure to germs (crowds, especially), since you’ll likely be immunocompromised. Will you be getting Neulasta, and if so will MC cover the cost of the OnPro delayed-auto-injector pack or make you come back the next day for a shot?
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Queenie, it looks like you and I will be at the doctor's at almost the same time on Monday!
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sandy all good questions but no answers
I have no idea how many sessions i will have or when the next one might be
Doc did say the dose would be lo when i asked if i could drive myself, funny as my hair has been thinning lately and i have no answer on why
It wasnt the specicific oral chemo they refused but rather a second one after affinitor failed
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That's crazy that they'd let you have a more expensive I.V. chemo after Afinitor failed, but not a second oral one that has a better chance of working, possibly with fewer side effects. (“We gave it one try and it failed, so we're fine with torturing you and letting you die faster"). Sounds like grounds for an appeal. It's the old Part B vs. Part D conundrum: an oral drug is a “specialty drug" that you don't need to have administered, so Part B won't cover it and your Part D carrier is free to be as cheap a bunch of bastards as they want; but anything that has to be given I.V. at a treatment facility (hospital or chemo suite) is covered under Part B. I went round and round with this about Zometa (covered under Part B because it's an infusion) vs. Prolia (not covered because as an injection, my doctor could give it in her office or I could—theoretically—shoot it myself). Finally, Medicare changed its tune and decided Part B should cover it for all postmenopausal women on AIs—provided it's injected at the chemo suite (even for all of 30 seconds).
GoodRx sometimes will issue coupons (which Medicare patients can use) for drugs at a much lower co-pay than going 100% out of pocket. Had Part B not done an about-face and paid the $5000 ($3700 for the drug and $1300 for the chemo suite & nurse) for Prolia, I could have bought it with a GoodRx coupon for $1200. But if (when, if I live that long) my ER+ cancer metastasizes, they can't do it any cheaper than my $4100/mo. (in)Humana Part D co-pay for, say, Ibrance—even though if I were still on my private pre-Medicare plan I could have used the pharma company's coupon and paid NOTHING. I won’t get into what else is wrong with a health system that still defers to industry’s profit motive…not on this thread, lest others here and the mods jump down my throat.
The hair-thinning is almost certainly the Aromasin—AIs do that by virtue of lowering the amount of estrogen in your body.
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when i was on aromasin for 5 years no hair thinning but when on the afinitor pls aromasin, i had hair thinnng
On the affinitor i was able to get a grant, partly funded by koman that paid full costs, hoping i can find some help again
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Cubbie: so, pocket party all 'round then? And we'll all meet on the CrazyTown Inn porch for a round of coffee/margaritas with Ativan sprinkles afterwards, yes?
Proud: I can't really add anything to what ChiSandy said, other than my endless and supportive (but never gooey) sympathies. I just don't understand ANY of the logic behind ANY of the variants of insurance.
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In your sticky pockets, QMC and Cubbie.
Iris, I hope it all goes well. For what it's worth, I did low-dose Taxol for several months along with Herceptin/Perjeta. Taxol is tolerable. PM me if you want details.
And here, for your viewing pleasure, is a photo I took about a half hour ago....
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And another....
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Definitely, Queenie. Extra Ativan sprinkles for me, per doctor's orders.
Iris, I hope you can find a grant for this treatment as well. Nobody needs financial stress on top of medical stress.
Beautiful pic, Rainny!
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Rainny: thank you for the rainbow; I needed that just now. And of course the pockets are sticky--it's all the sprinkles.
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Beautiful rainbows!
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rainny, thanks for the offer
Honestly, i was not so comfortable with another chemo pill as it just gave thee nasty time to grow, but that is my feeling, will deal with the bills when they arrive and plan for extra upcoming bills, have gotten through it so far
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You all make me not look forward to Medicare ugh. Iris, Cubbie and QMC in your pockets. Wyatt had an appointment with an epiletologist last week. Not sure why it took so many years for neurology to refer us but wow! It's amazing to talk to someone only does epilepsy . I was so emotional after the appointment and it took me a while to realize it's because I have some hope now. Not a unrealistic hope but for a better quality of life for our young man.
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Molly, what splendid news! A better QOL for Wyatt sounds phenomenal. Let us know how it goes.
In honor of the 4th, maybe you'd all like some pie....
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Molly ...there is always "HOPE".....what else do we have to look forward to......like you with Wyatt...I just pray for my disabled Great Grandaugher everyday...
I was with her yesterday and her Poppy (my son) and we were talking about my new Great Grandaugher expected in August.......I said I hope it is agoing to be a boy...I have 6 girl ggd's, and 1 boy.ggs.......lets even the score.....my son said "I just hope its healthy"....I commented..Vince, I never think of that...and he said neither did I till I got one........I said "Vin, that was not a disabled child for 9 months.....she became a disabled child when that asshole Dr. pulled her out feet first instead of doing a C section when he could have....so he severed her spine.....in Utero she was normal......
Ok, done venting, so here is my little sweetheart after winning a Putt Putt contest at miniture golf......she wants to do it all.
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this is Isabella.her identical twin sister...born first......no problem...it was after her delivery that he should have stoppped and thought uh oh C-section this one is coming feet first........no he played hero, and tore her spine...So Grayson is the disabled one..........
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How dare he play God....had her spine torn completely through she would have died........Instead she may never walk....she has come a long way through a lot of rehab, physical therapy, hard work, and a lot of tears..but Grayson has never given up....she always says even when pushed to the max........Mommy, I can do this......and so proud when she does.....but walking "no, but maybe one day".......
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Hope your grandkids sued and got enough $ to help with the extra costs it’ll take to raise Grayson to independent adulthood. When it became apparent Gordy was a “frank breech” (butt first, feet drawn up to his chest), instead of trying to turn him they let me labor to see if he’d descend some more and then did a C-section. A “footling breach” should also be delivered surgically. I know there’s an epidemic of unnecessary C-sections for the convenience of the doctor (and sometimes the mom), but breech presentations are when Cs are necessary.
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Ducky ..I love your photos of the twins ..both are so beautiful..
Molly ..great news for Wyatt !
Rainny ..love your rainbow pics ..and your pie looks so yummy 😃
Cubbie ..thinking of you ..
Hugs to all..
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Oh duckyb, I know what you mean. Grayson is a beautiful girl. I hope she continues to progress. We had malpractice suit against the doctors that failed Wyatt . It doesn't take the pain away but at least it buys us the ability to provide great care for him. Lucy, continued prayers for you DGS.
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Cubbie, Iris, QMC - in all your pockets today.
I've been reading along, but haven't had the chance to really respond. I hope we all have a peaceful holiday!!
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thanks pennsy,got my bag ready, time is 3 pm, since the hospital is just off the parkway, hoping beach trafic not too bad. Got a pal driving me as who knows how i will react to meds, i tend to react to stuff that others are fine with.
I welcome all your thoughts, party harty!
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Iris, in your bag! Glad you got someone driving you this first time.
The ultrasound this morning showed nothing. They can feel the lump, but nothing shows up. They asked if I wanted to schedule an appointment with my BS, and I was like, heck yes. So I see the BS on Friday morning to see what he thinks.
Queenie, let us know how your biopsy went.
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Well, the biopsy's over and done with, and my steri-strips are already sliding off; my husband teases me about being adhesive-resistant. All I know at this point is that the calcifications they were going after today were teeny-tiny....and in the other (non-treated) breast.
Now for the crazy-making time: the wait for my consultation with [local medical oncologist] on Thursday. And brushing the Ativan sprinkles out of my pockets. The bed was a bit lumpy, what with the pocket party and all.
Iris: you did remember to bring your extra-large bag, right? We;ll need lots of room.
Cubbie: now it's your turn--let us know what the BS says?
Pennsy: waves hello!
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Sandy they do have a lawsuit again him.....but as Molly probably knows, it take forever...I just asked my son the other day "how is that lawsit going".....he said "you know Mom....more lawyers, more continuinces.....always more excuses....now this lawsuit is again the hospital where she was delivered (even thought it was not their fault, but he is their employee since he works for the hospital), no more just your own the staff.....but since they employ him they will get hit too.....as far as I'm concerned I want his Ass.....we had a normal child.....he f/d up....only a moron would try to deliver a breech baby that is feet first...or someone with an inflated ego that thinks he's God.....but yes there is a lawsuit against him......
I watched my grandaughter the other day literally carry Grayson, and her wheelchair up the steps..my Grandaghter is 5 ft and very tiny..others offer, but she says "its ok, thanks but I can do this, concerned someone might not do it right.......can you imagine....up and into my other grandaughters house (at a birthday party for another great-grandaughter), so she could change her diaper.........Grayson is 6 and cannot be trained for the toilet...she is always constipated because her "core muscles" control her ability to squeeze to have a BM, and she can't do that.because that is the part of the spine that is damaged.......many times she gets so bound up (even with Miralax every day) that when she tries to go it can put her into a state where she vomits from trying....I just feel so bad for her, and my poor Grandaughter.....
At the party it was a very hot day...her cousin and 2 sisters were in the pool.....my son who will buy whater, do whatever, find whatever it takes to help and make her and his daughter's life easier....bought Grayson a special chair that she is strapped into and you can sit it in the pool, so she can join the other kids....
Molly you know what I mean...thank God you took care of the POS that hurt Wyatt, but your right....all it does it help to take care of all the things he needed and to not put you in the poor house.....Same with Grayson...she needs an entirely new home just to handle her needs, if only to be able to maneuver from room to room through door jams.....special bathroom facilities.....a special car....and what happens when my grandaughter is no longer here....who takes care of her then....unless some miracle happens and they come up with a way of correcting what the moron took from her.....they are hoping "Stem Cells".....but right now, nothing....
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Ducky, I can't even fathom a doctor taking that kind of risk nowadays. What were they thinking?
Queenie, do you get your results on Thursday with the appointment?
Just got my quarterly labs moved to Wednesday morning due to scheduling conflicts. No burgers for me this 4th of July! Oh well, I shouldn't be eating such stuff anyway.
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My PCP messaged back to come in any time for the repeat CBC, since I've been off NSAIDs & alcohol long enough to see improvement if there is one. Due to a snafu, my MO says she never got the bloodwork results that my PCP's office supposedly faxed to her and I attached to my portal message to her. She says we should discuss my anemia in person after she's seen the test results, and that my 6-mo. follow up visit with her is due this month anyway. Next Prolia isn't till Sept., but she will push to have the 2-year follow up DEXA moved up from Nov.
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Cubbie....you wouldn't think so would you.....considering all of Hollywood has C-sections on demand......t
What makes it worse is he was the next on-duty Dr. that morning, and was left instructions from the previous Dr. whose shift was over...it was a woman Dr. and she told the idiot that 16 hours of labor and nothing, and we're delaing with twins.....so a C-section should be done and she also dis discussed it with him....my grandaughter..in labor heard the entire conversation.......he literally forced her to push, till he got the first twin out.....then the 2nd on after about 15 minutes was emerging.....my grandson-in-law saw the feet, and said "wow does this mean a C-section.......he said "no I can do this easily"........my GSIL said as he was trying almost her entire body was out, but not her upper chest.....he was tugging and my GSIL heard a "snap".......he asked what it was, and the Dr. said 'that was my latex glove"..........GSIL was at his wife's head at the time, so could not see lower down.......we now know what the "snap" was.....
They did not find out for about 2 days that something was wrong with her.....she was immediately sent "which my sons Boss who is on the board at CHOP in Philly.......insisted she be transferred........the OB said it wasn't necessary........against the hospital's wishes my son had an ambulance take her to CHOP, and there after a cople days said her spine had been torn, and it was from a feet first delivery..........the rest is history......
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