TRIPLE POSITIVE GROUP

ElaineTherese

cjs -- Glad to hear that your treatment is effective; sorry to hear about the diarrhea and the fatigue. While I was doing chemo, I quickly learned where the bathrooms were everywhere, from work to the local supermarkets.

kae -- Ugh about the insurance problems! Hope that gets resolved soon and you can begin your treatments ASAP!

kae_md99

thanks elaine and cjs.. i feel like crying but i have to wait till my kids are done with homework and atleast be in bed.. will see what happens tomorrow..

SpecialK

kae - my pharmacy/medication coverage was not billed and did not pay for my chemo, it was billed as medical treatment since it was administered in a doctor's office/oncology center with its own in-house prep of the infused drugs (the buy and bill you mentioned above). Is it possible that your oncologist's billers are sending the insurance billing to the wrong area of your coverage?

Suburbs

kae_md99, I am very sorry to hear this and look forward to reading very soon that everything is resolved in your favor. With phone calls, messages, return calls, missed calls, emails, logins, websites, insurance and financial matters, it's a wonder anyone has a moment to focus on treatment and recovery. The admin of the process is not fun. Everyone is cheering for you.

Then we get to the treatment after the agony of waiting and staging. I am just 14 days ahead of you. My next tchp infusion is in 7 days. I was told that the hair loss would be like clockwork on day 14 to 17. Indeed. It's falling out in clumps. I was prepared. The gastric discomforts have not really surfaced. The skin rash and the steroids to treat it have left me drained. The worst was day 5 of a dose pack when I had 2 hours of sleep all night. The nose bleeds have been manageable. My sense of taste is nearly gone. So far, it has not been too bad. I have been on the treadmill everyday inspired by an earlier post. 6 days a week will be my new benchmark. That's my two week reconnaissance report back as you prepare to start

Keep us posted and best of luck.

kae_md99

specialK, yes you are right, that is what my HR said, it is an infusion/IV med and my insurance should pay for it.. so today they will appeal it to my insurance, my oncology center tried billing my insurance company and pharmacy to no avail.meanwhile, my oncologist is trying to get me approved for another infusion center. i am exhausted and i have not even started chemo yet. suburbs, we are diagnosed almost the same time, and same stats and same treatment, i am glad you have been doing pretty well, sorry for the nearly gone sense of taste..

kae_md99

cj, the person who tried to get my pharmacy pay for my chemo drugs ( she works at my pharmacy now, Optimum RX) was actually an oncology nurse before. i thought she will be able to deliver yesterday since she has backround in chemo but they still denied it:(

cjs9473

I am surprised that the pharmacy would deliver the chemo. I always see the doctor right before my treatment, and they don't prepare it at the treatment center until afterwards in case he's decided to change anything (he lowered my TC a couple treatments ago because of my issues with diarrhea.) Every insurance is different, though. Please keep us up to date. I'm pulling for you!

kae_md99

yes, it is an injectable/Iv medication and i get in in an infusion center just like what specialK mentioned in her post.. im going to call HR at 10 am here in Ca ..i thought i am done with waiting and i am finally able to start treatment but im stuck again..

kae_md99

so ladies,i just got a call from my MO's office that i will be admitted to the hospital tomorrow for my first cycle! i think this is a strategy on my MO's part to get me started. because then the insurance will have to pay for my first cycle right? i dont know anymore.. i am to exhausted and emitionally drained..i dont even have a bed yet. i pack my stuff and wait for them to call me... as soon as a bed becomes available then they call me.

cjs9473

I don't know all of the ins and outs but it sure sounds like your doctor knows what he is doing . Best of luck to you with your treatment.

kae_md99

thanks cj....

kae_md99

if i get my cycle on a friday,will i get my suceeding cycles on a friday also? i am on my tchp,6 cycles every 21 days.t

kae_md99

for those who iced their fingers and toes,did you do it only during chemo infusion with taxotere and carboplatin? or so i need to do it also during herceptin and perjeta?t

Tunegrrl

Kae, it is just a Taxotere thing. And in my experience it is not necessary to keep fingers in the cold mitts continuously. If you get too cold and it hurts, it is okay to pull out for a few seconds here and there. I scrolled on my phone

Best of luck!!!!

SpecialK

kae - yes, you will most likely receive chemo on the same day, unless you have a delay at some point, then it would be 21 days from that day. Icing is for the taxane, I started a few minutes prior to the infusion start and stopped while they were switching from Taxotere to Carboplatin. I received my pre-meds (Tylenol, Pepcid, Decadron), then the TCH, in order. I was treated prior to the approval of Perjeta, so I didn't get it.

cjs9473

Thinking about you, kae! Hope everything is going according to plan for you today.

kae_md99

thanks ladies,i am really impressed with my MO, she got me in right away. just to get me in , i am in a 2 bed room where they got my iv in but i will transfer once my private room is clean.pharmacy is doing my meds right now. so i have a room with tv and wifi and an awesome nurse and an aide. my MO just told my nurse that she is attending to patients right now and she will come in the afternoon to see me..we dont know if i will be getting the neulasta tomorrow bec my pharmacy might notapprove it at once but my MO told me it usually tkes a few days for blood counts to go down so we have a few days to fight the insurance. i will ask her if i can have the neulsta before i get diacharged tomorrow.i feel i am a victim of insurance politics/money conserving strategies and it makes me sad . i hope this does not happen to other peolpe. sorry for typos

ElaineTherese

Glad to year you're getting your treatment today, Kae. Hope you can get your Neulasta before you get discharged!

Taco1946

The insurance hassle that many of you are experiencing is awful! One more frustration and anxiety to add to the list. I'm so sorry. And as we undergo another transition in health care delivery, I personally feel it will be the pharmaceuticals and insurance industries and not patients who will be the winners. Hang tight all of you.

Kae, sounds like a pretty plush first treatment. I got to sit in a reclining chair next to the bathrooms (a mixed blessing as I was pushing my little poll around) for over 5 hours. Glad you will be getting a private room, as you probably won't sleep much. My fitbit said I slept only two 1 1/2 hour stretches last week.

Treatment 3 for me today - good visit with the doctor. Told me to try to analyze whether I was really was experiencing nausea or heartburn. According to her, the nausea medications are the ones that are the most constipitating. I had bought Nexium yesterday and think I will act like it's acid reflux until I am actually throwing up. Last Sunday was really debilitating with stomach cramps and I really want to avoid that.

Bad news is that it is 12 weeks of weekly Taxol and herceptin before I go to the every 3 week, just herception. I am glad to have the dates however so I can begin to plan. I am enough of a control freak that not being able to fill in my calendar more than 2 weeks in advance was bumming me out. My sister often comes to AZ from Boston as an "end of winter rite of passage." Then she goes home and gets ready to go to Maine so she will be happy to have some dates too.

Be good to yourselves this weekend. Hope everyone got a holiday Monday - my infusion nurses mentioned that they didn't.

kae_md99

done with cycle 1.unfortunately i wont be getting neulasta tomorrow.my wbc and RBC count are only in the low normal so i dont have much reserve.my MO, as a back up also got me request for auth for neupogen. because if i dont get neulasta tomorrow, i cant get it anymore for this cycle.for neupogen, i will need to inject myself every 7 days and it is not time sensitive like neulasta. i will call my MD tomorrow and ask her if the 300 ml of neupogen is enough,if it is then i can just pay for the first shot. i googled it and its ony 300 usd versus the 480 ml which is 2k plus. i figure something (300 ml) is better than nothing..i have very low immune system and i get sick easily and i have to start stimulating my bone marrow already.. this sucks bigtime...

kae_md99

did anybody here used neupogen at one point?and if so how much mg did you get?ty

kae_md99

oh the 480 mcg is i think in the 500 dollar range so it should be ok...i think i can close my eyes and pay for the first dose.

Tunegrrl

Kae, i used neupogen after each round. Injected myself daily for seven days, and yeah it sucked. I was very brave! But it was 15 minutes of psychological work each day that i'd have rather avoided. Those with supplemental private insurance in Ontario get neulasta, everyone else gets neupogen. It is covered here but i remember noticing it was worth $200 a vial, not sure how many mg.

Someone in a thread here commented they dripped a drop and thought, "there goes $20!". Gave me a chuckle. It is totally pricey stuff. I kinda doubt a single shot'll do you a lot of good, though. There is a clinical trial here comparing 5,7 and 10 day use. 10 days is equal to neulasta, i read somewhere. But 7 is more common, reducing side-effects and expense. Some people here have gone with nothing at all, but that's a litttle scary. I hope your insurance gets sorted soon

cjs9473

Hi , kae - so glad you were able to get your first treatment. I'm sorry to hear about your insurance and the Neulasta. Insurance companies can be so maddening! I'm so grateful I have insurance but when your doctor has come up with a treatment plan that they think is going to be the most effective for you and the insurance company says "too bad" just to save themselves money" I see red. When insurance tried to deny my treatments, my husband said that I would get the best treatment and we'd pay the bills off ourselves, the hospitals cant come after you if you make attempts to pay. I guess that's what these insurance companies are hoping people will do

kae_md99

Tunegrrl,i will pay for the first dose. which will buy me and my MO 7 days ( since the shot is good for 7 days) to sort things out with the insurance company..with regards to my second cycle of TCHP, my MO will admit me again if need be if by that time nobody is still willing to pay for it ( my insurance or the medical group i am under at).btw, i was able able to sleep for 6 hours even with the steroids, have been too stressed and exhausted fighting my insurance company. i try to relax and not think about it but the fight leading to my first cycle was just too much. i iced my toes and fingers but i completely forgot to use ice chips! with the regards to cold caps, i did not use it anymore since i was on call with the "hospital", meaning my bags were packed but i did not know when i will start since i did not know what time they will call me to go there ( it depended when the bed was available).they called me at 7 am but treatment started at 2 pm...i will try to relax as much as i can and just let the TCHP smash my tumor. thanks ladies.

Suburbs

Kae, congratulations on completing round 1 of TCHP. Good news.

For the group, I have a question as I was not prescribed neulastin. I had read about it hereand asked about it at my first appointment. It was not something they do. Should I be pursuing this further? I wonder if my blood test results were such that it was not deemed necessary. Any thoughts you could share will be most appreciated.

I read here often but do not post a response always; however, I wanted to say that I appreciate every post and thank everyone. For those of you who have stayed on the board, after treatment especially, your insight is really comforting and valuable to me. I imagine it would be easier to simply move on and so again, I am grateful to everyone here.

kae_md99

suburbs, i believe the neulasta/neupogen is standard? correct me if im wrong peeps. they get your cbc the day of cycle and they do it again day 8 and day 15( atleast in my MO's office).for neulasta, you should get it the day after. for neupogen, not really time specific. your white blood count will take few days to go down and my MO thinks that a few days, in my case since i am having insurance issues should not matter. however, you really want to get it asap so that you can already start to stimulate your bone marrow to make new cells. my wbc one month ago was 5.5, the low normal. i was too stressed that i forgot to ask my level yesterday. remember,that chemo destroy both cancer and normal cells, make sure to ask about it and be on neutropenic precautions, wear masks, wash hands well, etc...not to scare you and im sure it will not happen to you but i have seen wbc as low as 1 in cancer patients.hope this helps!

cjs9473

Suburbs, I know somebody whose mother wasn't automatically given neupogen but instead they waited to see if the white counts went down and then gave injections. Perhaps that's what your MO does as well. I would definitely ask them more about it.

SpecialK

suburbs - whether or not to give WBC boosters like Neulasta or Neupogen is up to your oncologist's philosophy and experience. Some, like mine, use these drugs from the outset, others wait to see if they are needed, since the cost can be prohibitive and sometimes not covered if given without first determining demonstrated need, they come with some severe side effects for some patients, and they don't always work.

Kae - keep in mind that the ranges for blood work are based on adult males. It is not unusual for women to be at the lower end of the range.

kae_md99

thanks SpecialK, and thanks for the clarification on the use of neulasta/neupogen. thank you to our old timers who opted to stay and give sound advice!love you guys!!!