2012 sisters
Comments
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Tazzy. Thank you....yeah I knew it was a possibility but WTH Instarted losing mine almost from day one of taking L. ...L also gave me diarrhea, nausea, vomiting, weight loss, anxiety attacks, depression....the works....yip....the gift that keeps on giving, but I'm on anti-depressants and anti-anxiety meds now....no nausea, vomiting now and I am enjoying my food once again. I kind of liked the weight loss, but, of course, I know this is not a healthy way to,lose weight. Now , I'll probably be bitching here about my weight gain...lol
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Oh my goodness, guys, the hairloss on Letrozole is bad news! I'm going to be on Tamoxifen for two years, and then switch to Letrozole for the next three years. It will be really hard if my hair has to fall out again! NO, NO NO! IT SUCKS!!! Tazzy, I'm looking forward to your onc's answer - tell him there are quite a few women here who would like to know.
Shock2behere, yes, all the hair everywhere on your body will most likely fall out, even your nose-hair. I saw it as kind of a weird perk that I did not have to shave my legs/underarms during chemo, and that it took much shorter to get ready, because there was no hair to be done - LOL! In my weak, exhausted state during chemo I was barely able to take a shower and towel myself dry, and I often had to take a rest after that. Good thing I had no hair then.
For those of you losing your hair, I've read that some people use a lint roller once it is shaved to get rid of the loose stubble. Initially my stubble was hanging on, but eventually I was totally bald. My hair started to fall out in the 3rd week after chemo #1. I had the itchy, sore scalp for days beforehand, and my hair felt dry and dead. Once it was shaved, the soreness was gone.
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Halfcan- are they denying it because you haven't been on another form of treatment first? I work at a hospital and have fought my own battles since diagnosed. Make sure you question why and what they are denying. Do NOT let them tell you NO without a reason. I was originally denied my reconstruction and the BRCA testing due to my age. I have fought every claim that they denied AMD have had every single one overturned and paid.
Hope everything works out -
5 days post TC and I have no added side effects. So for me it's been: no taste buds, lack of saliva, fatigue, a yeast infection and oh my...an itchy scalp. I've scratched the back of my head so much I have scabs in spots.
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Mrscich- how many treatments do you have to do? Lack of taste would be great, that way I wouldn't want to eat. When I first started the Femara I had a lack if appetite and now that I've been on it a while I've gained back my weight that I had lost.
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{3} hi, sorry but glad you are here. before i found this site, i was looking at the livestrong site and found www.crazysexycancer.com its great too, its all about healing with nutrition and all kinds of good things, she had to as there was no treatment prtocol for the kind of cancel she has. check it out! and the very best to you..10*3*12
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I used packing tape to get rid of the stumbles. Not sure why I did. Guess it was patchy and weird looking. I still had some stubble left when the white fuzzies started growing. I think I still feel some of the stubbles there and every once in a while find one that has fallen out. Not sure what the deal with that is...
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Halfcan - not sure how often your chemo cycles are. Mine are every three weeks. Neulasta wasn't ordered for me prior to initiation of chemo, wasnt until they had to postpone my last chemo due to low neutrophils. The insurance company said they needed proof that it was medically required, my oncologist sent my last two ANC's (absolute neutrophil counts) and it was approved within four business days. So, even if they are not approving now pre-chemo as no evidence of medical requirement, don't write it off for later as the situation can change.
Take care, and yes we will all be in those big pockets!
Hugs to all -
Chrisrenee, my MO recommends 6 but said she would be happy if I do 4. Even though things taste different or not at all, I still eat because I'm trying to see what tastes good. Lol
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Mrscich- I will be with you in spirit on your next treatment. We can rock bright pink wigs while we are singing and dancing to Girls Just want to have fun! Haha
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halfcan I have it from two oncologists, one our good friend from NS and the other my MO, that Neupogen is just as effective as Neulasta. The only difference is that yes, you don't just get the one injection per cycle but either 7 days during the cycle or as the standard here in Vancouver as I understand it, day 2 or 3 then every other day for 7 times. Yes it is subcutaneous but it is done here the first time at BCCA then either I can do it myself or go to a drop in. One of my best friends also had Neupogen about 5 years ago and said is was easy. Websister, every province is different and it may be that halfcan's extended medical thinks the same way as BC Pharmacare. I do have to say that even though it took awhile on the phone yesterday, between BCCA sending off for the approvals, MSP/Pharmacare and the Victory Program, it was approved in one day. I am still a bit unclear as to how much we will be paying before the FairPharmacare deductible kicks in but it does not look too bad and halfcan, with your extended it may well be paid fully. For sure you will be approved one way or the other! Websister, my chemo is every 2 weeks because we have chosen the Neupogen, otherwise it would be every 3 weeks. Is this what they call dense dose because it is closer together?
Thanks again halfcan for the heads up about FairPharmacare and although all the information was given to my in my packet at BCCA on Monday, the fact that my husband signed up online Friday when you told me about it, made it that much easier.
marian -
I had Neupogen for 3 days after every Taxotere infusion..12 in total. Chemo was every 3 weeks. Thank goodness I have a great benefit package - that's just added anxiety.
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Tazzy -- so glad that I brought back some good memories for you. Now, about the hippy thing, I have a dear friend who still dresses like a hippy except her hair is not quite as long as it was 40/45 years ago. She is the nicest person you would ever want to meet. Unfortunately, she too has cancer, not breast cancer but Stage III cancer of the Vulva **shudder** but she is not letting it get her down.
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Thank you all for your awesome input. I got approval from Pharmacare this afternoon for the Neupogen so now to get private ins. to agree. 7 injections each cycle 4, 5 and 6. Trying for first 3 cycles too. Ins. pays 100% except $30 per script if they decide to cover it. Phew! Can see why they don't want to cover Neulasta. LOL.
Drinking lots of water to get ready for tomorrow. It's an afternoon appt....will let you all know how it goes! Good night all and hugs all around. -
Since we are on the topic of friends, what do I say to a close friend who tells me lately its hard to talk to me because I keep changing the subject back to me? I try not to, but its so hard to here about stresses at her$200k+ job while I'm telling her I am feeling social. I guess I want clear enough really as my DH said. I needed to tell her I was suicidal for two days, not just dreaming.
I guess I can't show up for some people add much as if like right now. She's my sponsor in my recovery program and over the years my course friend... But boy am I struggling. Partially because I get squirrelly around my clean date anyway. Add of midnight October 6th I have not take a drink or drug with the intent to get high or change how I feel.
I keep trying not to take ambien, but break down and have to. I try not to take ativan, but have to. My friend reminded me we take things as prescribed in times of illness. So I am starting to stop fighting myself and focus on it. After all, its not like when I had my appendix removed and was OK in three days time.
I hope number for goes easier. Being home is nice and I have the exercise cancer group I signed up with in the afternoon. I'm excited.
My DH is happy we got to spend some time with his family... And I'm SO HAPPY that he's happy... Good I love this man.
Nite ladies. Passing for minimal SEs all around. -
Test
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Well its 230AM here on the Mississippi coast and Im wide awake....been so since before 1. Blah. I think I might see a nap in my plans for the day today.
Juneau, I'm sorry your friend/sponsor seems to be coming down hard on you and you're having a rough go of things lately. However, I loved to read that you said you "WERE" suicidal and not "AM". 💓 You are an inspiration to many of us that you can continue sobriety while dealing with this roller coaster ride of BC. I hate roller coasters. 😣
Hoping you all have minimal SE's today and can have a good day while being positive. (((((Hugs))))) to you all. 💪 Here's some muscle too. 💘 -
I also had Neupogen for 3 days after every chemo. Pharmacare wouldn't pay for mine, we shopped around, and Costco was the cheapest at around $200 a shot. It is a very small vial, so this stuff is extremely expensive.
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Juneau,
First of all: you may be one of the strongest people I "know."
You are pushing forward through some of the worst days of your life and keep moving forward. Not everyone evolves as we do, even our closest of friends and supporters. I can appreciate her honesty, but she has to appreciate that what you are facing is as monumental as your shared challenge: past, present, and future. She doesn't get it.
Keep on keeping on, woman. We're here for you 24/7/365!
Scorch
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Halfcan I might be repeating what others have said but in the beginning when I was getting neulasta in order for it to be covered I had to go to MSK to get it so every other week I schlepped into NYC on a Saturday just to get a shot. I'd that a possibility?
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Good morning everybody. Hope this morning brings better things for everybody. Thanks for the response, liefie, I've been waiting for the stubble to disappear, thinking that maybe I might be the one in a million person who didn't actually lose my hair, and that I jumped the gun shaving it all off myself! Hahaha. I also said to my breast surgeon "I'm having a harder time dealing with the hair loss, than the loss of my breast!" She told me that was fairly common, not everybody gets to see our breasts, but our hair is a pretty public item. I'm finding that it was easy to pretend (to myself/others) I wasn't sick when I had my hair - but then, if I felt too sick, I just stayed home. Now it's out there for everyone to see, and that makes me sad.
Juneaubugg, sorry your friend doesn't understand, right now "it's all about you"... right now, all your energy needs to be for yourself, and getting well.
Also, I want to apologize to all who responded to my last posts, that I did not acknowledge - I am having a little trouble carrying so many conversations, and if I get back when things are long past, I'm not sure if it's proper to try to respond at that point. I read everyone's posts and have been getting lots of comfort from them.
As for the insurance/Neulesta shot thing - I am hoping I don't get a HUGE shock from my insurance co. - I have already received two of those shots, and the bills haven't come through yet. I will probably be through my 3rd round next Tuesday before I see any paperwork. Crossing my fingers that I don't have an enormous bill, my insurance is not that fabulous, I pay 20% of all that goes on.
Finally feeling like a human being though, not gonna ruin that. If I have to pay them $100 a month forever, that's what I guess I'll do.
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Warning: Tamoxifen rant
It's bad enough that we have breast cancer. And it's bad enough when, to treat it, we have to become chemical sponges in order to kill off unhealthy cells (not to mention good ones). But this Tamoxifen is for the shits.
I acclimated to the fatigue, I got over the vertigo, the nausea was barely perceptible, the joint pain comes and goes. But now I learn that before it shrinks tumors, it can actually make them grow. Enter the last three weeks of increasing and debilitating pain as a result of the lesion on L5. Fucker. I cant walk. I cant clean. I can't do a lot of things. But I can be miserable.
And I am as miserable as it gets right now.
Screw you, Tamoxifen! Shrink the tumors already, don't add to my misery a fifth time.
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I wonder how Pharmacare decides? Why no to you and yes to me? I sure don't get it. I don't know what the Neupogen shots cost but Neulasta is $2600+ per injection here in BC! I was told Pharmacare doesn't ever cover it so neither will my insurance. No chance to jump to NYC...I live on the west coast. Lol. Geez scorchy...I didn't know that drug did that!!! Rant all you want to! Take care today everyone. I am off in awhile for chemo #1. I got my big pockets on to carry all the well wishes I have received from so many wonderful ladies here. I'm nervous but I want to get things moving along. (((hugs)))
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Halfcan- good luck today on your first treatment. We will all be thinking about you.
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halfcan and liefie, back to the FairPharmacare thing (halfcan I sent you a PM too) i don't uderstand either how you liefie would not get it? How long ago was yours, as my understanding is that based on family income, FairPharmacare kicks in when the family deductible is reached. The Victory Progam does what they call co-pay and that happens right from the beginning. The VP woman did tell me that each vial costs $200-$212 so approx. $1400 per cycle but again depnding on the deductible, we pay only a fraction. And yes I was told the same as halfcan at BCCA Vancouver, Neulasta never covered. But if it works just as well and is paid for, Yay!
Will be thinking of you halfcan today.
Scorchy,rant away, we are here for you!
juneau, you articulate what you are hearing and feelling so well and thus I hope that you can just focus on yourself and what you need and I already see that for some people, the fact that we are what they may perceive as self absorbed is not that at all and they need to get over it!!!!!!! This BC is all absorbing and thank god for this site!
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Seems hair is the topic of the day. I had mine shaved off about 2 weeks after my 1st treatment. The irritated scalp came about 4 days later.
Today I showed my 1 month PFC fuzz to a co-worker and God love her, she said "You have a beautiful head, why cover it up?" It made me smile. Of course I put my turban back on because I have the AC cranked up to help combat the power surges. (That's what a friend of mine calls heat flashes lol)
On the hair note.. I would get SO IRRITATED when people would tell me "Not everyone loses their hair from chemo." Oh really? Is that why my MO AND the Nurse both told me..."You WILL lose your hair"? But hey, what do they know? -
halfcan, and anyone else heading to the BGC - good luck!
scorchy and juneau, and anyone else needing it - big giant hugs!
I get my nuelesta shots at mskcc in LI and the woman told me they are $6000 a piece. Holy crap! Right now i'm struggling with authorization for a second muga scan they want me to get. Imagine I'll get an echo instead if they don't get it to go through. Anyone know if one is more accurate than the other? I'd rather the echo so I'm not radioactive for 2 days!
And to those fearing round 3 of AC - today is i think day 9 since my 3rd round and I feel mostly human. Surely a bit tired, but have an appetite back (almost with a vengance!) and feel like i'll mostly make it through the day like a normal human being. So there is hope!
Websister - thinking of you and hoping you're feeling ok.
Wishing everyone a day free of SEs and blues. Big hugs!
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Morning all. Welcome to the newbies-sorry to see you have to be here but I see that this great group of strong ladies has helped you feel at home here.
Chrisrenee I know what you mean about the feelings you have listening to the various treatments and side-effects some have to go through and feeling like you are "too lucky" to be here. But like you, this wonderful group made me realize that we are all fighting our own individual battles with this stuff and everyone is here to listen to our problems or celebrate any victories we may have. Everyones situations have varied so much; some have had more complex surguries, some surgical complications, some extremely disappointing pathology, some healing issues, some reconstruction issues, some family/friend issues, some emotional issues, some support issues, some chemo or radiation issues, some medication issues,some work or insurance issues and the list goes on and on all as a result of our BC diagnosis. There isn't one of us in this group that can't put our name to one or more of those issues which makes us all worthy of being here in my book.
Juneau as for your "friend" I'd have to make it all about her for now. People like when you ask about " them" and they can answer so ask her lots of questions about herself like have you ever had a doctor tell you you had cancer especially while you were in recovery? Would you like to go get a new buzz cut then go shopping for some nice new scarves-I'll drive then we can go get lunch afterwards? Give her a quick synopsis of the SE's of the BGC and ask her what she would say have been her worst experiences in the last couple months. Might ask how good her $200000 job's health insurance is and if she has ever had to test it to see what all it really covers. Ask her if she could imagine having to go to that job after a month or two off sick & bald.Think she'd get the point even though you made it all about her? lol Unfortunately once the ah ha moment ends with their friends cancer, it seems everyone else slides back to their everyday life thinking we "think about it" too much.
Tazzy I thought the same thing- miss those days.
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Insurance cartoon, so true it's not funny:
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Had Taxol #5 yesterday and only 7 more to go and then Herceptin for however long I'm supposed to be on it.
Yesterday the sweetest man (79 yrs) was there for his first treatment and was getting Taxol. OMG he had a reaction to it. I nearly started to cry I felt so bad for him. The nurses and doctors were all there with him immediately and he was getting the best care until the paramedics came to take him to the hospital. Everyone in our room was so quiet you could hear a pin drop and everyone felt so horrible for what happened. This disease just keeps giving in so many ways.
I'm getting ready to drive to the hospital right now for my echocardiogram. Hopefully it shows my heart muscles are doing good. Just part of the norm now, I guess.
I think for me anyone who has BC in any form should not feel guilty for being here. Unless there is someone you know personally who understands what you are going through and you're able to talk to them regularly, all of us can relate to the feelings you are going through and can answer questions or just be here to listen anytime.
Take care everyone and hoping everyone has none or so mild you don't notice SE's.
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