Starting chemo August 2014
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eileen...my neulasta is 12000 per shot. Its crazy! Fortunately my insurance pays for it but still...
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thanks my chemo peeps! Good to hear from you all, eileen, shirley and Angie. I am okay, your support is so important and helpful. I wish all still suffering SEs would get some relief! Not sleeping is hard on us. I had the jimmie legs all last night, had to medicate, dreaming even weirder operation stuff.
Cassie, people get freaky, don't they? I wshed she would not have done that but maybe she did not have good support, and I sure can relate to the anger, but not cool to take it out on others. gatomal is right, it just Sucks, everything.
Made pizza tonight, easy but good. Got my first Herceptin tx Friday, labs tomorrow. My friend told me that yes, the girls must go, so gettin used to the idea. It will be fine and so will we all. I will share all the details of my surgery, hope to start the day after posting. On youtube, there are many inspiring videos. check out theanncredible, she made me cry, and there is a cute young couple that documents her post surgery trip home post bmx, to her wonderful family. She is awesome! Very touching and comforting, I am headed back there now to gain courage. We are badass women, we got this!
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I got curious about what everything cost so I logged in to my health insurance site...
Neulasta - billed at $5500, insurance paid $3570 and I don't owe anything.
Pertuzumab (Perjeta) - billed $7560, insurance paid $4548
Trastuzumab (Herceptin) - billed $4,371, insurance paid $2,706
Carboplatin - billed $1,822, insurance paid $40
Docetaxel (Taxotere) - billed $4,988, insurance paid $611
Plus all the other injection fees, saline, prep meds, etc. Interesting how much the billing amounts and insurance discounts vary! That is about $24,000 being billed each time JUST for the chemo, targeted therapies and Neulasta.
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I had a high out of pocket deductible. So, I had to pay 20% of those outrageous fees until I made the total out of pocket which was $6350.00 Now I pay nothing until Jan 1st. I have new insurance for 2015. My premiums are $809.00/month. I have no deductible and out of pocket is $1000,00. This was the cheapest way for me to go. Radiation is $50,000 to $60,000. I called and asked. This is crazy. I feel like I work only to pay for health insurance. Crazy!!!
I can taste some foods 60%. Minimal metal taste, There is hope this mouth nightmare will end
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Note of interest= FIRST CUP OF COFFEE IN 4 1/2 MONTHS!!!! Did not taste Horrible.
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Hi all, yeah, the cost!!!!! I cannot even deal. Lalalalala, I can't hear you bill collectors!
Hubby and I had sexy times this morning and he must love me, bald freak that I am! It made me feel so loved and happy. Bald Bippy got her groove on! Hey it has been 25 years for us next year and we still like each other.
Today gettin labs done and then sourcing for ebay again, been gathering loads of recipes too for baking, things I have never made before, feeling creative and energized. Also,want to load up on foods for next week that are easy. Been reading that we should pretend we have Trex arms post surgery, so we do not overdue by reaching, etc. the key is not to try to do too much too soon as it will set back recovery. ha! I can do that.
The BS says the hospital will provide me with the cami that has pockets, and later I can get my prosthesis. Drains sound like a drag but what can ya do? We will get thru it. My recliner is ready and so am I. Let's DO THIS
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Me again! i called my BS as I was freaked out they would do the node thing tracer while I was AWAKE with no anesthesia! We already know it is one node. He said, no, you will be out! Thank gawd. So am feelin better.
How is everyone today?!
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Glad you are feeling better Bippy! I'm Pretty good today. Some SE's (Big D and Nausea and bone pain) but I get fluids and anti nausea iv meds tomorrow so it will get better. I need the extra anti nausea meds every time so she just scheduled them for me ahead of time. Everything is much better than after my previous tx's though. Eating cream of wheat for dinner cause I can keep it down but hey at least I'm up to cooking for my family if not eating with them. Looking forward to next Weekend when I get to go have Christmas with my husband's family. I should even feel good by then. Life is getting better every day!
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If I had stuck to my chemo schedule then today would have been my last chemo! But I'm glad we're waiting a few days so that I'll feel good for Nutcracker this weekend. I've run errands yesterday and today and am feeling pretty good. My muscles all feel tight and sore, like they're shrinking. And my fingernails are starting to discolor and are even more sensitive. I really hope they don't lift or fall off.
Thanks, taxotere. 0 -
Cassie, my nails have black spots too and I tried to paint them and my nail polish fell off in a few hours...I'll try to paint again tonight... Taxotere is indeed the gift that keeps on giving!
Good luck to your beautiful daughter in her recital this weekend. So glad you will be up to enjoying it!
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Gatomal, I love what you said, cancer can keep its personal growth and gratitude, I already had that covered. And I took pics of my boobs before surgery, and at every stage of healing. I have some really ugly pictures of my black & blue boob, angry scars, drain tube, unattractive surgical bra, deformed nipple w/half an areola. Then after the next surgery, a 4 inch long incision where the nipple used to be, more bruising, stitches from inside coming out the incision. And most recenly, my radiation dermatitis rash, the burned & peeling underboob. Not sure what I will do with all the pics, but I have them.
I had a lumpectomy & SNB before chemo, so that part is done for me, but it was really hard for me to lose just that one nipple. I can't imagine losing both breasts. I feel like I was acting like a baby, whining about this when others are going through much worse. My BS did her best to save the nipple, but when the margins were not clear, it had to go. I won't lie, it is still hard for me to look at my "Barbie boob" even though I still look pretty normal in clothes. Sometimes it catches me by surprise getting out of the shower. Bottom line, as Amy said, we are losing an important part of ourselves, part of our identity as women, and it may take a while to come to terms with that, even though it saves our lives. Bippy, I recognize your struggle to "get ready." I don't think any length of time would be sufficient. You are right, you just have to do what needs to be done. I'll be thinking of you as you count down to the day, and looking forward to your updates after. Glad you got your groove on this morning! You go, girl!
I got the node tracer thing done while awake... they injected dye into my boob all around the tumor, including one injection directly into/through my nipple. I've never been in so much pain in my life. I cried, with tears, and cursed at the doctor. My tumor was close to the nipple and close to the surface, so there was no other way to get to it. I hope none of you have to go through that. Then I went to X-ray & got to watch the images on a monitor as the dye made its way to the lymph nodes, which only took about 10 min. That part was painless and pretty cool. I got it done early in the morning on the day of surgery, but maybe some places do it right at the beginning of the surgery, so you can be knocked out. That would have been fine with me.
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Cassie & JustAmy, here is what taxotere did to my nails:
Stripes! I think there is still a chance that they will lift or fall off as they grow out. I'm hoping not.
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strongenough, OMG that is why I called my BS today, to make sure no wakey wakey nip injections for me. He is very easy on the eyes and also possesses a wicked humor. Yes, I a kinda in love with him but hubster approves onacounta his surgical skill
. I told him about this being awake and UNMEDICATED for such procedure, and he told me No, you will be asleep and no worries, ordered me to stop reading the internet. I retorted that he was bossy and I liked it. Thanks for thinkin of me, and your well wishes. My nails are very weak now, had to trim them to zero. Blasted them with nail hardner, clear, hope it works. I have the rings too.Amy, so glad you are feelin better! It makes such a difference, yes?
Cassie, hope you are able to take some pics, Nutcrackerr is so beautiful....how proud you have to be of your girl. I love watchin that on PBS this time of year. It is magical.
Tomorrow am is Herceptin and Perjeta, the dynamic duo! Hoping for no SE
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I have the same pretty nail. I have cut my really short. They are painful but,have not lost any.When they injected that dye for the sentinal node. I was awake. They told me it would feel hot. I had someone in the room hold my hand and then I told everyone in the room how much I hated them. It did hurt but,not for long. When it was done. I told everyone I liked them again. The whole time the radiaoligist was putting in the wire I just kept thinking how I go do a great make over for her and make her look better. It kept my mind occupied. She needs help badly on her appearance.
Good luck to everyone
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Here's what my nails look like right now - can you see the reddish spots? My index finger hurts the most.
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Cassie- my nails look like strongenough's, they still feel ok. My toenails however are so sore! I am hoping they don't fall off but at least it's not sandal season.
I saw my PS today and he said all looks to be healing nicely. I don't have to go back for 6 months. That makes me happy, moving right along. Next week liver specialist, port removal and the Gyno and hopefully I am able to make an appearance at t company holiday party. I haven't seen most I my coworkers in almost six months. Looks like I will be going back to work after the first of the year. Makes me nervous but excited to get back to a new normal. Though apparently my coworker is being pretty obnoxious to my other coworker who just returned after having surgery on her detached hamstring. Accusing her of lying about her recovery and the fact that she's still in pain and just having a hard time. I don't have time for that crap.
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Hi to everyone. I'm hanging in. Had number 6 yesterday. Down from 50 nodules to maybe 4-5 that are hanging on. Doc planning now on maybe 3 more full chemos then recheck. My side effects not as bad as many. No neuropathy...I was already on neurontin and I'm sure that has helped immensely. Of course, still have the diarrhea and terrible and fatigue. I'm in favor of continuing the taxotere even though I was disappointed NED didn't show up for Christmas. We are going to visit in Virginia for Xmas and then Las Vegas with our besties for New Years....live it up for now!
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cassie cat strong enough= I cut my nails really short and they do not hurt as much. Don't know why but,it helps.
Beatmom=50 down to 4 or 5=You go girl!!! Taxotere seems to kill everything. Those 4 to 5 will be history when the drug taxotere is done with them. Best of luck. Enjoy your travels!!!!
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beatmom I love that taxotere is working for you. And you inspire me to travel too! Plannin a vegas trip in early March to celebrate life.
Gettin ready to go to tx, have to tape the ugly xmas sweater challenge on GMA this am. Funny stuff.
Happy Friday all, hoping for no SEs!
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Had a bad am at tx. The smell of the grotesque food in the halls made me nauseated. Then, the nurse forgot to freakin flush my port and HAD TO STICK ME AGAIN. DH is angry at her for it. Fun times.
Goin back to bed, writing this day off.
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Interesting results for a new study about hormonal therapy just came out. My next step is Hormonal therapy andMy MO told me about this study and went to the conference. In San Antonio. I haven't seen him since he went but he told me before that he thinks tamoxifen might not be the best course of action for me (premenopausal and under 40). Anyhow here's The link to the article on BC ORG if anyone is interested. http://www.breastcancer.org/research-news/ovary-su...
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Beatmon, here's hoping the Taxotere knocks out those last few nodes!
Kellogg, that SOFT study is very interesting and I'll be bringing it up when the time comes for me to talk about hormonal treatments.
Bippy, I'm sorry you're having a bad day.
I'm feeling a weird sense of sadness today, and I have no idea why. Just down today. I know it will pass, and being tired might be part of it!
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Hi Everyone,
Have my tattoo scheduled for Wednesday, and start radiation Thursday. Picked up my hormone inhibitor pills today. Decided not to start them until radiation completed. My DH buzzed my head last night #1, so not totally down to scalp. I found I had all these random chemo hairs and started looking really odd as new hair is coming in. Just want it to all grow in more evenly. I kept my nails really short thruout treatment. I kept them polished also with nail strengthened. They are a little sore, but think would have been worse if longer. No discoloring at all, thank goodness. Taxotere was no fun! 3 weeks since last chemo treatment. Feeling stronger every day. Still get tired early. Getting ready for next phase. Should be complete by beginning of February.
This has been a long haul and I know some of you still have longer then I to go. We have been thru a lot together and I treasure the feedback and support. It sounds like a lot of you are getting ready for your next phase, whatever that might be. From radiation, surgery, tests, finishing up with chemo, hormone therapy, delivering babies and more. We are strong women and we will look back at all this one day.
I met a woman today that completed her treatment 2 years ago. She goes by cancer ctr twice a week w her little dog to comfort the people now going thru this. I don't know if I personally would continue to go back to support others vs just moving forward w my life. I think it's wonderful that she does that and I think u have to be a special kind of person to keep giving to strangers like she is.
My younger sister and I use to go to BOCES where my older sister ( with down syndrome) met as a group on Sundays. We would offer our time to help. My younger sister continued to learn sign language and worked w the deaf, signing for college students in classroom settings. My older sister has been gone several years now. She taught us a lot about special needs people. My point is, I still don't consider myself a special kind of person. I think just moving on is probably my next step. God bless those who give to strangers and have that big of a heart....
We are kicking cancers butt!
Cathie
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Wanted to give a quick updated. I just finished Taxol #6 of 12. Fatigue is a bear but I am trying to get as much rest as possible. However sleep does not combat the fatigue associated with Taxol for me at least. Resting does make me feel better. I still have absolutely no desire to eat or drink. I have a routine -- I have an alarm set every 2 hours to remind me to eat small meals. Forgot who gave me this suggestion. But it is working! I keep a 32oz cup next to me to remind me to drink and I try to drink 3 of these a day. It is a routine I have to follow as my MO says I was loosing too much weight. My last two weigh insI only lost 1 to 2 pounds. Total weight lose during chemo (AC and Taxol) has been 31 pounds. With AC I couldn't eat due to nausea, with Taxol MO says I have chemo anorexia. I decided not to take appetite stimulates as I don't want to add another drug to my now home pharmacy :-). Aches and pains, I am dealing with and taken pain meds to stay ahead of them. With this round seems like my muscles are sore.
I have a lot of discoloration. The Onc nurse asked me if I had dark polish on during tx this week. I said no those are my nails. I only had nail hardener and top coat on. Although I have a lot of discoloration on my nails (most of the nails on my hand are dark purples) I have no soreness or lifting. My toe nails look great J go figure.
Quick question: Has anyone experienced sores on their tongue while on Taxol? If so, how long did it last? Did you get a prescription from your MO to address the SE? Any suggestions on how to get ahead of this one is appreciated. The sore is starting to develop towards the back of my tongue. It doesn't feel too bad yet.
Good report, MO says my blood work looks great! Now if I could get my GI tract and fatigue to be "great".
Have a great weekend everyone.
(please overlook all typo's, grammar and if I have told the story more than once as chemo brain is at its best right now -- big smile).
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Cassie, can't wait to hear how the performance went tonight. Again, chemo brain is at it's best so I may have the date wrong :-).
Beatmon, Alright!
50 down to 4 or 5. Go Beatmon,
Go! Praying that your next report will
be that the 4/5 will be gone and NED will be your claim soon! Also glad that your SEs are minimal. I am still too having terrible fatigue but so
happy that I don't yet hae signs of neuropathy.
I think of you often and know you will enjoy your travels and time to
just get away and enjoy life!<?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" />Bippy/Beatmon, Will have to get my hubby to plan a trip to Vegas. We usually go at least once a year and due to dx didn't make it down this summer.
Bippy, so sorry you are having a bad day! Sending you a huge hug.
Catie, love
your honesty and what you wrote was very touching. As your virtual
friend, I do see you as that special type of person based on your post and
encouragements. We will all give back in our own way, it may be through
support groups, staying engaged with bco.org to help help others on this
journey. It can be as simple as speaking the right words, at the right
time, to the right person :-). But we will give back. I love that you remind use that we know what it feels like to go through a journey where the
enemy of our enemy is our friend and we are working together to kick cancer's butt.Kellogg, My MO discussed changing to AI and
Boii am I wordy tonight! Must be the steroids still kicking in
suppressing my ovaries instead of going for Tamaxofen. We just got my ovary functioning test back and
they are still kicking. My MO was
surprised that the results were so high.
She asked if I planned to have any more kids. My answer was a resounding
NO! All my kids are out of the house and I am not starting over. I will live through my grandkids. LoL. We
will discuss more at the next appt and I will bring up this study.
.Hugs all!
-Angie
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Angie, I never thought to tell my MO that my periods have stopped...it seems I always have something to tell her but never got around to telling her that and its been over two cycles...guess I will tell her...I hope you start feeling better soon. I am like you. Sleep does not make me feel rested with taxotere. I slowly feel less tired over the weeks between tx but never rested. I am anemic though and have been even prior to DX. That doesn't help....Only one more treatment in two weeks. You should be on your 10th I think by then. We are getting through. Hugs Amy
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Ladyb and amy, I had the extreme fatigue to, not relieved by sleep. Ladyb, good going with the timer, you cannot lose any more weight! Amy one more? Almost done then. It is so much better when you are out of the chemo loop. My nails are very brittle and had to trim them way back. Also I have those poison lines too.
So, interesting about herceptin and perjeta only infusion yesterday. I will take precautions next time as to smell avoidance (the food smells did me in, just like chemo allover again). I will use a mask, infused with mint or other pleasant aroma, and keep the door shut. It got me from the hallway. Also, i did not dress warm enough and was freezing. Some idiot had put the ac down to 65! It took me hours to get warm.
Only SE so far was very tired, but did sleep well. Hope that is all! I am thrilled to be getting perjeta too, the nurse says lots of bc patients are now getting both down here vs. just herceptin.
So....4 days till bmx and I am ready. I was thinkin about all the young soldiers, or victims of crimes, or people that are disfigured everyday by accidents. I can certainly live a full and wonderful life without breasts. I will allow myself to grieve and not surpress emotions, but, I do not want to wallow in self pity, or allow it to ruin the rest of my days. Yes it will be hard but such is the nature of life. I will be so happy if it stops the beast from returning. Worth it to try! I am by nature a positive person. And this experience has tested me. But i am so blessed with love, friends, a home, access to cutting edge medicine and the very best providers, the list goes on. Today I am moving into acceptance.
And...also, I am pullin out of the drawers all my fugly clothing as to have it ready. Goin to store and cookin up yummy stuff for next week. Getting things ready at counter level, etc. DH is on tap to be my arms! He is the best.
We can do this ladies, do not give up! I am grateful every day for you all and would be lost without your support.
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Bippy, you will do fine. It must be difficult to lose such a significant part of your body but your life is so much more important. By next year this will all be behind you and your new life will be wonderful. You are in my prayers. Love, Jean
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Bipsy - You are a very strong woman! You are going thru and expressing what I would think most people would be thinking and feeling at this time. I think of you every day and want you to live a long and happy life. That is the priority here. You can do this... Good luck this week and stay strong.
Amy - One more! Awesome....
LadyB - So sorry you are having such fatigue and still can't eat. Wishing you minimal SEs and thinking of you everyday also.
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These chemo side effects do linger on, don't they? I'm 23 days past my 5th treatment, with #6 on Monday. Surgery is scheduled for 25 days PFC. My muscles ache daily, my eyes are drippy, my nails hurt, my left ankle swells if I'm on my feet too much and my GI tract still isn't 100%. But I'm also going to be cancer-free after all is said and done and do everything I can to keep it from coming back! That is the goal to keep in mind through all of this.
My daughter dances as the Sugar Plum Fairy today, and I can't wait to watch her. We have lots of friends and family members coming to the performance, too. She is blessed to have so much support around her through everything.
The dancers have a theme each day they're in the theater for warm-ups (wear stripes, twin day, pajama day, etc.). Today is "stand up to breast cancer" and they're all wearing pink. Made me cry when DD told me. I love these girls and guys so much. I'll try to get a picture of them.
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