Who is starting chemo in September 2016?
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So, first chemo down, 5 more to go! WoooHooooo! So far so good. Was tired yesterday due to the 50mg of Benadryl given in my pre-meds. I was hoping for some steroid energy, but not to be. Had no problem falling asleep, but then woke around midnight with serious nausea. i tried for 20 minutes to suck it up, but then decided this was stupid. Took a Zofran and within 10 minutes felt so much better. Hoping the day continues in the same vein. I am trying very hard to drink tons of water. 4 quarts is what we are shooting for, right? Have not developed metal mouth thus far but am playing it cautious. Didn't eat a couple of hours before chemo. Chewed ice like a mad-woman during Taxotere and Carboplatin drips. Only using plastic utensils just in case. Plus rinsing out mouth alot. So far so good!
Now, for insurance crazies..... I have a wonderful medical team, so thank the Goddess for that. They deal with my insurance company and I am just grateful. My insurance company only filled my Zofran for 20 pills with a refill for after I'm done with chemo. Hahahahaha! That is just hilarious. Will have to sic my team on them for that. Then they denied me Neulasta based on the prohibitive cost. They caved!!!! Now, I'm interested in those who are on TCH with Perjeta, Hahlyn and mislil in particular. How did you get insurance to pay for it? They have outright rejected me for it based on the fact that there is just one clinical study being conducted now to show that there is some benefit to those who have adjuvant cancer as opposed to those who have neo-adjuvant and metastatic cancers. This drug gives us an increase in 4% survivability which is huge, in my opinion. Well, we are haggling with them, but there's no way we will be able to pay out of pocket as it likely will cost from mid 50's-100 thousand for 5 doses. Have as yet to get any bills or statements but will find it interesting to find out what everything costs.
Have to say all you Ladies are rocking the shaved heads, bald head, and wigs!
Truly! We all are beautiful and this is just but a blip in our journey of life. The cost of shampoo and conditioner is going down. Looking forward to having my kids doodle on my head soon. Noticed one of my 16 year olds doodling on her arms as practice. Isn't that sweet?! Just looking for the positives and silver linings in all of this. Hope everyone else is able to do so.Lastly, I have to admit I am exhausted by trying to keep up with everyone who has reached out to me. I feel so loved and nurtured by all these lovely people. Truly buoys my spirit. But, I just don't have the time or energy to answer everyone personally. So a friend who went through cancer 5 years ago told me about a website that was really helpful for her. It allowed her to write a blog, including all those who wanted to be in the know, as well as to set up a meal train. The website is lotsahelpinghands.com. I think I'll set up a blog and see how it goes. Have to say my friend who set up a meal train has been wonderful. So many friends have signed up. We have to get another freezer to put all the leftovers in for when we don't have the meal train going. Please reach out for help especially for something like this. People want to know what they can do and this is perfect. You can let people know about allergies, likes and dislikes. The biggest advantage is that it takes the burden off of my husband's shoulders...which is huge. While I'm getting all this support, he is not which I guess it is the way it goes. Guys don't like to reach out for help so this certainly helps him out in a big way.
That's all for now. Best wishes and blessings to All!
PEACE!
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My out of pocket is 11K, which I'm pretty sure I'm going to meet this year. I met the 4K deductible before I even had the surgery. I'm trying very hard to get all my treatments in before the end of the year so I that I don't have to start the deductible and out of pocket all over again. I have a job that I can easily work from home but my office manager insists that I come into the office which is set up like a call center: a lot of small desks crammed closely together. There is a lot sneezing and coughing and not a lot of covering of mouths. (Oh, it's just allergies says the woman who has children in daycare and then proceeded to tell me I should take elderberry supplements.) If I miss even one chemo treatment because of my jackass coworkers, it could cost me another 11K or 4K at a minimum. This is why I don't give a flying leap how my hair looks. I'm friggin' owning my cancer. I even set up my own stall in the bathroom. I want EVERYONE to know that I'm battling a serious disease. I'm not depressed, I'm angry.
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for all the Canadian ladies
There is an organization here in Canada called Victoria's quilts. They provide handmade quilts to Chemo patients. One of my neighbors is involved with them and ordered 1 for me, it is great about the size of a single bed it comes in a quilted bag with a pocket to hold book, water bottle etc. They have a website and there is no charge for them . The website is::
Just did google search and there is a Victoria's quilts in the US as well.
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Hi all!
I am doing much better, I get tired and have to nap, but otherwise I am feeling pretty good. After last week, I am very grateful for that!
I am shedding a lot. My hair is think and in my opinion, my hairdresser left it much too long on top when we cut it off but I am losing it. I guess it will just take a while for it to be noticed. I ordered a scarf from Good Wishes and My USPS says it is out for delivery today. I am glad it will be here before I really need it. My friend has also ordered a couple for me that should be here soon. I do not know if insurance will cover a wig and now with only one income, buying one is out of the question at this time. My husband is a rock star and says that the scarves are sexy and he married me, not my hair (I'm not so sure lol) he doesn't care if I have a wig or not. As with many of you, my treatments will go through the holidays and I am concerned about how I will feel to celebrate or go to family gatherings. I have a 9 yr old so Christmas is still a big thing.
Sorry, I think I am rambling a bit.
I have not heard from my medical team that there are any issues with getting approved for the chemo or other drugs and I did have Neulasta so I am guessing that it was approved. It is a long story but since a couple of weeks after my stroke last year, I have had state insurance and while often a pain in the behind, they haven't denied anything as far as I can tell.
Best wishes for a good day for all
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Angela--as to the wig, please check the American Cancer Society in your area. They give free wigs to cancer patients. I bought a wig, then found out about the ACS program. I went to their office and they gave me a beautiful human hair wig (they also had synthetic). The Pantene company has a program where people can donate their hair then they have it made into wigs and donate them to the ACS. It's a great program. This wig is much nicer than the one I paid big $$ for. The wig shop was selling human hair wigs for $3000-$5000!! I had both wigs cut to match my own hair style.
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ThatFox - What a wonderful surprise and Love-filled weekend! It reinforces why we are all fighting! And if you want to scream obscenities, I'm right there with you!
Hahlyn - I am also on TCHP and my first round was 6 hrs 45min from start to finish. Crazy to think that I sat in that room that long! My infusion room is pretty bare-bones, with 4 chairs and a tv, but it's worth the trade off to me of being only about 3 miles from my home. I packed a chemo bag with a blanket, snacks, and stuff to help pass the time. Round #2 on Friday and I am going to try the ice thing during Carbo & Taxotere in hopes of saving my taste buds this go round...
DennyJ - Keep up updated! Hope all is well!
Ladies that have had the Neulasta shot... what were your WBC's at? My Dr mentioned that I may need it at some point, but not sure what numbers would call for it. I have been extremely lucky so far with my insurance and the only denial I've had was the initial surgeon that the radiologist asked for and that was because they were out of network and I was referred to a surgeon within the network and since then, everything has been approved. I did have to get individual approval for the Perjeta (due to the exorbitant costs, I think), but that was also approved.
Lmencken - I would definitely have the medical office resubmit if they feel it's necessary!
Keep fighting the fight Ladies! Thank you for being here!
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HI Everyone!
I have been MIA for a while...but keeping up with the thread...glad everyone is doing well and handling them pesky s/e's like troopers.
Well, last time I posted I was going off about my dang port..lol...last Monday they checked my xray and it showed that the first surgeon did not put enough catheder in..and did not position it correctly..so they had to take the old port out and put a new one in...so my first surgeon is fired..lol....I am now finna fight with the hospital reguarding paying for 2 port installations...I am not paying for the first one!
I did my 2nd Chemo treatment last Friday and everything went smooth..my port finally worked...I am learning that my bad days are day 1 and day 2..then when I get the neulasta injectection, even though I take the Claritin..i still get bone pain for two days...so I am not back to being me til day 5 and day 6....I have experienced the D problem this go round.. and like MBella said..i too am losing hair on the va jay jay..lol....I still have real bad heartburn after treatment for a week...dr. called in Prilosec for me. I got my Blood Results back today and I am Negative...so like MBella also said..this cancer ish is just a random assault on my body.
MLMSC...I have 2 more bi-weekly treatments of A/C..then I start the 12 weekly treatments of Taxol..so I will be able to join you on the Taxol train next month...lol
VLH...congrats on the October date...finally you can join us on the chemo train lady.
Leydi..I too match EOBs with my appt. dates...I have already hit my deductible and out of pocket...the prices these hospitals and doctors charge are astronomical..lol
Seq...Glad your first round of chemo went well lady...glad you brought up the case worker...b/c last Friday when I got home from chemo..i had a msg on my voice mail from a case worker with my insurance...I was learry about calling her back...but now I see this is protocol with everyone..i will give her a call back this week.
Miss..sorry to hear about your port issues lady...I understand and feel your pain...hope yours can be resolved more easily than mine.
Glad to see everyone is doing well and still trucking!...F Cancer!!
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nayda985 glad you checked in..Happy to see they rectified your port. Yea I would fight tooth and nail about paying for that first port.
Outside of all that glad to hear your doing okay.
Hahlyn
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Thanks Hahlyn
I am off Friday and the hospital billing will be my first phone call...b/c I am not paying for 2 Port Placements..lol
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makeiki3, in my case the TCHP was approved neoadjuvant based on clinical trial results for early stage HER2+. Initially I probably would not have qualified based on the size of the area from the first scans. But when I had an MRI, it sized it as 2cm which is qualifying. For better or worse lol - frquently in this process I would have been happy to go straight to surgery and have it cut out. But with the HER2+ having effective drugs available, and only for insurance in my case in a neoadjuvant setting, that's what they recommended. Since this is my second round in this game, probably throwing whatever there is that can be effective does make sense even if the chemo process is a lot to deal with.
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Today was the first day i took off work for SEs, after getting nauseated/sick yesterday and not eating, did not feel up to coping with things at the office this morning. Not sure about tomorrow. I felt iffy most of the day and didn't eat much, but no nausea episodes thankfully - maybe just with the Rx keeping it at bay as I have felt queasy off and on. The Rx anti-nausea is probably helping but when I'm feeling this way, even swallowing the pill and keeping it down can be uncomfortable.
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It seems especially cruel to suffer both constipation and diarrhea during a treatment cycle. I am afraid to treat the first too aggressively, knowing the second will kick in soon. My heinie hurts.
My insurance can be difficult to work with but the only thing they have outright rejected so far is the cost of genetic testing. Still waiting for that bill to come in as the genetic counselor said that the lab they use guarantees affordability and that I would only need to call them and say that I could afford to pay X and they would agree. We will see.
I am only having my cell counts done when I show up for chemo, no tracking in between. My insurance must have approved the Neulasta use preemptively since I have gotten the injection pack after each treatment so far.
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Question...is neulasta done with every treatment?0 -
My WBC is only done right before my chemo and a week after to make sure I bounced back. For me, Nuelasta is being done with every treatment. I'm trying to get my MO to give me the pod so I don't have to come back into the office the next day.
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Hi ladies, my WBC is not checked in between infusions. Neulasta was sent home in ice pack - I injected it myself 2 days after infusion. I wish they would have tracked my WBC, then I'd know whether all the pain from Neulasta was for a definitive reason, not just preventative.
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My WBC is checked the same day I have treatment...last treatment the chemo nurse put the pod on my tummy before I left...the next day..i didn't even feel it inject itself..i just heard the alarm and knew it was starting..i actually didn't think it worked..til the next day when I had bone pain..lol
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I had the pod put on my left arm. I have my blood checked before infusion and I was supposed to have it checked at one week, but I was so sick, I didn't go. I know they did it when I was in the ER and that they spoke to a dr at my clinic so I am guessing it was sent to them. They never called to ask why I didn't do it.
My hair is really coming out now. I think I am going to buzz it. I have the scarf from Good Wishes that I have been wearing so I might as well not have to look like I showered with a Sashsquatch.
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I went to pick up my Emend from the pharmacy, and they are out of stock. I hope they give me some in my iv tomorrow!
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YLH..yes appeal process was outlined in the denial but arghhh..really we shouldn't need to deal when we have enough to get through right!! Hoping it doesn't come to that.
Smilethru..thanks..yes I will try the easier route of having MO call if or when I need it....will chat with him when I get my levels checked next week!. Thanks for the article too!!
Hahlyn..hope you did well today !!!
Ware..that's a good way to think...SE telling you that this is getting everything out..I like jt..my friend had radiation recently to his brain..he did not have any side effects..he was like..I hope they actually turned the machine on..haha! Guess we don't have to worry about that!
Anyone have continued burning tongue/ metal mouth..mine has never gone away..I feel like I constantly need candy or gum or food or jello in my mouth because my tongue is soooo gross..I hold cold water in my mouth to try and sooth it..I use biotene...I scraped my tongue too but I may have this ongoing...I can't complain too much but my taste is so off...certain foods I can't even think of eating...I had it starting day 2..now it's 7 days..constant icky tongue. This is my longest SE so far but in the scheme of things it's not too bad but I really hope I won't have this for 3 months of treatment..
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MFalabella, if I were you, I'd call your MO. That's a very expensive and very specialized drug. I wouldn't count on your center having it available.
lmencken, 5 months? How many treatments are you getting? We have similar dx but I'm only getting 4 which equals to about 2.5 months. Sad to say, but I still have nasty tongue 2.5 weeks later but it's not as bad as it was earlier and I'm grateful that I don't have thrush or any open sores.
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Hi, I'm a lurker stopping by to say hi. Just completed my profile here today. Boy that was sobering. I knew the stuff in my head, but writing it down (clicking?) was hard.
Just want to say thanks to everyone for being so forthcoming in your posts and sharing your side effects and solutions. I feel like they will be a big help.
Chemo is scheduled to start Sept. 29. Having trouble with my liver enzymes, so I guess it depends on how they behave themselves. Not wanting to delay....the waiting is the hardest part. (Right now, anyway. I'm sure not when I'm experiencing the SE.)
My username is short for CANCER IS NOT THE BOSS OF ME!!!
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Welcome, NotTheBoss! Love the name. Sorry you had to join our club where we seem to talk endlessly of pain and poo.
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I've been a lurker here...first infusion was on Monday after weekend delay ( frustrating).
So can we talk bone pain? ( from Neupogen, twin sister of Neulasta). I've tried Claritin, Tylenol, Epsom salt bath, walking....nothing is working. Any other tips?
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Well I started on 7-7. My team chose to start with chem, reassess after the first 4 rounds of DD AC. I will likely have a mastectomy then or go on to 12 rounds of T. I also was diagnosed with Multicentric. 5 tumors altogether. I havent heard much about anyone else with multicentric.
I did very well on the first two rounds. I was able to work all last week and two days after the port was put it and I had my first round of chemo. I consider myself pretty lucky. Wishing you all the best.
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Thank you. What can be more exciting to talk about than pain and poo, other than hair loss!
Trying to find humor....somewhere.....
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Welcome beebs2704- The only thing I have found that worked for me was hydrocodone. 200 mg of Motrin just wasn't cutting it and my MO didn't want me taking more. Nevertheless, I upped it to 400 and it still didn't phase the bone pain. See if your MO will write a prescription for it. It lasted and I didn't have to go unmedicated between doses like with the motrin. Good luck, it passes in a few days. Hang in there!
My WBC is not checked between treatments, only the day of. I use the pod on my stomach after each treatments that self injects 27 hours after treatment.
Welcome nottheboss and mojo56.
Lmnecken- I too have the nasty taste, all the time. Water tastes salty and metallic as do most other drinks. I gargle with salt water, use biotine as well as Listerine Zero. I had one minor mouth sore and that's it thankfully. However, my tastebuds are very off. I, like Bagsharon, only have to do 2.5 months of chemo. Makes me wonder if they are treating it aggressively enough.
AngelaKS-my hair is coming out a lot more too. I finally broke down and got a wig from ACS today as well as a few more wraps. I've debated doing a buzz on it, but I'm not there yet.
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Just a quick update. Infusion #2 tomorrow. Had labs and dr appt today. Blood work was good--onlythe white count a little elevated because of Neulasta. They are cutting the steroids in half thank goodness and totally eliminating the Compazine because of the reaction I had to it before. Hoping to have the same results of no side effects this time around.
And the bad news--my hair is coming out. I've really noticed it today. Very upset about it. I'll never be ready for this! I don't see how you ladies are getting through this part with such a positive attitude.
I am so far behind in reading everyone's posts. Been very busy this week catching up on yard work, house work, paper work, and well just work in general. I am so thankful I've felt well this week and have been able to do it.
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Hello All!
First day of TCHP treatment yesterday..it was a long day...I was the last patient to leave. Today was okay...just tired and leg joints hurt. But otherwise I'm okay.
Wanted to know if any of you have to give yourself shots after treatment for 5 days for WBC? My first shot is tonight at 6...
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ACS -I only buzzed some of it. I got most of the last long parts but the hair all over me was making me crazy lol
Hahlyn - what kind of shot? I had Neulasta pod put on the day of chemo but nothing else.
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crud..so sorry Bagsharon and ACS74..totally missed that typo..didn't mean to scare you..3 months..not 5!!!!
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Hi AngelaKS
The shot is Zarxio.
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