Who is starting chemo in September 2016?
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Smile, my recurrence was on the underside of my reconstructed breast just under the skin and directly under my original biopsy scar. After my biopsy I had a very large hematoma that burst. During my bmx my surgeon found DCIS cells along the biopsy tract. While I had clean margins, I feel that the cells were likely seeded to create the recurrence. After my recurrence diagnosis of Dcis, I had Mayo review my slides. They found the IDC. At that point we did an Oncotype. Right smack in the intermediate zone. However, with the recurrence chemo was recommended..
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It is so encouraging to read your updates, knowing we are not alone. I had an eventful weekend, so I'll share my experience.
My first chemo was Thursday, Sept. 15. It was a breeze. The bone pain started on Saturday. Thank goodness I started taking the Claritin last Tuesday. I think that helped. Saturday afternoon it hit suddenly. I became very weak. Then my temp was 101.8 under the arm. I was told to add a degree, so to the ER we went. They tested for strep, flu, and something else, but all turned out negative. The doctor on duty said he didn't know what was causing the fever and asked me what I wanted to do -- stay or go home? I told him I wanted to do what was BEST, so he called in another family doctor who said it would be best to stay 48 hours. The white count was not where they wanted it to be, which was probably due to the Neulasta.
The next morning my fever went down but rose again in the afternoon, so they kept me. I was excited about going home today, but they said they're still waiting on the white count to go down from 1500 to around 1100. Then once again my fever rose to almost 101. My bones were hurting last night, so they gave me morphine, which was not fun at all for the first five to ten minutes. That feeling scared me.
I'm tired of lying in this bed. My legs are aching from being so stiff. I'd like to get out and walk around, but the doctor didn't recommend it bc of all the illnesses throughout the hospital. Now a heel spur that I've had in the past is aching up, but I haven't been on my feet. The nurses hooked up a device that massages my calves through the night to prevent blood clots.
Has anyone of you been hospitalized with these issues? I'd like to hear your experience.
I feel for all of you and wish you the best.
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OMG!!!! I think it's happening!! Had my hair up all day. Took it down tonight and brushed it. Definitely lots more loose hair in the brush than normal. This is only day 11 for me. I was hoping I could hold onto my hair for at least this week. Feeling very nervous about this and not feeling so confident.
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Kechla..thank you...I just wanted to make sure my bone pain wasn't odd...I can't complain too much with all the SEs I've heard all you mention but I think I now know how it feels to get hit by a car ..been constant for 2 days with additional ping pong pain jumping randomly sometimes...just in case someone else gets this.
Ware..that is so nice of your husband. He sounds wonderful!
Beachbaby...so that was weird what your doctor said..does he mean some don't finish recommended treatment..is it even an option? I would just take it day by day..you are an individual..not a stat! I am in a great state of denial about the hair loss..it keeps getting longer and when it finally happens I'm not sure I will know what to do..
Cc2016..those oils sound wonderful..I really need to grab some and a diffuser..
Smile..sorry you are having anxiety but how amazing your mom is a 27 year survivor..focus on that..that is fantastic..It gives me a boost!!!
Makeiki...good luck tomorrow..sending positive thoughts to you.
Leydi...the American CancerSociety has a hat and wig magazine I just got...it has cute hats..look at www.tlcdirect.org
All you ladies are in my thoughts!!!
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Speaking of ACS, I just went to one of there free seminars at my hospital today. It is a 2 hour informational meeting about hair, wigs, makeup, etc. So nice and they give you a huge bag of makeup to use and take home. Very generous and all big name brands. I really enjoyed it. Go to ACS website for locations. In all big cities
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I started shedding yesterday so I put a number 6 on the clippers and let my husband go to town.
Before:
After:
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Bagsharon, you still look cute!
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GonnaBe-sorry to hear about your hospitalization. I hope those numbers cooperate so you can go home. It's one thing to be in pain in a comfortable environment, it's quite another to be away from home and in pain. You're in my thoughts.
BagSharon-your hair looks fantastic!
K-hope your treatment went well today.
Smile-hang in there. Thank you for sharing your story. The fact that your Mom is a 27 year survivor gives us all hope.
Lmencken-I get minor pains here and there, hard to tell if it's my body getting older or SE's
Unless it's to the point that it stops me from doing what I would normally do, I don't mention it. I don't know if it's the 12 days of steroids I'm on, or if it's the norm, but I'm feeling great and do pretty much anything I would normally do. I'm 13 days from my first treatment. I am noticing shedding of body hair and a little hair loss, but nothing major yet. I wish I lived closer to an ACS. It's just not worth a two hour drive.
I hope you ladies have a minimal SE day! Do something you love. You're all in my thoughts and prayers.
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Bagsharon--you look great! My shedding is barely starting. Not sure if I can be as brave as that though!!! Hoping to make it until the weekend.
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Way to go Bagsharon! I may be getting closer as the sink fills up and my hair is thinning greatly.
GonnabePoz- I hope that you have escaped and find yourself at home and feeling better! The first thing I did after chemo #1 was catch a cold from my youngest.. Argh! Still trying to get over it!
Imencken -when I later asked my Dr about it, he clarified that most of his patients stop after 4 (with 6 prescribed) due to the SE. In speaking with a fellow patient, I think the most worrisome one is the neuropathy. I have been advised that the fatigue is cumulative, but no one has said much about the other SE so I have been trying to read through some of the group threads that are a month or so ahead of us to get an idea.
Kechla- thank you for sharing! It's always a good reminder that we are all just in the process and will have to be diligent even after we think our treatment is "done".
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Bagsharon - you look great - you've got the perfect head shape for a short buzz cut. Since we are on the same meds, then I'm a week behind you.
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Bagsharon-how long has it been since your first treatment? I'm trying to gauge when I will lose my hair. I can't get much info on how much my insurance will pay for a wig or where I can go, so it may be a while until I sort it out.
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I bought these - a silk scarf (pretied) and this cotton beanie - they are both super comfortable. Getting ready for next week.0 -
smile--where did you purchase these from? I googled Love Lakeside. I got lots of different sites. Very pretty!
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I caught up on my billing paperwork, matching medical invoices against the insurance statements and my own calendar of medical appointments. I worry about folks who don't like numbers and puzzles and record keeping the way I do. Yes, I'm a bit strange. Engineer by education and project manager by occupation. I think it helps give me a sense of control to treat my cancer journey like a project. I can't control those pesky stray cancer cells but I can keep the paperwork in order!
I'm just about to hit $100K in billed costs to my health insurance. Neulasta injection, in case you are interested, was billed at $6,500. My MO had already warned me that it was "the cost of a used car" per injection.
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Leydi--OMG! That's a lot! I just had a conversation with someone from my insurance today. She is a case worker who called me with some questions and she told me all kinds of stuff. She said that some hospitals bill the Neulasta shot (if given there) at $15,000 per injection!!!!! Can you believe that?! The girl I talked to was also an oncology nurse. She told me some stuff about this whole cancer/chemo process that I have never been told before. It was a very interesting almost 2 hour call. I was going to post some of the things she told me later this evening if I can. I wanted to share some of it with all of you in case you didn't know either.
I had to giggle--you keep records just like me!! I'm waiting for an itemized bill from the hospital and doctors so I can start the process of matching that to charges billed to the insurance. I got a random statement from the insurance last week saying they paid out a $2400 claim with no explanation of what it was! No wonder we pay a zillion dollars for our health insurance!
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I have only posted a couple of times here but since I have a little time right now I will.
Today is day 12 and I am feeling remarkably well. Day 4 and 5 were rough. I had to leave work on day 4 after throwing up - despite the anti-nausea meds. Spent the day trying to sleep and popping Tums like candy. Only threw up twice but felt like poop for about 2 to 3 days. Fortunately I only had to miss that one day of work and was able to muddle through the rest of the week. My other side effects haven't been horrible and I'm probably lucky that way. I guess the worst is that I've developed a few canker sores in my mouth which makes eating a bit painful so I go rinse my mouth with biotene about every 30 minutes. I haven't noticed food tasting any different, but I would sure love to eat some without pain.
The past week, despite all of this, has been incredible. My son swore into the Army Thursday (he is in college now and will Commission as an Officer when he graduates), my niece got married Friday and I was able to see most of my family and had a wonderful time. Sunday was my grandson's first birthday party and then, afterward, the very best surprise imaginable! My daughter who is in the Army and Stationed 3 states away - who I wasn't expecting to see until Christmas - surprised me by showing up at the house. Talk about water works!! I can't tell you how happy that made me. I didn't know how much I needed that - and so did she. It's been tough on her being so far away through all of this so far. She's just barely 19 and still my baby. So I got to have both of my babies home and we are going to the coast for a night before she has to go back to Colorado Saturday.
Despite everything, I know I am truly blessed. Just gotta get through this little spot I've gotten into. A year seems like such a long time to deal with this, but I know it will pass and I will be healthy again and stronger than ever. But right now, screaming obscenities at random intervals seems acceptable.
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seq24 - Amazon
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leidl, my insurance was billed $5,458nper injection, and I thought that was outrageous. In Europe they actually monitor the WBC, and prescribe Neulasta to those who need it, because it is expensive, $300 (!
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I'm starting to see the insurance benefit forms also. No actual bills yet from hospital team for the chemo treatments, should be anytime.
The first treatment day had a $7K charge to insurance, I assumed that was for the Herceptin and/or Perjeta. I was confused that one of the other days in the first round had two billings of several hundred dollars each for "chemotherapy" on it, when I only got IV fluids, or IV fluids plus Neulasta. The hospital has a financial person on their support staff, I may wind up having to ask her to explain what is being billed for what. She enrolled me in a program to mitigate impact of the Herceptin and Perjeta copays, I haven't seen paperwork yet as to actually how that will be applied but I got confirmation from the drug company of the enrollement. Either way, just a matter of time before I hit my insurance cap I think.
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Into day 6 in round two after treatment last Thursday. Overall fewer types of SEs than the first time. Slept a ton on Sunday. Some minor pains from Neulasta, took one Alleve on Saturday but otherwise just let that go. Had some D yesterday, took a couple of Imodium during the day and waiting to see if that recurs or not. Had a feeling of nausea yesterday afternoon, took one of the Rx pills. Not very hungry yesterday or today but otherwise coping. Compared to first time, i didn't get the face flushing, zits, face peeling or leg/hand cramps so thankful for that.
Went into work today, and got sick at work for my first fulfilled nausea episode - oops. Thankfully I made it to the bathroom. Took another of the Rx, came home, and went to sleep for a while.
Still challenged to get in all the fluids, even harder on days when I'm sleeping so much.
Port was still not working to produce blood flow when I was in for IV fluids yesterday. They're going to try again with their "CathFlo" agent to clear it for the next round, and then decide whether to do a scan or possibly replace it if it doesn't clear enough to work consistently.
Best wishes to all
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Forget August & September...I now have an approximate port surgery date (10/5 or 10/6) and a chemo start date (10/11). I was so relieved that my oncologist agreed to letting me have next week as a recovery week. All this assumes the cellulitis specialist gives me the "all clear" tomorrow so I can complete my last IV infusion & get the PICC line removed on Thursday. I'm petrified, but, trying to look to on the bright side, I'm blown away at how great your wigs look!
I was so proud of myself because I'd made notes as I read your posts. I'd crafted a long, personalized response on my Kindle Fire when a Facebook Messenger note popped up & I lost everything when I closed it. Imagine Macaulay Culkin's face in "Home Alone" and you know my facial expression.
My silence doesn't mean that I've not been following y'all. I'm saddened to read that some of you have faced some serious challenges. I'm so very sorry. Sending healing thoughts your way...
Lyn
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Just got a nice insurance denial letter for the neulasta ..after reading what it costs...I hope I don't tank amd need it if they won't cover it!!!!!
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Is there an appeal process, Imencken? I'm scared to ask, but how much is Neulasta, ballpark?
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Lmencen, so a few days before 1st chemo, I get 2 letters from insurance, dated the same day, one denying coverage, the other -approving Neulasta. So I called them to straighten it out - didn't want to go to hospital only to find out the approval was the mistake. Turns out, they rejected it, issued letter to both me (in the mail) and my doctor by email. The MO's office called them, challenged the rejection, explained medical necessity (WBC and that fever hospitalization etc) then they approved. Please call your MO's office - a nurse should be able to handle it. I would have had a $80 co-pay, except since my 1 night at hospital and surgery was billed at $75K, I have maxed my out of pocket limit, and didn't have to pay. This is why insurance costs so much and health care system is overblown. If you have time to read this piece, it's really interesting. http://medshadow.org/first-person/does-every-cancer-patient-need-neulasta/
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Hello ladies normally I'm sleeping by this time but tomorrow is my day.9/21 1st day of chemo..I thought today I would have a chance to rest..been going and going all day finally getting my chance to rest. Hoping for the best tomorrow I was told I will be there for 7 hours 9am to 4..ugh...rough..receiving TCHP.
My husband took me to Barnes and Noble and we got a couple of books to pass the time..grateful to him he is really stepping up to the plate.
Hope all is well with everyone.else.
Thanks
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my first day was yesterday and it was a long day. I went in pretty nervous but everyone was so kind and helpful. I wish you the best of luck today!!!!
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Good luck hahly
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seq24 - I view all the SEs as "the chemo is working. I'm killing any cancer cells that are hiding out in my body and these SE are my proof. I view my hair loss as my body telling me it is fighting for me". My husband also tells me daily that I am beautiful and my hair is not what makes me beautiful. I hope you have a cheerleader in your life. It helps a lot!
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Hi all - is there anyone on this thread that is on the weekly 12 week Taxol/Herceptin protocol or is it better for me to just post to the weekly taxol thread. On the weekly thread, their is little activity and we are all over the place time wise. I would like to post with others in my time frame. As I read your posts, I see that my protocol has a different severity (lighter) than many of the posts here.
I admire all of you as we take this path forward.
M
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