Starting Chemo in November 2017
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According to my dad's friend who is a nurse in an oncologist office they do get paid a very good fee for each person that does Chemotherapy. NBC even did a story about how oncologist make their biggest profit by buying chemotherapy drugs at "wholesale" and "selling" them to their patients(this includes the premeds and all). So in a sense they do get a kickback. My oncologist drives a hundred thousand dollar car so he is definitely making good money. I was not being offensive but truthful. For each person that does chemo they get a good profit for each round so maybe not a kick back from the pharmaceutical companies but certainly from someone. Chemo shouldn't be a one size fits all approach but sadly that's how it works. I have gotten a second opinion but they were out of network and I can't afford to pay out of network. I love the nurse but the doctor seems flighty at best. When I had my first meeting with him I was told carbo and Taxol and then when I pulled my records up online it had been changed to AC+T. It sucks to feel like a number and a dollar sign than to feel like a human. I have tried to be honest with my doctor and explain each thing I experience but the answer has simply been here are steroids and here are anti nausea meds none of which have helped.
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Blair2 - yes, first treatment today. I'm lucky. It was completely uneventful. Long day... At the hospital 7 1/2 hours with slow infusions. Very tired and ready for bed. Thanks for asking! We will see how the next 2 weeks go, but I am cautiously optimistic. I plan to keep working full time throughout this process, so crossing my fingers for minimal side effects.
Crystal... I work in a large, nonprofit, hospital. There are laws against behaviors that compromise ethics, and kickbacks are punishable by federal law. Additionally, my father was a surgeon. My husband, and many friends are doctors and nurses - including some oncologists. I am asking you to stop, and I'm telling you your accusations are offensive to me.
I have nothing more to say. I honestly wish you nothing but the best. Peace to you.
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I am not a first grader so do not need to be "yelled out" as that offends me. Everyone is entitled to their own opinion and as I stated I didn't mean a kick back from the pharmaceutical companies. When a big news stations does a story and exposes how chemotherapy treatment is a lucrative "business" there has to be some truth to it. The oncologist by the drugs cheap then mark them up so yes they do make a lot of money off of our treatment. It's obvious when someone is telling their doctor that they are having heart problems and all from the drug yet the doctor not only still pushes the drug but won't even reduce the amount. I am no longer going to comment and will seek support elsewhere where people aren't belittled and berated because of their opinions. I am sure I am not the only person who feels they are just a dollar sign and has seen first hand how lucrative of a business pharmaceuticals can be. During my time as a vet tech I often ordered the drugs and seen how much they were marked up....why were they marked up so much?....to make a profit. Oncologist aren't paid "great" so they make a majority of their money off of marking up the drugs they prescribe us. It's simple economics.
Best wishes and be blessed.
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we respect your opinion Crystal, but you should remember one thing, a lot of sisters here, this section, looking for positive ideas and successful experience to resist the chemo SEs. I know you are suffer and sad and I'm sorry about that, however if you have any problems in your heart it would be appear on echo test, if you feel your heart not good does not mean your heart is really not working well! the doctor should make echo test and other test to evaluate your heart and how it's work during chemo.
about the business of drugs, this is another big issues, we can apply same concepts for everything in our life and feel no trust for anyone offer products because they want to generate money! its not good in general but it may happened.
I do not know why you confirmed the problem in A drug? if you are right and sure about that, ask your doctor to give you FEC drug, a lot of research said it has same characterize of AC but with less cardiotoxity . check with your doctor. hope you will be fine .
for all, please help me to prepare for chemo, I will start on MONDAY and I have no idea how I will be ready as much as I can, how to control my fears and which information is important to know, I read articles here but its not help enough to me, more more information make me crazy!
thank you
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Crystal...I am so sorry to hear this. I would think they would have different chemo for your triple negative. I have a good friend who went through this in 2011 - she was triple negative and the only drug she was administered was Herceptin. Definitely talk to your doctors. You should not be having these horrendous side effects. There are so many "helping" agencies in Cincinnati. Have you checked around in your area. There is one here that was started by a BC survivor. They will clean you house every couple of weeks. Bring you food etc. It's worth checking in to.
Blair...Hopefully, your December side effects won't start until after Christmas. When I was on your cocktail, my side effects usually didn't begin until the 5th day or so. You should start seeing hair loss in another week. Mine came out pretty rapidly.
I had my 3rd Taxol infusion yesterday. Even though my infusion is 1 hour 15 minutes, It's always a 3-hour ordeal with vitals, seeing the doc or NP before going to the chemo room and sit some more before they can get to you. It was packed yesterday. I was a bit more woozy yesterday from the Benedryl, but I had taken an Ativan before I left, so that may have played a part. I was OK to drive home. I feel good this morning. Have a 4:00 pm appointment to get my wig. Hope I remain feeling well. You just never know when something hits you.
Hope
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Hope99- I'm her2+, so a different chemo regimen than you. First round yesterday. They put a 5 day anti nausea drug in my IV, along with steroids, and Im on a three day oral steroid to help with side effects. First infusion was long, but easy. We even went shopping at JoAnn fabrics afterward!
Last night, face, neck, and chest flushed red like a sunburn, and a bit puffy. Less red this morning, but more puffy. Little bit of a headache, but not bad at all. Really, I feel pretty good.
I'm keeping a log of effects so I know what to expect each time, and can notice and track changes. My doc & nurses are very reassuring and keep emphasizing the arsenal they have to manage side effects these days.
Relax and trust your medical team.
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Meowmmy....So glad your first infusion went so well! Let's keep it going
You are very correct with the information to Crystal about kickbacks etc. I was the office manager of a radiology practice for many years....so, I know what you are saying is so true.Crystal...Did you not have an echocardiogram before starting your chemo? If not, I am very surprised, as those drugs do affect your heart.
Hope99....Have you had your appointment with a navigator nurse? Before I started chemo, I met with someone for about 2 hours the day before. You will be given so much information -- some of which is scary! But, remember that doesn't mean the side effects will happen to you. Get a good night's sleep before your chemo. I think you will be pleasantly surprised that it isn't all that bad.
Hope
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Agree with nonahope about a good night's sleep beforehand! I have a prescription for trazedone for sleep. It's like a miracle! I slept great last night, and no grogginess this morning. Highly recommend it. Sleep is our friend! It helps make everything better.
Nonahope... Did I see you are in Cincinnati? I grew up on the West side ( a Mercy girl). My husband was an east sider. Both UC grads. I work for Mercy Health in Toledo now. We've been up north did over 20 years, but still have family in Cincy. It's a great city.
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I see we are all being women locked in a room and getting a little catty today. Lol.
Meowmmy- enjoy the good feeling for a couple more days. I am almost on the same regimen and I felt great for the first 3 days. Infusion on Wednesday and Sunday was my first down slide, lasted until Wednesday. And by noon Wednesday I was pretty much back to myself. Still having a little bathroom issues but other than that nothing else.
So I am after some TMI this morning. Is it just me or does anyone held have freaky BM??? Meaning it just doesn’t look right at all. No big D it’s normal but it don’t look normal at all. I’m wondering if it’s connected to what I am eating or it’s just supposed to look like that. Since I’m throwing (hushed about) stuff out there, I never got mouth sores but I did get some little bumps all over my face, some on my neck and scalp, then in my bikini line area, they have pretty much healed now, but this morning I have one on my lady bits...ouch! Seriously???
It’s amazing how treatment is varied so much from clinic to clinic and state to state. I switched oncologists 3 times until I found one I was comfortable with, so for those of you having issues with your doctor, switch...it’s worth it in the long run. I’m in Clearwater Florida and our clinical support system is amazing here. We have CapSS which give us free support, they have classes for makeup and hair, they have yoga, counseling and just pretty much anything you need. I’m sure they have something in every state. On this site look up the “freebies” you can send away for free stuff like care kits and hats and even enter for trips later on. LIVESTRONG is a company that offers help, they do free classes throughout the country at local YMCA’s. Help is out there you just have to dig for it.
On a somber note, saw the update on my insurance app last night and just about had a stroke!! 54,000.00 for 1 chemo treatment. OMFG! That’s more than my car! I’m going to be worth about a million dollars when this is over, wonder if I can insure my self for that much like the stars do???
Take today to be a little less serious and enjoy
Tina.
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Meowmmy....What a small world. I'm on the East side of Cincy. I have lots of friends from the West side. I worked with thee girls from the west side....two were Seton girls, the other went to Mt.Notre Dame. One of my grandsons graduated from UC. Another grandson and granddaughter went to OU and another granddaughter went to Point Park in Pittsburgh. Another granddaughter is a sophomore at Bellarmine, in Louisville. I have two granddaughters, a freshman and a junior at McNick High School -- my alama mater. Where did you husband go to high school? I think McNick and Anderson were the only choices in my area.
My oncology group -- OHC -- has space in a building in the Mercy Anderson Hospital area. It's only 20 minutes from where I live, so very convenient. They've recently renovated Mercy Anderson...it is beautiful!Hope
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Tina...I have heart failure every month seeing my EOB from the insurance company. What makes me even sicker is the little bit they pay the docs. It doesn't matter what they charge, Medicare will only allow so much and then it's forwarded to the secondary insurance. It doesn't pay to be a doctor in this day and age. My doctors that I worked for were at a good age when they were in practice....now retired and enjoying the money they made at the time.
Hope
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hope99-
I know your first infusion is Monday, couple of tips. Drink tons of water leading up to, the day of and the days after to flush the chemo out of your system. I was drinking 8 bottles a day. Take stuff to keep you busy and comfortable. I made a blanket to take, fuzzy slippers, took a book, my iPad, water, snacks, my iPad and a set of headphones, (I watched Netflix the whole time). I had some mints and ginger candy in case I got nauseated. They gave me lunch (vending machine sandwich and chips) but it was bad so I will bring my own next time. For 54,000.00 they should of fed me steak and lobster. 😂 i literally took a whole bag of stuff because I wasn’t sure what I needed. Next time I bringing a little pillow too, they didn’t offer one, but they did have heated blankets. They have TVs but you had to share and I don’t share well. I wanted my own.
I know I’ve mentioned it but I will put it out there again. I’m using an app called Chemowave, it lets you put in how you feel and each symptom and it tracks it so you can remember how you felt and when. That way if I forget I can go back and make sure I don’t schedule work or things to do on those bad days. It also helps me see that I’m improving as the days go on. Kinda like seeing the contraction is almost over in labor only a very long contraction.
Tina
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nonahope- I don’t have Medicare so they can pretty much charge what they want to my insurance. All I keep seeing is my 10% copay when it’s all said and done!! Eek!
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Mom4gma3 - you’re cracking me up with the BM issue. Since I flushed myself out pretty good with that horrible laxative, I’ll probably stuff up again. No telling when I go again. Ok, we can’t let the Cincinnati girls have all the fun, I'm a Floridian too in Lakeland. Is the Moffit Cancer Center your treatment facility? The one here is associated with it. It’s suppose to be good, I sure hope that’s true.
Hope99 - I had cold feet by my 5th day, and found a heating pad felt good on low heat. Just a suggestion.
Meowmmy65 - glad your first day went well and best of luck in forthcoming days. Make notes by time and event.
My biggest fear to pre treatment was how my heart would react having heart disease, and I’m happy to say I’m breathing just fine. Because I felt funny after my surgery (and I believe it was the anesthesia), I was so afraid I’d have breathing problems with chemo. I had an EKG prior to treatment, my oncologist (who is just a baby at 33), listens to my heart every time I see her. She writes down everything as she goes over the lab results and is very detailed. Love her for that and she’s good answering all my questions, so she is A+. Very, very professional too. I was a bit skeptical being assigned to such a young doctor, but I like her a lot so far.
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blair2 - I’m not at moffit, but I am familiar with there reputation and they are amazing. I am a dialysis tech and I have a few patients that go through them, but they are in Tampa and I didn’t want to make that drive. I’m at Susan Cheek here at Morton plant. 5 min from my house!! My dr referred me to Florida cancer specialists twice to different doc and each time it was horrible. I felt like cattle being ushered in and ushered out. So I had a friend who suggested the onco I have now and she is awesome. I have friends in Lakeland and I go there a couple times a year for holidays not to mention I drive through there for Disney which I do about 6+ times a year. I told my mom I would have to get a rascal next time to make it through the park. Living near the water is definitely good for my healing, that and the lovely weather.
Tina
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I had my second treatment on 11/29. The first 5 days everything was about the same fatigue and brain fog wise. Day 1 and 2 I felt a little unsteady but had good energy in both mind and body. I was able to go pick up groceries and do some laundry. Day 3 - 5, I felt horrible, like the flu with brain fog.
They gave me a Sustol injection for nausea this time. Insurance had not approved it for the last treatment, and I only got Aloxi infused. This time both. New side effects this time. I had trouble sleeping the first two nights, and I was constipated for several days, both which can be side effects of Sustol. On the plus side, diarrhea and the horrible gas pain that goes with it didn't start until day 7, but it is still lingering on day 10. I guess the constipation kept it away. I might take Imodium proactively starting day 6 next time. I also did not have the bone pain this time. I took 1 decadron a day on day 4 and 5, which is what they told me to do when I had bone pain in round 1.
My hand rash returned right on schedule on day 5. It runs from my forefinger knuckle and follows the hand webbing up to my thumb knuckle. This time I also have a big red area that looks like a burn near the infusion site that showed up with the rash. I haven't called the onc because they gave me prednisone last time to get rid of the rash. I hate the stuff. Makes me absolutely nuts! I'm applying aloe, coconut oil and steroid cream to keep the burning sensation under control.
10 days out, and I am much more tired than I was last time. I will get spurts of energy, but the tiredness comes back fast. My next treatment is Dec 20. Christmas Day is going to be awful. I told my mom I would rather we get together in the afternoon. It is highly unlikely I can drag myself to her house that morning.
I had my 8 week follow-up with the plastic surgeon for my double mastectomy. He released me to do any kind of activity I want. I was so looking forward to that day before I found out I needed chemo. Maybe someday I will get excited about upper body resistance training again. Since I am BRCA2 positive, I need to have ovaries and Fallopian tubes removed next year, and the plastic surgeon said he would be glad to coordinate with my gyn surgeon to do some fat grafting at the same time to fix some of the indentions on the cancer side. I like the idea of only one more surgery instead of 2.
Mom4gma3 thanks for the mention of the Chemowave app. I am tracking my SEs in a spreadsheet. An app would be make it easier to just grab my phone to put them in. Excel for IOS is a little clunky!
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Hope, my husband went to Deer Park. Niece graduated from the creative & performing arts school, then CCM, and is dancing with a company in LA. Nephew at Elder, some little ones sprinkled on both the east and west side in elementary schools, plus a few in Indianapolis - elementary, high school and college level. My girls are the oldest kids in the collective family. They graduated from BGSU, and are pursuing masters work now. Busy! I am two classes away from my masters, but waiting to see if I need to postpone my spring classes until chemo is over. Undecided right now. Trying to be realistic and optimistic about what I can handle.
Let's sing..."it's a small world afterall"
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blair, what did you mean about your heart and react with heart disease? I don't got it . do you mean that chemo may effects your heart functions?
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Meowmmy...Another connection..sort of. My two oldest granddaughters were dance majors and now own their own dance studio...Prestige Dance Center. They have several students that attend SCPA. This is their 5th year having the studio. I help out (at the desk, no dance talent in my bones) on Saturday mornings. It's so fun seeing the little ones. They may not recognize me this week, as I will have a wig on!
Good luck getting your masters...I can appreciate what you're going through. My daughter is a pediatric audiologist and just received her doctorate this past August. It wasn't something she strived to get, but she works at Children's Hospital and they pushed her - plus paid for everything as long as she maintained a certain average...she maintained a 4.0...so she was reimbursed for everything.I'm singing right along with you...I can sing better than I dance...LOL
Hope
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Hope99 - When I was diagnosed, I freaked out reading how radiation and chemo drugs can effect the heart. Having had a bypass three years ago, I was panicking that my BC treatments might be too hard on my heart - making my disease worse. There are some chemo drugs that are harder on your heart than others. Taxotere and Cytoxan are supposed to be ok and that’s what I’m on. I was reading articles on the internet that were old. (One problem with so much info on the internet - many not dated very well either). Some saying there was evidence that radiation caused heart disease - Yada yada yada. Like many of us - we panick reading too much. The articles scared the hoots out of me! I got no relief from my breast surgeon talking about it, so I made an extra Drs. appointment with my radiation oncologist (who talked to me for 45 minutes - love her too), and she put my fears to rest about how now there are newer advanced radiation machines that beam the rays away from heart and other organs. She will make sure my heart will be spared at least with that treatment. I was relaxed until the Oncotype test came back at 27. Then I panicked again. I can’t say that these drugs aren’t wearing my heart a bit, but as long as I can breathe throughout the treatments- I’m ok and relieved. I also got reassured through my cardiologist.
After my surgery, I had this weird feeling like my body didn’t want to take a breath or make an effort to breath inward when I got up in the mornings, but I believe it was the anesthesia drugs left in my system from surgery. It was a very unpleasant feeling. Not a panicky thing, just a feeling I had to force myself to breath. It’s hard to describe, and it went away as I got moving. It went on for five mornings. I was scared I would feel the same way with chemo drugs, but I haven’t- thank God.
I just want to live and breathe! I’m glad to say, so far so good! Hope this clarifies what you questioned. No one else will probably ever have this problem.I just made sure all my doctors knew my most important concern was my heart, because without a functioning heart, the breasts take second place and heart disease is still the number one killer disease of women.
Orangedaisy -my second treatment is 22, I’ll be sick with you girl! We’ll get through this!
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Hope99-I had to have a baseline echo because I am on herceptin between that and the carboplatin I’m at risk for cardiac issues, my heart itself is fine, but I throw PVC’s regularly so I was worried about cardiac issues. I had a brother die of a heart attack at 29 so I am always careful, they think it was genetic that caused his death but so far everyone has tested negative so it’s a lingering thought all the time. They will do an echo on me every 3 months and if there there is a 10% change from baseline they will stop the herceptin until the cardiac function bounces back and then restart it again. I am also having special blood tests with the carbo to monitor that as well.
Tina
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Hello Meowmmy65 .
I think the HER2+ not a big issues. you can pass that dear. I have an appointment on SUNDAY ( pre-chemo doctor), I have no idea what will happen in that day. I think its only for test and see if I am ready for chemo or not . thats it! I will ask him to give me everything I need to reduce the SEs.
Hello nonahope .
I have pre-chemo on SUNDAY, before one day of chemo, I will try to prepare a lot of questions to them. and I will try to sleep well .
Thanks for tips Tina , I will try to drink water as much as I can . about "Chemowave", my mobile is WINDOW not Apple . application not available to download. I am sorry about your brother, and I hope your heart will beating for 1000 years
Hello Blair .
I read about Oncotype Dx score, I think I can not do this test and I am sad . because you are in stage 1 (No node involvement), you can do this test and see the chances of return the cancer back. for my side, I have two positive node, I am Stage 2A according to my doctor, so I can not do this test due to node. I am afraid about node involvement too much because I do not know how much worst is that to my body and treatment plan . I cry too much when I remember these two positive nodes.
Can chemo reduce the number of nodes involved ? what the chemo do to lymph nodes?
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I can’t do the onco type test either hope99, from what I’m reading you have to be er+ for that test. I did do the complete genetic testing for my kids sake to check if I had genetic markers for cancer. Which came back basically negative, I did have a variant though. I don’t completely understand the results but know the doctors do.
Tina
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As I know Tina, Onco test only for stage I and II with no nodes involvement . for my case, I can not, but you can because you are stage 1A .
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hope99- I’m er negative so I can’t at least from what I have read. It’s for er positive cancer.
Tina
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There are other similar tests for hormone receptor negative cancer. Some of the tests can also be done if a few nodes were involved. I had the Prosigna test which can be done with or without node involvement. Here is the link that shows the tests. http://www.breastcancer.org/symptoms/testing/types/oncotype_dx
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Hope99 - chemo kills all cancer cells throughout your body - breasts, nodes, everywhere in your bloodstream and keeps killing. People with early stages may need chemo or not. When the Oncotype test is a higher number, over 18, but between 30, it's in the so called gray area of needing chemo. Over 30 is considered high risk, so that's why many of us early stagers, low risk clinicals, end up needing chemo with or without lymph node involvement. When cancer cells invade the nodes, then it's most likely a doctor is going to recommend chemo, because it could mean the cancer cells are sneaking into your body when they reach the nodes. Also understand the Oncotype test analyzes the genes that make the persons cancer likely to reoccur. Don’t cry - your nodes will be fine and after chemo, those nasty cancer cells should be gone or killed. With all treatments, we all have a slight risk of recurrence. Until cancer is truly cured, then we need not worry. Keep in mind that medical science has come a long way with BC, and is almost cured. We are so lucky we don’t live in the 1950s! We would all be dying!
Keep your chin up, try not to get down (Oh i should talk, with my past worrying), listen to your doctor, ask a lot of questions, and you’ll be fine. I’m an old person and I’m now determined to get through it once and for all. So many here have given me that faith!
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The main purpose of these tests are to see if chemo will benefit people with low stage cancer. They've categorized genetic makeup of tumors and found which types are more likely to return. For years, people with stage 1 did not take chemo, because the tumor could be completely removed by surgery or radiation, and the cancer had not metastasized beyond the original tumor site. But over the years they would see cancer return in some of these low stage cases. One theory is that there are micro cancer cells in your body that start will grow in your body in the future. My tumor was 1.2cm, no node involvement, I had a double mastectomy due to BRCA2 positive status, so on the surface it does not look like I need chemo. Sadly, my Prosigna score was 61 which is the bottom of high risk, so I am taking chemo.
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Thanks for positive post Blair, but really I'm scare too much about nodes involvement (two nodes) and may increase when surgery see me after 4.5 months . the stage will jump to three and survival rate will decrease. fears kill me .
the doctor did CA 15.3, CEA and CA 125 . he told me this is tumor marker for cancer( its protein that moved in our blood if the cancer move in our blood), if its more than 30 it means the chances of recurrences will be high, I think its same to onco test! I have no idea about that, still I don't get the result. according to the doctor, no evidance about metasise that break the lymph nodes, two positives node don't mean the cancer spread, is that true?
did you mean if I have two nodes involve, maybe after chemo will become one nodes?
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Hope -
Her2+ is more aggressive than ER+/PR+, with higher incidence of recurrence. Herceptin targets the Her2, and those infusions are given every 3 weeks for a full year. That is the difference between our basic tumor types. The way I remember my doc explaining it, ER+/PR+ alone is slower growing, less aggressive, and responds well to targeted treatments (tamoxifen or other similar drugs). Only 20% of tumors are Her2+. Still, very treatable with targeted therapy.
I am thrilled that my surgeon and oncologist both insist this can be cured. No complaining here. There are just so many variations, and different medical approaches, it is hard to keep it all clear! It really helps when everyone includes the information in their signature lines so we know when we are comparing apples to apples, or apples to oranges. I appreciate that feature on this forum!
You've got this. Take someone with you on Sunday to help listen and ask questions. I flushed red in my face, neck, and chest last night. My daughter had attended the info session with me, and remembered the nurse talking about that potential side effect. It really helped to have her remember - because I can't remember it all - even though it is all written down. (The flushing is still there today, but less than last night. And I'm a little puffy, but not bad. Again - no complaining from me. I feel really good overall.)
If you are really stressed, ask them for some xanax or ativan, and something to help you sleep Sunday night. Trazadone is amazing for sleep, and does not make me groggy.
Elizabeth
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