Chemo starting November 2018
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Jiffs,
They have me on AC every three weeks for four sessions and Taxol weekly at 13 sessions. I am getting with my insurance to find out about max out of pocket and coinsurance. We do have a very nice policy with a zero deductible (great when you are not sick!) but I am hoping my Max out of pocket is low and if so then it will not be too bad. My outpatient fee is $300 and that is how they log all chemo infusions even though it is not completed at the outpatient center. I am working on getting this handled though! Meeting with the rad/Onco Monday as they may recommend Radiation on top of the chemo.
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MissouriCatLady,
The Cancer Center I am going to mentioned grants and such specifically for cancer patients that need help with copayments, deductibles, and such. Have you checked into that? I have a call into my insurance rep to get specifics and see if they can get the billing from chemo changed to a specialist visit rather than outpatient. Copayments are much less that way and waiting to see what my Max outof pocket is...hoping it is somewhat low.
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Hazel-but,
Gee that sounds awful! I am glad you were able to make it through the entire infusion! What a mix...wired from steroids and then sleepy from Benadryl. I can imagine all you can do is just stare into space and wait. I hope your next infusion goes smoother.
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Oh Hazelnut I’m so sorry that happened. My daughter went with me to the first infusion and I made sure to warn her about that possibility. That made me as nervous as anything - having her there and wanting to protect her. How exhausting. Hoping for the best for y
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Duncmelsmom. Have you learned more about the fasting? I see the articles about the impressive results with rats but as my husband says - lots of things work on rats It seems to be early days but I’m very curious. My sister in law has a history of family breast cancer and is the one who mentioned it
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MDoc - Thank you for asking, I am hanging in there, some days are better than others. My co-worker suggested I take Tart Cherry Extract pills for diarrhea, which I just started yesterday. I am the diarrhea queen, soon to be the bald diarrhea queen and I might purchase a little crown to wear on my hat, lol. I had my blood drawn yesterday and am cleared for round 2 on November 28th. My rash is due to tape, which surprised me, I've had tape put on me before and not had a problem. My port likely will have the wonderful tape on it for 3 weeks the nurse told me, it is not even trying to leave my body yet. I have a prescription for Magic Mouthwash now, which numbs your mouth and about made me gag last night. My mouth is sore and I think maybe filmy (like hairy tongue, picture that one in your head), and I've been gargling with salt water and baking soda rinses. Thinking I will purchase the softest toothbrush available today. Nurse told me next time she seems me I likely will not have any hair.
Neulasta. They had me come in and get the shot last time and it took 2 days before I realized what a joy that is. I don't know if I want to get the On-Pro shot next time, Mdoc, if there is a lot of adhesive. I hate to take off work and drive over there, but I don't need more rash problems. I wonder if I can get a test strip piece of tape? I have had 2 C sections with my kids and have never had a tape allergy until now.
Hazel-Nut, you poor poor lady, I am so sorry you had so much trouble. I hope you are having a good day and having a little time to rest. I hope your next experience is better too, now that they know what to expect. Grateful you are okay.
RunningCats - welcome to the TCHP club. Make sure you ladies have Imodium at home, just in case you want a diarrhea crown too.
Bookworm - thank you for thinking of me, but when I asked the hospital for any type of financial assistance, they told me which bank to call. After struggling with the anxiety of how much this is going to cost, I am trying to just accept it and pay them as much as I can every week. I just got my first couple of bills through my workplace yesterday, and haven't met my deductible yet, which is kind of funny, considering my tests were each over $1000. Thank you for your help though, very nice of you to think of me.
Many hugs to you girls, and prayers your side effects are not too bad. I try to remember when I feel like crap, perhaps my "taller than wide" part is dying. Love and hugs, Lisa
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I start chemo on Tuesday 11/20. I actually feel better with a plan and a start date. I'm going with the dose dense. It's right before Thanksgiving so I must be crazy LOL
When I talk to my doctor this morning I told him that we have an out-of-town wedding to attend that weekend and would I still be able to go. He said absolutely, you still have to live your life. He said just don't be kissing people
He said if by chance you do feel sick while you're out of town just go to the nearest emergency room, tell them you're on chemo, and they will know what to do. He also said another option is I could wait until after Thanksgiving for my first treatment. I told him no way I want to get this started and get this done. I know it's only a week but....0 -
Well the benadryl overpowered the steroids fairly quickly and I slept harder than I have since this whole thing started. I can't remember the last time I got more than a couple hours sleep in the night. I have a terrible benadryl hangover today but otherwise not too bad. My doctor sent me a message in my online chart that she'll be working with the pharmacist and her oncology team to see if we can problem solve the reaction for next time. My only real symptom so far is some shortness of breath while walking around or having a conversation. I'm keeping an eye on that one since the meds can cause an embolism. Any worse and I'll call them and see if I should go into the clinic just to be on the safe side. It could also just be some anxiety - I had a pretty crazy day yesterday. Otherwise I'm sitting here at work business as usual.
They put my neulasta patch on my abdomen which I was very grateful for. I didn't want to be worrying about it all night since I'm a side sleeper. Right now I'm desperate for a long hot shower but will have to wait till I can take the patch off.
MissouriCat - have they tried doing some skin prep on your skin prior to placing the tape? Ask for some next time. Its just a little swab that looks exactly like alcohol wipes but it creates kind of an invisible barrier between your skin and the adhesive that can help protect against that irritation. They should have it available right there but you could also send your onc a message asking to have it ordered before they put any sort of tape on you. All you have to do is ask the nurse to use a skin prep wipe anywhere the tape will touch your bare skin and they shouldn't give you any grief over it.
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Susan05,
Best wishes on your first infusion. I have mine on the 27th since the doctor did not want to do anything on Thanksgiving week. I am happy about that so I can enjoy some great food!
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Hazel-nut,
Is the patch so that you do not have to go back into the doctor for the shot? All my doctor said was that I have to come in the day after chemo for an injection...I assume it is the same meds.
MissouriCatLady,
I posted a link below if you want to take a look at it. From Susan B Komen site. Maybe check with them to see if they can help you. The help with copayments, travel, and deductibles.
https://ww5.komen.org/BreastCancer/FinancialResources.html
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Hi everyone. I just joined today, I started chemo on November 9th. I'll post more later, my brain is not working right now! I have no idea where to go on here so I thought this was a good place to start. I hope everyone is doing well.
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Welcome Kym13. When I joined, someone was kind enough to tell me to visit the Triple Positive Group board that is very active. They can help answer questions too.
Bookworm - thank you for that link, I will look into that, thanks! And if Hazel-Nut is talking about Neulasta, that is the shot I get after treatment, that also comes in Neulasta On-Pro, which is a patch they will put on you, so you do not have to return to the office to get the shot. Ask your insurance provider if they cover that - ours does. Maybe I can find some financial help, thank you.
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Bookworm - it's the same med that's loaded into an injector pump that they apply to your skin and its set to administer the med about 27 hours after its placed. It is to save you from having to go back in for the injection and I think it's the last word on convenience since I would have really hated to have to drive 40 minutes just for one injection (also, an argument can be made about having to go into a germy clinic more often than is strictly necessary if it can be avoided with this). Ask for the patch, it's a fairly new development and the office may not be familiar with it yet and you can offer yourself up as a test subject for the nurses to learn how to use it. I bet if you turned the TV on tonight you'd hear at least a half dozen commercials about the thing, they've been doing some heavy marketing on it lately.
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duncmelsmom—I'm from the August 2018 chemo group. I'm sorry for your diagnosis. I fast. Santabarbarian is the guru and turned me onto it. If my SE had been manageable I wouldn't have ever learned about fasting, but they weren't manageable. My drs hate my fasting so you might get some push back there. However, I'm not sure if any of them have had the pleasure of being sick for 11 days straight from AC chemo. I wish I had known abt it prior to the start of AC. PM me with any questions! I love talking about not eating. 😁
Jess
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"I love to talk about not eating" said this girl NEVER.
Seriously though, both my husband and I have looked into fasting (before my diagnosis) and there are definitely some compelling reasons to do so. We watched about 5 or 6 different Netflix documentaries or series on it. I actually downloaded a few books on the Kindle about it too.
We just never jumped in feet first about it. We did do some drastic but gradual changes to our eating habits over the last 2-3 yrs. We did Blue Apron for about 16 months --> LOVED it. We cut down our portion sizes, froze a lot of the "left overs", crock pot'd more healthy, tried a lot of at home cooking experiments w more ethnic foods, ate more fruit and veggies raw....
I just love food and cooking and eating and everything that goes along with it. There is a forum I am following on here "what's for dinner" in the 'moving beyond cancer' (?) section. I think I am on pg 34 from my mobile view and looking thru posts from 2012 or 2014 right now.
Blood work today went fine. Neutrophils low, but expected. Should be OK for next weeks A/C #2.
Hope everyone else is holding up ok....
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I saw this on the news the other night. Just to give us a little hope. Hope you don't mind my sharing.
Lodi Man Gets Second Chance At Life When Brain Tumor Vanishes Without Surgery
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Hazel-nut,
I will have to ask them about that patch. Thanks!
So I did get some good news from insurance today. I have been freaking out over my copays for each chemo treatment and then radiation treatments (if needed). The insurance customer service did not provide accurate info so I called my insurance rep. I got very upset saying we paid a very good amount each month to have the best insurance so we do not have a deductible...the cust service rep told me that since I did not have a deductible then I would have to pay this copay every single time I go in. Luckily for me that person was not entirely correct. While I do not have a deductible and have to pay the $300 per visit, I do have a max out of pocket of $2,500 (sigh of relief). I have been freaking out since they told me I would have a total of 16 chemo treatments and possibly 5x weekly at 5-6 weeks of radiation! That would have been over over $13,000 just for this treatment. Hope you all are doing well.
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Sadlynew2018 from the October 2018 chemo starting thread found this hilarious story from a skin cream product she was looking at. I've pasted it here..... (Sorry for the long post)....
[Cancer: the mountain lion in your fridge
What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and HOLY SHIT… THERE'S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – "GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" – and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there's someone in the crowd who's yelling "that's not really a mountain lion, it's a puma" and another person yelling "I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"
As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they're half grown and only have three legs or whatever, and you think to yourself – why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling, a best friend or boyfriend, in my case, all of the above – come barging out of the woods and jump on the mountain lion, whaling on it and screaming "GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MORGAN," and the mountain lion punches everyone right in the face. Now your people are rolling around on the ground clutching their noses, and they've bought you some time, but you still need to get to the top of the mountain.
Eventually, you reach the top, finally, and the bear is there. Waiting. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your homies in the face. And everyone is now staggering around with a black eye and bloody nose, and saying "can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is "I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You're not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say "that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!"
Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says "boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is "f*ck this mountain, I never wanted to climb it in the first place."]
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MaddieBrie1,
Thanks for posting that...I laughed and smiled through that entire story.
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bookworm14 - you seem to be pretty close to me in the diagnosis. I’m curious why you had surgery first and now chemo. I’m sure there are all kind of particulars but I’m trying to wrap my head around the various permutations.
Maddiebrie1. Too funny. I mean really tooo funny.
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LizzieBo,
The only reason I can guess for the immediate surgery is the positive BRCA testing and all the scans originally put me at a 6mm tumor without node involvement. I guess they thought since none of that other came up and doing a mastectomy I would be in the clear. Unfortunately, the Mammogram, ultrasound, and PET/CT had it wrong...finding a much larger tumor and nodes surprised everyone and changed treatment.
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Bookworm14 - well poop on that. So sorry. I know all these things are possible but it's shitty when it's confirmed. I have two masses in one breast. Neither showed up with ultrasounds. I was asked if I wanted two or three D and I had no idea why I would pick one over the other, but with 'dense' breasts apparently I should have chosen the latter. No advice about the difference. The PET scan found the second lump which tested positive. With my personality, I do pretty well when I understand the parameters of a situation I need to deal with. But I liked the advice I read in a previous post - write everything in pencil. I'm having to readjust every day it seems. Thank you for your answer, although it's not fun explaining things. I know everyones experience and circumstances are different, but it is SOOO helpful slowly understanding some of the issues.
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Maddiebrie - too funny! I'm saving that for later.
Yesterday I felt like hell and it really took me by surprise. I didn't realize just how terrible I felt until I woke up this morning feeling nothing more than nausea. I didn't expect the first day after chemo to be so rough - I was kinda banking on those couple feel good days before the rough patch really hit. Everything hurt yesterday, even my hair hurt yesterday. I never thought I'd feel so happy to just be nauseous.
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Hazelnut - hope you are hanging in there. I’m a little bit ahead of you and feeling much better. A little this a little that but manageable. Have faith.
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Today I woke up feeling as weak as a newborn kitten but otherwise tolerable. I think most of my really bad side effects are from the nausea meds. The zofran gives me monstrous headaches and makes me so dizzy and tired and the compazine is the same except the headache isn’t so bad. I’m only taking half a dose of the compazine to help the nausea while trying not to have the worst side effects from it and it kinda works
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Hello everyone! I'm on my first chemo session as we speak... they already gave me meds for nausea and i really hooe they work! I want to be functional at least while going through this.. as normal as possible! I have more to go, every 3 weeks.
Prayers going out for all of us going through this right now!
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Welcome ElsaCris. You've had a lymph node removal (and lumpectomy), how is your recovery from that? I'm doing neoadjuvant therapy first, but doctor mentioned after 3 weeks, we might do that.
Hoping everyone is having a nice weekend. I took a lomotil prescription diarrhea drug because I had a place to be Saturday morning. We went out to eat with some friends at lunch, feeling pretty good, and split a burger and fries with my husband. Four hours later, in the bathroom, throwing up and having diarrhea, a double bonus! lol. Don't think I'll be taking that again. I know, I probably shouldn't have tried to eat that anyway. I'd rather have my diarrhea bout than throw up. Thank you for the prayers, Elsa, and prayers for you ladies this Sunday from me too. The pump on my washer went out - life continues! One is coming and my husband is, thankfully, a mechanic, and has put one in before. Have a nice Sunday, I hope!
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Good morning! I am supposed to start TC by the end of this month, I am still waiting for the exact date. I noticed on my authorization that my Onco is giving me steroid via IV but he also gave me steroid pills to take the day before, during and after infusion. Isn't this a little over kill? Any body doing TC regimen that has the same prescribed amount of steroid as me?
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https://community.breastcancer.org/forum/142/topic...
https://community.breastcancer.org/forum/5/topics/...
For those w GI issues ah la, Crones or ulcerative colitis or IBS, I found 2 earlier links on BCO about folks w breast cancer and these issues.
Also, reading some Pubmed articles, there seems to be a phenomenon of Crones, UC and IBD remission during chemotherapy tx and for 6-15 months after. If you regularly see a gastroenterologist, this may be of value to bring up.....
Edited to add - steroids during infusion as well as take home pills for days 2-4 post infusion - that's in my tx plan. I was told the steroids were also for anti-nausea. I haven't had to take any of the other (2) anti-nausea pills post chemo, just stuck w the steroids on days 2-4 post infusion. I didn't feel wired from them or anything though like others have previously mentioned.
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Maddie, thank you for these links, I am going to look at these. Isn't that unusual there is remission in those diseases, wow, thank you. Also, that story about the mountain lion you put up - how true it is, and funny, thank you.
Anxious, I get TCHP and get steroids only via IV before my chemo drugs. The nurse warned me I'd be up at 2 am, but I really didn't have a lot of trouble sleeping (I probably will next time, now, lol). Day three was my dive bomb, after the Neulasta. As they say, everyone is different.
My nurse told me, and this is true, after your first go round, you will know what you're experiencing; nausea, diarrhea - and take a medication to help you. If you don't have one, call the doctor. I broke out into a rash because of the tape and also had crampy experiences in my feet (not neuropathy yet), and got a cream and magnesium and it helps! Call your doctor anytime you have a question or a concern. Although, I really think Lomotil makes me throw up, and I'd rather have a diarrhea problem.
Love you girls, so thankful you are here. It's cold in Missouri tonight, but we will hit 60 on Thursday. Hugs. Lisa0
