Starting Chemo September 2015; join us!
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Yes, with this old-man fuzz, I'm ready to shout "Get off my lawn" with Southern - and I'll be poised while doing it!
(And grateful to have minimal eyebrows and lashes for the moment.)
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You ladies are cracking me up! Xo!
No ER. Reporting to the nurse tomorrow. I'm already on Keflex. Was told that the neulasta probably had not kicked in yet when they drew my blood. Apparently the goal is for it to kick in before your counts drop but sometimes that doesn't happen. I surely endured all the SE, I demand my benefit, neulasta!
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Southern - You bring the BB guns. I got me a passel of little boys on this he'ah cul de sac who are constantly on muh lawn....
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Hi Southerncharm hearing you are feeling normal does me good. I had a horrible weekend after my first docetaxol on Thursday but Ive woken feeling better so I think I will be much more normal by Wednesday. The fatigue is so depressing I miss the energy I used to have. Have to keep pushing feels good knowing only two more rounds. Wishing everyone the best week possible.
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Is there room on that porch for me? Instead of screaming "get off my lawn" I'm screaming "pick up your garbage" to the hillbilly neighbours. They insist on putting their bins next to mine on the curb (their side is available) and when their recycling falls out of bin, they don't pick it up when they collect their bins. Plastic bottles and cardboard is cluttered all around my mailbox and lawn. I'm ready to go all nutso on them but first I'll remove my wig/hat. That should make an impression.
Oh and I've learned not to cough, blow my nose or anything until I'm on the toilet. This pee dribble is ridiculous.
My first fever-free day but I'm wiped. Can barely walk without getting winded. On a positive note, first visit with my son since he entered rehab. He is doing so well and is so positive about what he is doing. I know its a long road but he's headed in the right direction.
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Hi LindyC
I feel like yelling at people too...I think we're going nuts☺ Our energy will return and so will our bladder control....time and patience. Great news about your son you are right it is a long road and its not going to be a smooth ride but thank god he is trying and is in the right place. Roll on 2016 good health to you and your son.
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Lindy, glad to hear that the visit went well and he is doing okay.
I also have spiky fuzz hanging around after infusion #3. My youngest likes to pat my head and then tell me "ouchie!" Round 3 has been hard. Hoping that tomorrow I start feeling better.
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LindyC - I am glad your son is doing well. I think you need to give yourself a break now. You are doing what you need for yourself and your son.SouthernCharm- I have been right there with you for a long time. I have been peeing and almost pooping on myself since the start of this hell. You are going to get your hair back and you will appreciate it so much more.
I have been in bed all weekend crying because I can't even fathom the amount of pain I have been in since chemo. My therapist made me cry because he made fun of me. If this is AC#3, I can't do another AC. I am going to say goodbye right now to you all. Have a nice Thanksgiving. I am not in a good place in my mind so I won't poison the discussion.
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hi ladies!
I am in the october chemo group, so most of you are a month ahead of me- just wondering if any of you have started taxol and what your experiences with side effects are so far.
Also. I havent lost all my hair yet, i buzzed it super short after my 2nd chemo treatment - i had started losing it at that point, thinning really, and couldnt stand it anymore so i buzzed it. Have any if you experienced this, and have you lost it since starting taxol? My buzz looks like i could have a full head of hair.
Thanks!
Kim
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Kimmer33 - Welcome! We have another (technically) October person here. Some of us (like me) started in late Sept, so you may align well with a few of us.
I have not lost all my hair (most!), but anticipate losing the rest when I start 12 weeks of Taxol next Tuesday. Several here have good feedback - scroll back through, search on "Taxol" and you'll find their valuable experiences, including recommendations on B6 and L-glutamine supplements.
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I will need all of my good humor next week battling edema (or whatever it is), fighting the insurance company's rejection of Neulasta (AFTER I've had all the treatments!) and supporting my best friends through hospitalization for bacterial meningitis. She has had MS for many years and is my hero. Her total class, bravery and insistence that MS "doesn't define me" has inspired me not to be whiny so many times during BC treatment.
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Lisa- Tell the folks who administered the Neulasta. First they shouldn't be giving it to you unless it's auth'd. That's one reason my chemo was delayed, aside from infection and low rbc/ct/hgl.. That office should deal with it. My MO herself called the insurance co and gave them holy hell that the whole office told me they were afraid to move listening to that call when they were saying no to Neulasta for me. For something that's already done, they can't charge you. You were following dr orders, not asking for it yourself on your own which you can't do any way..
I had the fear of AFTER my inpatient surgery for infection with insurance saying it wasn't medically necessary that I"d be stuck with the charges. PS office said nope. It was necessary so no worries. They can't come after me. So try not to worry about that but just let your MO and whoever gave you the shot know so they can fight it when they see it wasn't auth'd. Whoever rx'd the Neulasta for you will appeal the decision. But just give them all the heads up. Good luck. xo
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Artista - I did not know that - thank you! Yes, I'd gotten the strong impression the practice was careful about this kind of thing. The kink here may be that my insurer either said 'yes' or gave a provisional 'yes.' The declining company is an entity that reviews the insurer's decisions. Ugh. Thanks again - this is valuable experience and takes a weight off my mind.
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hi Kim! I start 12 weeks of Taxol on Friday if my WBC allows. If you care to come back, I'll post a review this weekend.
Grey, you can't quit 3/4 of the way through...then it will all be for naught. Can you get some rx painkillers? I took my leftover oxy from surgery.
Lindy, prayers for son's recovery!
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Ugh. Round 3 sucks. Between the D and just throwing up, it is not going well. I wish I were closer to the end instead of halfway.
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cajunqueen, yes please post and let me know how it is! Thanks!
Skittlegirl, i feel the same way, i have my 4th chemo this friday and wish i was on taxol already. My 3rd chemo was the worst! Hang in there!
Kim
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Lymphedema pain (fimgers, hand, arm, chest wall) and the related most-of-the-time loss of use of my right (dominant) hand has had my mind in a scary dark place over the weekend, so I've just been reading not posting here. Losing the joy of being able to craft and create tangible things with my hands is hitting me too hard. And the pain. Have been told by everyone that real lymphedema treatment can't begin until after chemo; end of January seem ages away. Docs keep saying take meds, have given me plenty, but I hate feeling drunk from them. But I finally broke down and took narcotics (OxyNorm) last night, watched nature shows on tv, and slept a little better last night.
I don't understand, I have 4 of 6 chemos down, 2 to go (then almost a year of Herceptin and AIs forever, but that's not supposed to be as bad). I feel I should be celebrating. But instead I am mostly in tears, and ashamed of that, because so many of you women have things so much harder. Yes, I have a good therapist, thank god, and will see her Weds.
Sorry to dump darkness here, where there is so much light and hope
But thank you wonderful ladies for being here.Wishing everybody an uneventful Monday
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and, is anyone doing dose dense Taxol, once every 2 week?
Kim
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Cajunqueen- When I told my therapist how much I was suffering, he laughed at me. I have been unable to keep anything down since Wednesday. I didn't even get a day of reprieve from AC#3. I have been house/bed bound since Friday. The on-call (male) fellow was less than sympathetic and was more interested in my suicidal feelings than the fact I couldn't keep anything down. If it doesn't get better soon, I think I am justified. Except for you guys, no one even knows I am alive. Therefore, no one will miss me.
Skittlegirl and Kimmer- I wish they would just be straight with me and tell me that each successive treatment is going to be worse so I can prepare myself and know that I will be in utter agony for a week. I have begged for meds to get through this but my cancer center doesn't have that ability. It makes me feel a little less alone when I know I am not the only one suffering ( but I don't want anyone to suffer like this).
Tessu- Please keep talking. It makes me feel less alone to know what is going on with you. I guess there is not much difference between the CEF and the AC - at least in color. Now if I see red liquid anywhere I start to throw up. I saw red antifreeze and started to throw up.
You guys have so much more to live for. Children, husbands and friends are there for you and care for you. Everyone has abandoned me. I haven't had a phone call for weeks and I have been uninvited from a number of parties. What I realized is that this just can't continue on. My only friend left tells me that if I don't complete chemo and it comes back it will be all my fault ( by email). But she doesn't know what we go through.
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Hang in there Tessu. January isn't that far off. See how fast Sep and Oct flew by. Take the drugs and sleep through till January. We're all behind you!
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Tessu - "Misery loves company" - my very painful, swollen right hand reaches out to your across the Atlantic. I cried and cried this morning in pain and frustration. We'll get to the other side.
Grey - When we're discouraged by being in pain and feeling lonely, that's a natural reaction. I admire you for persisting, which is really all that matters end of the day. I would miss you. Please find a doc or suicide hotline who will take your suicidal ideation seriously. I've been there and you need help to get through this.
Skittle - My round 3 was worst of all. Round 4 was the easiest. Go figure. Hang in there.
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Gee Lisa lol on the other October person "technically" here.
Cajunqueen is right Grey you can't quit. I'm here for you if you need someone to talk to. You don't have to suffer so much. Surely you can find some over the counter meds for nausea and pain. Unfortunately, depression is a common SE of BC. Check American Cancer Society or Breastcancer. Org for help or from your local agencies. Ask your doctor. There are so many of us who care about your well being.
I'm divorced, my family lives out if state and my children, well they don't give me any support. So I doing this on my own FOR MYSELF. I am not ready to die. You just never know what's around the next corner.
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Grey- Please don't think suicide. I've been suicidal twice in my life: 2006 and 2011. In 2011 I almost succeeded. If my friend hadn't found me, I wouldn't be here today. I too had those feelings with people abandoning me or not really caring with my fam. Friends pulled away because who wants to hang with someone with mental illness (not saying you have it, I do). Oh the stigma too. No one at work would get it even though I was allowed 2 months away without getting fired because I was locked up and then in partial hospitalization.
One thing I found is for me, I get more support and love from many online folks that I ever did in real life. The beauty of online and finding forums where people just like you are is you do become best buddies and do care about each other. I have best friends that I've never met from all around, some for over 10 years! We met posting threads on message boards of interest and started texting/pm'ing/talking on the phone shortly afterwards. And some of these people have heard me at my ugliest and lowest. Those folks are the ones that have kept me going. So while majority of my fam don't get it with mental illness, and being Iranian, it's a huge stigma against them, my online buddies do and it helps tremendously. There are so many message boards online under every topic of interest, including major depression and anxiety. If you aren't on meds for it then you really should be and stay on it. I made the mistake of thinking when I was fine to go off of them after 25 years and I fell bad so I'm back on them and screw it. I hate taking pills but I sure won't stop again.
One thing I found that is key that despite all the support I've gotten, I've had to come to the place myself of helping me. And being told that when I was so down that I didn't care anymore was something, but it is true. Find support, good loving people online and forget those in your life. Rid yourself of those who bring you down and seek only those who benefit you. I haven't seen my fam that lives 1/2 hour from me in 2 years now because of how they treated me in 2011. And you know what, I have no desire to reconnect. I'm so at peace because now I have a select few and many online friends who give me genuine unconditional love and support. And when I told them I have bc, no one ran away. So I encourage you to seek message forums that interest you or about depression/anxiety and connect with those people just like you do with us here. You really need to and it's online. You don't need to post your pic. It's anonymous unless you decide to give more info later on. But I really think you need to connect this way especially because you are in no shape to go to support groups. And check into getting meds for anxiety and depression. It makes a big difference trust me. It doesn't mean you have mental illness like me, just you need help to get through bad times and you shouldn't feel bad about it. I would respond back to the docs who laugh wtf is funny sir? I would fire back until they are looking for away to escape. Better yet, screw that "therapist" and get another one that is better. You need to see a psychiatrist to get meds. Therapists/psychologists can't rx meds.
And finally, you keep posting how you are bringing folks down with your posts here. I'm sure I can speak for everyone that you are not. We love you and don't enjoy seeing you hurt which is why we all say don't leave when you say you are. Please do what I suggest. I've been there and now with this on top, you really need so much more than what you are getting now and the good news is, you can get it and go with it. So don't give up my friend. Show yourself you too can overcome. I have a blog going which I'm documenting my journey to which those who know my history before bc are following. I have received pms of hope and inspiration from people who were in my shoes, Who knows, maybe I save a life or two. That's what I live for. I don't have kids or significant partner either which is a big reason why it seems many here carry on even if they sometimes feel like throwing in the towel (I mean on bc.org not here in this thread).
Become an inspiration to others. Document your jouney in a blog online. You don't have to share it with anyone unless you want to. But it does help to go back and see how far you've come once the light starts to show back up in the tunnel, and it will. You just have to hang in there and fight, you hear? Never.give.up.
And let me add that if you want to pm me, feel free.
xo
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Also let me add about the suicide hotlines. You don't get help there, at least what you'd imagine it to be. For me I thought therapist on call. Their goal is to talk you down. If you aren't going to "do it right now" you typically are put on a long hold for those who are. The people there is first making sure you aren't about to do it and to talk you down if your are and then next, they can help point you to where to get help.You can give them your situation and they may be able to provide you with resources in your area. Worth a call but just so you aren't shocked like I was, that's how that works.
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Happy Monday all!
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Lisa, round 4 was easiest - was that AC? What????? How is that possible LOL
Grey hang in there sweety, you can do this, we are all here for you.
We will get through this!!!
Kim
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Kimmer - I know, right?? These were rounds 3 and 4 of Adriamycin (aka "Red Devil") / Cytoxan infusions. I sat at home nervously watching the clock after Round 4 treatment as the hours clicked by, waiting for.... something. But I had not even a hint of bad taste in mouth or nausea (both of which were overwhelming after Round 3).
I give up trying to predict how my body is going to react to these treatments. BC chemo SEs are Winston Churchill's "riddle wrapped in a mystery inside an enigma." There is no benefit to me in trying to predict or prepare. I must simply roll with the punches.
All - Speaking of which....Imagine my amusement when the call center rep informed me this morning that the letter I received Saturday is meaningless. All my Neulasta treatments were approved upon appeal. (Mind, page one of the letter includes the words Result: Declined in bold.) ¯\_(ツ)_/¯
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sitting here getting my last infusion. Exchange surgery and port removal scheduled. Things are looking up!
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Told ya Lisa! Yay!
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Is it just me or is the worst part of infusion day checking in and waiting to be called? I swear I sit here practically in panic mode thinking I should flee. I have problems
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