Starting Chemo September 2015; join us!
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Hormone suppression comes after txs are done.
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Scotland- how are you doing on Day 5 after Taxol? I had a bad day yesterday with pain and elevated temp. (started on Day 4)
Doing better today but feet feel frost bitten. Guess I got lulled into thinking Taxol would be easier. Not sure I'd say that. It's different but not easier. Maybe I can get some help with these SE's from MO. The pain was crazy - spasms all over. Never had that before and I have a high tolerance for pain! (Birthed all three babies with no drugs and two were 9 lbs) It all hit and had a big pity party.
My MO says take Advil, Aleve, Tylenol - whatever! And I have an Rx for Tramadol which I took too!
Hoping for a blessed week for all of us!
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Sailorgirl..2nd round of taxol this past Thursday and its been a hell of a weekend. Temps spiked again and the joint pain, specifically in the hips, lower back are killing me. I've got to take a couple of tylenol #3's regularly to help get through it. So far, no sign of neuropathy so I'll take that. Last appointment with MO she suggested we lower the taxol dosage by 20% if this happened again. I may just take her up on it. This is all preventative but with 2 rounds left, I don't think I can take any more.
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I'm in chemo pause. Soon to be permanent anyways. I start ais right after my ooph. Starting to feel a little anxious about menopause at 35.
Cookie cake! I miss sugar soooooo much. I cheated and had about 3 servings of cheese today and am feeling guilty.
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Lindy - thanks for the heads up. I was caught off guard with the pain for sure! Let me know what you decide. I will update as to what I learn from my MO. I am better but it was a hell of a two days!
I never had any pain from Neulasta so I deduced that is the Taxol.
I even got some MJ from my son to try and it helped a little but I was already feeling better, so I have it in reserve for #2.
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You are supposed to eat whatever you can/want to eat. Chemo isn't time for diet. I'm doing Nutrisystem after txs.
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Cajun, what diet plan are you on? I need to start planning what I'm going to do. Right now I'm just trying to eat. Everything tastes awful.
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Sailorgirl, I had Taxol on Tuesday and today nothing hurts. Fingertips are numb, but can feel heat and cold again. Tastebuds are off, but not completely gone. Feels like mouth sores are starting up. Constipation is an issue, but not as bad as the second/third round of AC. Joint pain was bad on Friday, and moderate yesterday. It was sometimes hard to walk, and I had to sit on the floor instead of the couch. It kept me from sleeping, even with pain meds. I've always had a high pain tolerance, and this was annoying. Very little joint pain with AC and Neulasta, so I'm blaming Taxol. Fatigue was mostly Thursday and Friday. Eyebrows and scant remaining head hair are getting coarser, and I expect them to abandon me soon. No fever. So far, Taxol has been much easier than AC. I'm completely paranoid about the neuropathy, though.
We spent much of today raking leaves. It was an oddly normal day. I've missed normal.
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I started an alkaline diet wih zero sugar or simple carbs (mainly sprouted grains) prior to surgery and chemo. My ph has gone from 5 to 7ish. It is not for weight loss... I have gained 11 much needed pounds and holding steady. Cutting most meat is easy for me, but I LOVE cheese! Plan to start juicing after chemo. I also joined an organic local buyer's club.
Other than the first round when I unnecessarily drank the brown cow, I have had almost no digestive issues, so I can't blame the cheese on chemo! Lol.
I also quit drinking. I miss it already,but truthfully can't imagine pouring more toxins into my body after this. But I do love wine!
Also want to note that I cleared this with my MO.
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I need to remind myself of this. I'm having a hard time fighting back "dark thoughts", which seems stupid to me, because since the Big C and headache from FEC 11 days ago cleared, physically I'm pretty much ok, and thanks to meds, I'm finally getting better sleep. F*ck this BC.
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I really tried hard to avoid it, but I spent the night in the hospital under neutropenia protection. I am getting lots of antibiotics. Does everyone have a bad taste ( or any taste ) when they flush your port? My port may be (I don't think so) infected so I am getting treated by IV.
I have learned -don't miss your neulasta shot!
Southern Charm- I hope you are feeling better! I want to come down to TN and have a milkshake with you when we can both taste foods again.
LindyC- Glad to see both you and your son are doing well
Tessu- It is hard to be where we are without letting in "dark feelings", but you are among friends, you have people (and animals) who love you. I have to get home to let my dog out because there are no friends or love ones who will do it for me. And now, especially feeling as embarrassed as I do, truly love my crazy, dangerous, unpredictable bundle of black furry energy and can't wait to kiss him on his wet, cold nose.
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Cajun- I'm trying to do organic also and no red meat. Do you have a certain juicer ? Or book you are going to go by? I am reading The detox miracle sourcebook by Robert Morse, n.d.
Artista- I agree screw it what ever works! Usually I have one or two bad days and then I'm good! So ibuprofen it is!
Jabe- what hormone med are you starting?
Actually what hormone med are all of you going to start?
My mo wants me to start tamoxifen not to sure about it.
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Sailorgirl, Lindy, & Scotland I agree taxol sucks. It doesn't matter that it's day 2 or day 13 it all sucks. I go wed for #3 and plan on asking my mo to lower my DD amount if we go ahead with the infusion. I have been taking b complex, & b12 since round 1 & added b6 round 2 when the neuropathy hit worse. I still have the lead leg feeling and tiredness. Yesterday was the worse for me with burning pain in my feet with numbness in my hands. I also am preventative at this point and don't think I can make it to the last dose if it will mean permanent neuropathy. I am wondering if the next dose is ok to take and hope that the mo can advise.
I wish minimal SE's for all this week. Hard to believe it's Thanksgiving.
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I'll start Tamoxifen. My mom was on it for 5 years with minimal SEs. Hoping for the same
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for those of you on DD Taxol, is switching to weekly an option? Other than being tired, I have zero side effects so far.
Grey, I taste the saline flushes from my port. They kept thinking it was infected, but it's just chronically red. I scar easily.
I will be following a juicing plan from a holistic doctor. I use the nutribullet. If you like, I can share some of he info. It tastes too disgusting for me to do during chemo, lol. I had a dream that I went sugar crazy after My last post. Ice cream, brownies, cookies, mmmmmm!!!!
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I have to start with aromasin to participate in the Everolimus trial. I'm not sure if they will put me on tamoxifen for 3 months during rads and until my ooph.
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Hello to Sailorgirl, Shopgal, Lindy and Scotland and others on DD Taxol,
Thanks for sharing your statuses. I had DD taxol #2 last Thursday with a Nuelasta shop on Friday. Tongue and finger numbness worry me. Had crummy aches but took Aleve and Tylenol. Some heartburn so took Zantac. Ability to taste is gone. Numbing definitely increased since #1. Maybe will have to back down to weekly. Hoping it eases before next scheduled infusion. Taking glutamine and B6 - hoping it will help. My MO said 50 mg of B6 daily. Are you taking more?
My MO suggests i get hysterectomy and do arimiistat. I'm 52 and pre menopausal now. Must lose the ovaries to get post menopausal status in order to take Arimistat (sp?). I want to avoid tamoxifen if possible. Since I started taxol I missed my period and am getting my first hot flashes. They are mild and bearable so far.
Still thinking about all of this and benefitting by hearing your plans. Blessings to all!
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Hmmm it might be aromasin in my future. It seems there are a few options - that start with an A???
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My MO's current plan for me is to start Tamoxifen after I finish rads, switching to AI when I hit menopause. "For at least ten years." Although she feels that chemo is absolutely appropriate for me, in the long run she thinks that hormone therapy is going to be my most effective course of treatment. Some people continue hormone therapy more than ten years. Yay. But I think that my brother and I still have some PTSD from my mother's eight years of Stage IV colon cancer, and I will take the blasted pills if it will spare my husband and daughters that.
Shopgal, was the second round of Taxol worse than the first? I'm a week past round 1, and this has been a cakewalk compared to AC. Neuropathy is only in some fingertips now, and seems to be easing up. Best of all, for the first time since I started chemo in September, my brain feels normal. The taste buds are a bit off, and the poo fairy is definitely a frenemy. The PA said that Taxol's SEs are cumulative, and I wonder if I'm just enjoying a honeymoon period.
Cajun, my MO said that switching from DD Taxol to weekly was absolutely an option. Because DD was so much easier logistically and there's an easy Plan B, DD was a no-brainer for me.
Grey, I taste it when they flush my port, and there's no sign of infection. And I'm totally with you on the dog. On those days that I'm dragging home on fumes, there is nothing better than a cold, wet nose and wagging tail.
Shelly, you may also have the option to reduce your DD Taxol dose as well as switching to weekly. A week past my first DD Taxol, and the neuropathy has reduced by half. My tongue was only numb on days 2&3, my feet were only mildly affected, and it's now gone from my pinkies and ring fingers. It's lessened in the other fingers.
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Shelley & Scotland I am taking 50mg of b6, & a b complex, & b12. Aches eased off & tiredness comes & goes. Overall it is better than AC, but the numbness is getting to me. I worry about if it will resolve after chemo or will I be stuck with it. And yes I still can go to weekly but with 2 left I just want to be done now.
Cajun each DD is 2 1/2 times the amount of weekly and with either timeframe it all is cumulative. I am DD because of TN.
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For neuropathy, check into acupuncture. The place I was going to go for txs highly recommended this in the chemo teach. Some insurances cover it too.
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Yes, it's a lot of poison either way. I was given the option of either one, so I didn't know if switching would be an option for some.
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Shelley - yes, aromasin, arimidex, femara.
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hi ladies
The september chemo group is much more active than my october chemo group so i thought i would also post here:
dont want to grumble today, but feel i need to ask this. Since beginning your chemo treatments have you had second thoughts or questioning your decision to do chemo?
I had one node positive out of 17, grade 1, and my oncotype came back at "9", which translates to a 5% chance of recurrence with hormonal therapy. Yet my oncotype also showed a 7% chance of recurrence with hormonal therapy AND chemo, so my choosing to do chemo has actually given me more of a chance of cancer recurrence. I am 100% er & prg.
Would love to hear your thoughts!
Kim
Edit to add i begin DD Taxol next Friday, Dec 4, so reading your recent posts closely, thanks for the info
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Canjun queen- yes that would be awesome if you would share some your holistic Dr's info. Thx
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Hi Kim. I haven't questioned my decision but my MO did not do oncotype or mammaprint. Probably because I had 2/11 on the left side and 0/3 on the right (prophylactic). But my cancer is grade 3, both the DCIS and IDC. I do sometimes wonder whether I should have gotten a second opinion about the chemo regimen (I did on the surgery and path report), however my cancer was moving very quickly and I trusted my MO. To some extent I will probably always wonder about that.
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Chemo responds best to grade 3 and high Ki67 scores.
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Good Morning, just checking in. I'm 26 days PFC. I think I'm turning that proverbial corner. Yesterday I rode my motorcycle for the first time since June when the first of my three surgeries started. Now if I can just get my hair back...
Happy short week everyone.
Hazel
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here are the list of foods I try to eat from. The doctor said strict adherence is not necessary unless you are stage 4 but try to generally pick from the list. It is meant to compliment not replace chemo, etc. The 2 big no no's are all forms of sugar and fake sugar other than fruit, Stevia, and a little honey and no simple carbs. Once treatment is over, a lower protein diet is recommended.
Today I've had Ezekiel bread with almond butter, popcorn popped in olive oil, an a
pple, and a bowl of an Indian spinach dish and green tea. What I really is a diet coke, what is that?!?0 -
Checking in with everyone. Got dose #5 of Taxol this morning. 7 more to go. The primary SE I have is fatigue most of the time. Apparently my runny eyes and sore thumbs are residual SEs from the AC. I do feel a bit achy at bedtime but since I'm on the lower weekly dose, I no longer get the neulasta shot. And I'm 66, so aches & pains happen these days anyway! And I take ibuprofen before bed most nights although I do tylenol the night before a dose as well as the night after the morning dose. My MO seems to prefer it but does accept that I prefer ibuprofen.
No numbness so far, even when it was 20 degrees this morning! My blood counts are low, however, so I think it will be best to stay home on Thursday. We usually have a large gathering with 20+ friends each year, but I'm afraid of being exposed to potential germs. One good thing about staying home is we'll have leftover turkey! Wednesdays and Thursdays seem to be my extra tired days anyway. Fortunately, I bought a turkey breast last week, just in case. It's thawing in the fridge.
Food still tastes mostly OK so that helps a lot. I'm keeping busy work-wise as much as I can. I'm glad I work at home anyway, especially with all this crap going on. It helps to work for 2 or 3 hours and then just take a break when I need it.
I'll try to post my little story at some point, but it's mostly just that I discovered a lump when my boob itched one Friday night back in June. I live in the woods in Virginia and am always paranoid about ticks in spring & summer (tickanoia). Went to the doc first thing on Monday and he immediately ordered a mammogram. (My last one had been when I was 50.) The mammogram called for an ultrasound which led to a biopsy and here I am, learning way more about cancer than I ever wanted to know. It sucks but I'm glad you wonderful people are here so we can bitch & moan to each other!
Hope everyone has as wonderful a Thanksgiving as possible and that you can taste and maybe even enjoy some good food!
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