Starting Chemo September 2015; join us!
Comments
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Southern - I loved your ring story and the ring itself has such meaning for you now. Envisioning it being "paid forward" in a chain of caring and compassion.
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I was just reading this article:
http://www.huffingtonpost.com/barbara-jacoby/sleep...
Link to study:
http://www.medicalnewstoday.com/articles/280194.ph...
Interesting part about Tamoxifen, is it saying that we need to sleep in complete darkness? Or else the cancer tumor becomes resistant to Tamoxifen?
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Goooooooooood Morning!
I've been quiet for awhile. Here's why:
I went to the ER & was admitted to the hospital Friday night and they let me out Sunday evening. It was fun. I caught my son's cold, stupidly took sudafed to just power through that first day (probably dried up some crud in my nose and turned into a sinus infection). When the medicine wore off my temperature jumped from 99 to 101.5 during my 2 hour nap. It jumped again to 102.3 in the 30 minutes it took to get to the prompt care and was up to 102.9 within 20 minutes of my arrival. The doc gave me some ibprofen and sent me to the ER. Weeeeee... so many antibiotics. All blood, urine, nose cultures and chest x-rays came back normal. I kept telling them my face hurt. My sinuses hurt. And the ER doc said, "Yeah... but 2 out of 3 times a head CT comes back inconclusive." So they just scrambled to rule out everything else and technically are left with zero diagnosis as to why I spiked a fever.
Idjits.
Meanwhile... lots of nice visits with family, free food, skype visits with my baby boy (who couldn't be on the oncology floor sick), and fun scaring the nurses. They always seemed to have something pumping into me, but when they didn't, my sister and I made a break for it. I wrapped up in a robe and we went hiking down the stairs to the cafeteria before my food was delivered to pick something up for her. We opted to take the stairs all the way back up - it was only 10 flights after all. About halfway up I pointed out that I'm still connected to their wireless monitor and that somebody is about to have a fit in 5...4...3.... We hurried up the remaining flights as fast as we could just in time to hear my nurse Lillian shouting, "I have to go find my patient!" and her assistant Erika turned and said, "There she is." I'm convinced this episode is what persuaded my hospitalist to let me go on Sunday instead of keeping me through Monday (they wanted all the blood tests to be back).
Loving the antibiotic runs. I don't know why people complain about the D. I'm in heaven.0 -
Just catching up on everyone.... Hope everyone is having a good day today.
Southern - My family has a history of heart disease too - and my family's is definitely genetic.I saw a cardiologist before treatment, had an echo cardiogram to clear me to start the TCHP. They are giving me a cardiac MRI half way through treatment to check in on my heart. So I'm thinking they might just check you out and monitor you along the way.
Re: vitamins, my MO also told me to stop taking my multivitamin.
Grey- stick with us! We're all here for you. This is a long road.
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If you are halfway through your tx plan, I highly doubt they will change it up now. I would think they would do it if there's any indication that right now you have something going on, which doesn't sound like you do. Try not to worry. I don't know anyone on my dad's side of the family well so who knows what I have over there I have no clue about.
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Southern - if you were on AC-T and Herceptin, then I'd be worried (because the AC also may cause heart problems). But I suspect they will keep you going on the TCHP like they are with me. Make sure you tell the Dr. what you've discovered and ask to be monitored more closely. They should at least give you another echo to check to see if your ejection fraction has changed after 3 treatments.
Given this they will also monitor you during your year of Herceptin.
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Hey all, I'm from the October board amd have read a long here some. I'm wondering if any of you have now moved from AC to taxol or even more specifically, weekly taxol and herceptin. ow would you compare the taxol to AC?
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I don't think it's ever the same even after you are given the all clear. I know I'll always be thinking from time to time if this ache or pain is cancer back again. Right now it's about is the tx we are being given the right one. MOs are using best guesses as there is no hard fact I can find that say for example why someone with my dx is getting AC-Taxol while I'm getting AC-Taxotere. It's a best guess and we hope it is the right one. And then after you have the what if. So yeah, it'll never be the same even years out, but this just means we live each day like it is our last even though it isn't.
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Ok I just talked to my gynocologist and now I'm confused. She talked to my MO and he told her that the plan was lupron and AI for 5 years then nothing else. They just will let my estrogen go back to normal unless I'm naturally menopausal. The gyno is like yea great. Estrogen is good for your bones and heart. But I'm like wtf? Won't that make my cancer come back? So now I need to go back to talk to the MO because something doesn't sound right. I'm so confused.
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I read somewhere here that the hormone suppressant tx is the most effective of all to reducing the chances of recurrence for ER+. I can't remember the # but it was a high one.
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Southern: I loved your ring story. I think sometimes others in our lives can be angels that help us on our path. I hope the ring gives your courage.
Artista: do you ask your MO about TX vs Taxol? I have tried to research a lot of things but sometimes I have to ask my MO what his reasoning is or get a second opinion. I am second guessing my treatment I think its hard to know what a MO is thinking.
annie: Its very frustrating to hear one thing from one doctor and something from the other one. I think Lupron is their first choice before oophrectomy in younger women because it is so permanent. the thing is they don't always realize that to have Lupron a person has to have really good insurance for 5 years since it is a very expensive shot. They didn't consider Lupron for me because of the Palb2 Gene. I wanted to try Lupron for awhile to make sure I could handle that extreme of Menopause.
About the echocardogram. I think they will do a follow up as long as you are on Herceptin. I am also on Herceptin but I can't remember how often they do the echo.
DLcygnet And Lindy Wow getting sick is suckity suck. I have gotten a cold but haven't pulled a fever I am sending you healing thoughts hope that you feel better and keep on your treatments. Take Care of yourself and Take it Easy.
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I hate insurance companies. Some asshole there decided to deny my inpatient hospital stay for my infection back in Sept/early Oct because I didn't have abnormal blood pressure, temperature or pulse. I did not need IV PAIN meds around the clock. Therefore my hospital stay was not medically necessary. First. Are they saying that I received pain meds around the clock because if they are, I received IV ABX- no pain meds. Not even a tylenol. Or is it that I didn't receive pain meds around the clock in addition to one of the other 3 things this dude listed. What morons. I did not want to be admitted. Plastics told me to go because the highest strength oral abx didn't put a dent in the swelling and redness in my foob and I was at high risk of losing my tissue expanders if it went on. I dare them to come after me with any payment due as I'm paid off for the rest of the year! Assholes.
On Oct 8 I had port placement sx. Some claim for rehab services calling for a pneumatic compressor is denied and it says I'm responsible for $978! WTF? And WTF is a pneumatic compressor??? Certainly not something I made a special request for! :X
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my confusion is based on them saying after 5 years you just stop treatment and go on with your life even if your ovaries start working when you stop the Lupron. I was under the impression that hormones needed to be stopped forever so the cancer doesn't come back.
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Ya my insurance denied the echo cardiogram after I already had it. $2400. Asses.
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It is confusing because I would think once you hit menopause that suppressing estrogen is no longer needed. I mean how much do you produce after you stop your period? I'm 51. Mom stopped at 52. Yet I've been told 10 years of tamox or AI, not even 5. I'll have to remember to ask about this when I get to the maintenance stage. Weird.
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at this point I'm pre menopausal. They want to induce menopause with monthly Lupron shots then proceed with 5 years AI. Then it all stops. If my ovaries kick back in then so be it. Sounds wrong to me.
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I would get more than one opinion on your situation Annie. I'd get a few. It doesn't make sense and it should.
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I am no expert, but I can tell you that post menopausal women with estrogen positive cancer (like me) can expect estrogen blocking meds for five or even ten years. I have been told that I will be on an AI medication for at least five years after I finish rads. The body does continue to produce estrogen after menopause.
More here:
http://www.breastcancer.org/treatment/hormonal/aro...
Octogirl
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I feel tired, angry, sick of the way I look, sick of not being able to make plans, sick of the cold I get every round if chemo, sick of the ttinnitus.sick of not being able to join in the gym classes I loved so much. haven't had sex nor do I want to since July. unable to go out in the sun, so no beach.
On the bright side though chemo today so one round closer to the end. Sorry about the whining but this is the only place I can express these feelings. I took yesterday off work because Im exhausted and stayed in bed....only to be asked What's wrong with me....wow I think my problem could be cancer and chemotherapy. First Docetaxol today wish me luck. Started my dexamethasone last night.
Annie no poo post I miss them💩
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Sooner or later...
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My surgeon ordered genetic testing before surgery but my insurance company wouldn't pay for it after I already had it done. They said they don't cover things for research. Ugh
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Annie..hahahaahahha..I needed a good laugh
So finally get call back from MO office and the nurse tells me I SHOULD have gone to ER for my spiking temps..ya I know that when I'm not flat on my back but sometimes, when you're in the throes of a hot sweaty and delirious state, ya just don't think straight. I'm counting on others (like my dear hubby) but alas, he and everyone else will just stand around me, wringing their hands while I expire...geeze, am I supposed to do everything? I have to be the responsible one even when I'm stricken with cancer...
sorry..had to vent.
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Annie - The poop jokes: keep pumpin' em out.
All - I am long post-menopausal and will apparently be on AI for a long time after radiation.
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Halfway through my injections!
I had a nice rotation of friends stop by. The preschool teacher at the school my girls attend brought me down and stayed until the called e back for infusion. Two of my warrior sisters came for the beginning of infusion. They left and 10 minutes later my friend showed up with lunch. As she was getting ready go my mom came by. She left and then it was 1.5 hours alone. So not too bad.
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Catching up once again!
Saw my MO for my check up. Asked how Taxol will be. Found out that it takes 6 hours (especially the first round) because they infuse it really slowly and watch for allergic reactions. Great! Another thing to worry about. She said it doesn't happen very often and they have no clue why some react and others don't! Yay! 😜
I have my first Taxol on Tue. 😁
I asked about the l-glutamine / B VITAMINS and she said it can't hurt. She's very into supplements and is ok with my regiment which includes Juice Plus and protein shakes. So, now I'll add those two things to my program.
About the estrogen after menopause - I said the same thing. "How can I have any estrogen? I'm post menopause and have been for a long time!" (I'm 62 and went thru menopause naturally at 47.) Well, I guess it's made in your fat cells. Ugh! So we are still making it and maybe that's why they say if you are overweight you have a greater chance of getting BC. I'm not really overweight - except for that extra 10 (now 15) lbs so that's another thing that I thought I had going in my favor to not get BC. That's not true! Such B.S. Do they really know??
What I think I'm learning is that there is A LOT that they do not know! So we march on...
Loved the ring gesture! That was so sweet. I had a friend take off her pink BC tribute watch and give it to me a few weeks ago. She said she thought of me and people kept thinking she has BC when she wears it. (Great! Give it to someone who DOES have it!!) it was sweet but now that I think about it, kinda like a pity thing....I'm not thinking I will wear it! Can I send it to anyone of you??? 😆 Do we need to call attention to ourselves any more than we already do??
Hang in there and hugs for a good finish to the week and a poopy (or not) weekend!
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L-Glutamine users: what is your recommended dose per day? Here are Dana Farber Cancer Institute's recommendations for B6 and L-G:
I'm good on the B6 dosage. But the L-Glutamine I bought today is 500 mg per capsule. So (check my math!) I'd have to take 30 capsules to get to 15 grams, right? signed - math-challenged & confused
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I would add B12 if you are ditching multi vits especially. It also assists with prevention of neuropathy and is an energy booster. Liquid B12 is best as it absorbs better than pills. Amazon carries liquid B12.
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grey, yes, there are studies that AA women have a higher mortality from BC but also so much discussion about WHY, and delayed treatment, poor quality treatment are often discussed as factors.
I am just so uncomfortable with what you describe, your oncologist should be trying to eliminate the gaps in treatment, not resign himself to you likely having a bad outcome because you are black. That's outrageous.
I'm sorry, I'm not trying to create more problems, but maybe a different oncologist would provide you with better care
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this has 7 grams of l-glutamine as well as 7 grams of l-arginine
I am taking it to assist in wound healing (the chemo interfering with my surgery site healing)
It was suggested by a nutritionist & my oncologist & surgeon said it's great.
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