Lumpectomy Lounge....let's talk!
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HAHAHA!! Good idea, Michelle!
HUGS!
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I know I sound like a broken record, but 11 is NOT the “new standard" for what is considered “intermediate" for OncotypeDX standards. That is a misinterpretation of the partial and interim release of data in the TAILORx study. They released data for only postmenopausal (over age 70!) women with ODXes of 10 or below because that was a small enough group, with results showing so overwhelmingly that chemo was not beneficial and was unnecessary, that they didn't need to analyze that subset of patients any further. “Low-risk" is still considered 0-17, for Luminal A node-negative women regardless of menstrual status. So anyone at least in her 50s whose Luminal A (ER+/PR+/HER2-) node-negative tumor scored 11-17, especially grade 2 or lower with a mitotic rate of 1, can stop agonizing “should I or shouldn't I have chemo." You shouldn't. It's likely to do more harm than good (if any good at all). Get thee to the RO once you’re healed from surgery; and then fill that endocrine therapy scrip when rads are done. (You’ll be physically stressed enough during radiation—wait till you’ve healed from the worst of it till you start your AI or Tamox.).
Can't address the question of “pink nipples" as my tumor was nowhere near the nipple. I'm not due for a followup DexaScan for another year. I can't take Fosamax because of GERD that would be dangerously erosive if I took an oral bisphosphonate; I was given Zometa—and putting aside the fact that it took 5 attempts to find a usable vein to infuse it—I had severe “faux flu" from it. My PCP is going to bat for me to get a prior auth for Prolia (an injection, not an I.V.) for the next time—he has found that bisphosphonates (oral like Fosamax/Boniva/Actonel or I.V. like Zometa/Reclast) strengthen only vertebrae and not long bones, but injected biologics like Prolia/Xgeva strengthen both. But all bone drugs do help stave off bone mets—and slow or arrest the progress thereof should they already have happened. The infused and injected ones are more effective in that regard.
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Hi Lounge ladies - So sorry for not being here a while - but had a woop-de-doo with my first chemo on 9/14. Sucked/chewed on ice during it, but otherwise - just felt weird...couldn't put my finger on why/what it was, just felt weird. But we went and got soup after and visited a farmers market. Well...FALSE HOPE. Within 3 hours, I started feeling horrible. Now let me preface the rest of my story with the fact that when someone tells me I need to drink a lot of water - I DO. I normally drink 3-4 liters a day...so I just figured I had to double that for chemo. So after more than a gallon of water and some gatorade - it was about 4pm in the afternoon, and I was feeling really crappy. I tried to take a nap - but felt like my head was going to expode. I didn't really feel like i would throw up - but kept a bowl with me because I just didn't know what was wrong. I kept thinking - dang, this chemo is way harder than I thought it would be...I didn't think day 1 would have any bad reactions! Well - by 11pm...I couldn't walk. Literally - my legs buckled under me. I couldn't talk - literally I was BABBLING...and my whole body felt like I was exploding. My chest was tight, tingling...and my BFF finally said we had to go to the ER. So off DH and I went (altho I don't recall much of it). TURNS out - I had an extremely rare side effect of Hyponatremia. Sodium levels are supposed to be 135-145...and when I got to the ER my sodium was 117. I was already at risk for having a seizure, coma, or DEATH! Yikes! who knew! I was SO proactive and prepared to battle all of the SEs, that by drinking TOO much water - I flushed not only the red devil out, but all of my sodium too! They had to admit me - and I was in the hospital for 2 1/2 days on IV fluids of sodium and other electrolytes. Not a fun place to be dealing with days 1-3, especially because all of the home remedies were...at home! lol. Here's the bad thing. We actually CALLED the oncologist oncall too...and he told my BFF that what I was experiencing was normal and just tell her 'it will get better.' She was so pissed as she kept telling him - no you don't understand, her BP is wrong, her color is wrong, she can't communicate, etc. If we had listened to that on-call oncologist I could have been dead! So ladies - if you and/or your partners suspect ANYTHING is not normal, do not hesitate...go to the ER and play it safe.
Not sure I can decipher what was a chemo SE or the effects of getting over the hyponatremia. The ER was such a blur - and I remember trying to talk, but the only things that would come out is 'baahbahbah.' It was freaking me out - because I wanted to say stuff - but couldn't. I am just glad they figured it out..and by Day 5 I was feeling pretty fine. In fact, I haven't had that many SEs (knock on wood). Some mouth sores, my vision definitely worsened, on Days 5-9 I had a racing/pounding heart/pulse, but still was able to work and exercise (by exercise - I just mean a walk around the block...lol), and then on Day 9 & 10 I experienced a weird throbbing/pulsing at the base of my spine. It didn't really hurt though. My MO is having me try salt pills for chemo#2 (this thurs, 9/29)...and wants me to not drink as much water. Sigh. At least I know what to look for if it happens again!
I had my daughter chop off a hunk of my hair last Thursday - and she did a pretty good job for a 12 year old! Then when I went to get my wig on Friday (which I hate - but that is a whole different post!) the stylist took it even shorter. See pics below.
Stylist cut it shorter to this. Day 13 and I still have full hair...but waiting for it to go any day now!
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KDTheatre, that was some reaction! OMG! I'm so glad that you got the care you needed in spite of that ass of a doctor. I trust you will complain to your MO about that person. They shouldn't be oncall ever again. I wouldn't have thought to ask HOW much water. Your hair looks cute. At least you are semi-prepared. Take the wig experience was less than stellar, too. Find some scarves - you may discover you are more comfortable in them for most occasions. I know my mother preferred scarves though she wore her wig when she dressed up. Keep the positive attitude going and tell those damned drugs to do their job and KILL CANCER!!!
HUGS!
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kdtheatre, you look beautiful! Sorry about your having to be hospitalized, too much water is very dangerous.
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KD, I think your short hair is so adorable! I feel the same about the 2 wigs I've bought. I liked them in the shop but hate the feel and everything about them now. Did you buy human hair? I bought 2 decent synthetic ones, but I'm wondering if a human hair one would look better. So glad you got to the bottom of the problem with your sodium.
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Michelle, glad you're onco score was low.
kdtheater, yikes! Glad you listened to your friend and not on call oncologist and they were able to figure out what was going on. Haircut looks cute! Hugs!
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Thanks girls! I am watching the debate, because I need to keep my health care coverage that was obtained through the Affordable Care Act. I realize what riders and pre-existing conditions insurance companies used to deny, which kept me on a $900 a month policy - just for me. My family now pays $950 for all four of us, I am not ridered and pre-existing conditions are not allowed to be considered when applying for insurance. We are self employed with various business interests and have tried to have corporate insurance. I am very thankful, especially right now, that I have good insurance. It is expensive to have surgeries and treatment for bc - abnormal cells.
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Bob & I are on Medicare, but Gordy has an ACA plan. He has asthma, chronic depression and the beginnings of a bad back (four years older than when mine started). He is a walking pre-existing condition, and we simply can’t afford to lose that very important ACA protection. None of us American bco sisters under 65 can.
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Amen to that, Sandy. I've been so thankful I was on Medicare when BC struck. I can't imagine what it would have been like if I were younger.
HUGS!
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Michelle, I like your idea of the MRAP... just plow over that cancer... get rid of it once and for all...
kdtheatre, you look great.. sorry you had such a bad reaction, but glad you got help in time. One more week for my onco score... and should be healed more... maybe not look like an apricot so much..
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Can you imagine if all bco sisters were ridered or not covered at the time of the bc diagnosis? Some would wait to get grandfathered on the insurance, and then get diagnosed and treated. I read an article regarding the wait time between diagnosis and surgery, if left too long the bc patient could advance another stage or grade. Cancer is not static, it does not slow down just because you are not covered by insurance. Timely medical care with good providers is necessary. The ACA allows us to have that coverage, timely, and access quality health care professionals.
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Michelle, I'm waiting on insurance too.. I have united healthcare advantage, but am going to the supplement instead, it's supposed to cover more... and then i have to have something to cover the prescriptions... if i can't afford it, i don't get it.. I'll be glad when this is all over, finances drive me crazy...
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IHGHAnn, are you using the affordable care website for your supplemental? Would the supplemental cover your medications? Are there any good discount plans for drugs? I really like Blue Cross Blue Shield. They have paid just about everything for this bc.
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I have a Premera BC medigap F plan and use AARP for my prescription. I haven't paid anything for my BC tx - only prescriptions. My generic Arimidex is $12/month I think it is. Maybe 14. Medicare policies are generally not available on the ACA sites. Medicaid ones or subsidized Medicare might be but I pay for mine so I don't know the ins and outs.
HUGS!
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I have the United health care advantage right now, but will be going to the supplement they have. It's plan f too, so I should be paying less. The rx I need to find out what meds I'll be taking..
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Michelle, “advantage" plans are all-in-one Medicare-plus-prescription coverage, sometimes called Part C. The advantage is that they're an all-in-one combo of a Part B supplement (which covers most--and usually all, after the carrier negotiates with the provider--of the patient's co-pay under Part
& Part D supplements, often at a lower premium, with a single bill. The downside is that they are usually HMO or other closed-panel managed care plans with hefty costs for going out of network. Judy's talking about converting from Part C to separate Medicare supplements for Part B & Part D. It will cover any provider who accepts Medicare, and Part D carriers have a wider network of pharmacies and generally larger formularies (covered drug lists) than do Part C plans. But even if you go with the same carrier for both the Part B supplement and Part D, you get separate bills. At 53, you don’t need to sweat this stuff yet.
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I'm off to Seattle! I took a page from Sandy's book and got a wheelchair. The thought of schlepping my computer bag, CPAP, and cane the mile & a half march to the Delta concourse in the Atlanta airport makes me shudder.
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That's awesome Poodles!!
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Peggy you are spot on with your description of my MO cold fish is correct. I would dump her in a heartbeat if I could. I see a few battles ahead with her .
Mustlovepoodles I am hoping to get through the next 12 weeks the Chemo nurse told me this chemo would not be as severe as the last chemo treatments I had with the throat but I only had 3 treatments of that and was so sick during it but I kept my hair with the last one just lost hair from rads around the back of my neck it came back dark and curly the rest is white and straight looks very odd.
Elizabeth I do take a list of questions with me but the woman talks in circles and I am more confused after speaking with her then I was before I asked a question, she is more like I recommend the treatment and I know best. I just cannot warm up to her
Hi to everyone and hope all is going well.
Char
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KD -- Love the hair ----- I am so sorry you had to face this. I am glad all is in order now. I found the new recommendations for water consumption that might help for the future.
"How can you know if you're getting enough water to keep your metabolism cranking at peak efficiency and your digestive system functioning? The formula used to be "one size fits all" -- eight 8-ounce glasses of water a day. But that's changed, experts say."
"It depends on your size and weight, and also on your activity level and where you live," Nessler says. "In general, you should try to drink between half an ounce and an ounce of water for each pound you weigh, every day." For example, if you weigh 150 pounds, that would be 75 to 150 ounces of water a day. If you're living in a hot climate and exercising a lot, you'd be on the higher end of that range; if you're in a cooler climate and mostly sedentary, you'd need less."
Charlene -- I found a tape recorder app for my phone. So I record all my meetings with my MO.. That way I can listen to them in a quiet place and investigate anything I am unsure about. Happily, my MO has been awesome and I see him every two weeks right after my blood test.. He asks if I have specific problems and how I am feeling. I have been extremely fortunate with my roll of the dice. He was recommended by my BS as was my RO.
Poodles -- Have fun on your trip.
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Poodles, smart of you to get a wheelchair. Airports are designed for 20 year olds with great speed and stamina, not for those of us over 50. We have so much stuff to schlep around. And geez, having 10 minutes to run from one end of a terminal complex to the other, not finding any transport, just doesn't work for me anymore. Have a great time with your sister! You need the break.
HUGS!
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Sandy, when DH and I were trying to figure out what Medicare insurance to buy, the independent salesman located in the Blue Cross office told us to get the Medigap F plan and we wouldn't pay a dime in copays. He was right. My AARP Rx plan has gone up significantly (no surprise considering how drug companies have raised their prices on older drugs and the new ones are exorbitant).
HUGS!
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Re insurance, I posted last night in a different thread that I received an insurance statement for the month of July yesterday. Just one of my chemo treatments listed a hospital submission of $30,000 for the days infusion and $5,000+ for the neulasta. But so far, I've only paid $135 for my diagnostic mammogram. I started Medicare May 1 of this year, and discovered the lump on May 18! Man, did I just squeak in under the line! I have Blueshield Supplemental and AARP prescriptions. My plan is a PPO however so that I can choose any doctor or facility rather than an HMO. It's worth a little more monthly for me to feel I can go anywhere to select a doctor.
I'm finally coming out of my #3 funk. It seems to be the pattern with others that #3 is one of the hardest. I sure hope #4 (and last YAY!!!!!!!) is not harder! I'm really ready to get back to my old activity level.
Kd, has your doctor mentioned anything about using anything like SmartWater or a water that has electrolytes in it? I see people drinking that a lot and wondered if it helps? I picked up some Propel flavored tubes and tried that since water sometimes just doesn't taste good to me. I find I keep at about 100 oz a day. No soda though. I used to be a Diet Coke addict but completely swore off that when dx.
Any of you who went through chemo and purchased a wig, did you go with human hair? I'm wondering since it seems that it's quite a while, almost a year, before hair is really grown in enough, if it's worth the investment. I have a couple of synthetic ones but just don't feel they are comfortable. I'm fine with scarves, but I know there are times I just want to feel normal.
Poodles, have a great trip! the wheelchair is a smart idea.
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ElizabethAM thanks for the water info - is that for during chemo, or just overall in general? That is still around 5 liters for me then, if I am doing the math correctly (I weigh 165).
Dara - I did drink gatorade (although I despise it so) the day of chemo too...but apparently may try and drink more this time around. I am not sure about SmartWater. I was trying to avoid sugar, and don't like any of the diet sugars either...so most of those electrolyte drinks bother me. I tried on some human hair wigs, and despite being super expensive...they looked super bad on me. Since I have already shared funny pics of me - see my human hair pics below! Too weird - even though I know you can get it styled to be more like your hair. I wound up going with a synthetic wig, but I was worried it was too blonde so chose a different color...which was a MISTAKE. As now it is far too brown/red (also see below).
HUMAN HAIR wigs (uh...no, lol):
Wig I should have got, but thought it was too blonde and the roots were too dark (forgive silly faces):
Wig I wound up with - and regretting the color choice I made...but now stuck with a $500 wig that I just feel so weird in...only due to the color! So not to those still shopping - don't veer too much off of your normal color, unless you are used to having different color (I have never colored my hair anything dark, so it is def weird).
Btw - I have to share how much I adore you ladies - this board is the best. I tried to do the Triple Positive board, but it stressed me out too much...so I got off. I know I am beyond my lumpectomy issues, but feel bonded with you all. Thanks for all that you do!
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KDTheatre, love your wig photos. The wig you chose isn't bad. Maybe you just have to get used to it. Can you color it with the hair color you normally use? Many of us here are way beyond our lumpectomies and stay here because: we want to share our experiences AND because we love the comaraderie we've found here. Please stay with us!
For those of you just starting on your breast cancer journey, you will find that we are upbeat and positive but also tell it like it is. We have different experiences, treatments and lives so you will likely find someone who has walked the path your are starting out on.
HUGS!
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Kd, I know the feeling. I"m now stuck with 2 $400+ wigs that I'm not wearing. Everyone else's wigs look great. Maybe we just feel that way about our own because we know it's not our own?
Oh, and Michelle, Sandy, and Judy, sorry, I went back and reread my post with opinion about onco scores. Sandy is absolutely right. I thought I posted recent research but said standard. Thanks for the correction Sandy. I went by the current standard and still had decided not to do chemo until they did an additional test. I guess time will tell if it was the right choice. Please blame my incorrect term on chemo brain! lol See, Michelle, one more SE you can avoid!
This site is the best and I think anyone who underwent a lx at any time should be here. I too have to stick with positive upbeat threads for my own sanity.
Here's the RESEARCH article but it has not been adopted.
http://www.breastcancer.org/research-news/oncotype...
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Dara, in my opinion, there will always be some researcher, phd, who wants to take a look at a "normal" value and see how they would tweek it. They take the devil's advocate approach and say, let's lower the number (whatever it is) and see if the participants do better. On my score sheet it says RS score of 14, with Tam 9%, and there is no factoring of radiation into the equation. At the bottom of the page it says that this laboratory is regulated under Clinical Lab Improvement Amendments of 1988 as qualified to perform high-complexity testing. On the studies (that you pointed out) performed suggesting a lower number in the new range, I did not see where they were overseen by any governing body.
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KD, that wig color is fantastic! I think it looks wonderful on you.
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Right Michelle. I think you have to drill down with the BCO article to the abstracts and articles from Clinical Oncology Journal etc for some of the background info for this study. Over the years, I've watched so many changes in tx for bc and I'm sure we've only hit the tip of the iceberg. I'm participating in a couple of studies myself through CoH. I think Peggy has said it frequently, we all just need to make the best, most informed decision we can and then not look back. I was coming off the last 4 years of supporting my older sister with bc and just lost her in October. For me and my family, it's all about doing whatever is needed to have the very best outcome. A crystal ball would sure come in handy!
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