Starting Chemo September 2015; join us!
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mom2, my recommendation is to ask your MO to help fight the insurance. I am well over 50 and they are paying for it, although MO's office told me there was initially a bit of resistance....my daughter needs for me to have it. And my granddaughter.
Hugs.
Octogirl
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It costs about $3000. My insurance refused. My BS office has a fund. The office called the genetics lab and got it down to half price then the charity fund picked up the rest. The place that did the oncotype testing has a fund too and pays your copay if you make less than 132k with 4 person household.
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I'm in the same boat.
In March we were supposed to go to Florida for vacation - we had to cancel it due to a big snowstorm that hit the day we were supposed to fly out.
We were then going to Aruba in September, that was cancelled to so I could start chemo.
I work full-time and haven't had any time off this year, now this. I really want a vacation from all this and just regular life.
I told my husband that I want something to look forward to...but because there's still so much ahead after chemo is over (my last chemo is literally on New Year's Eve!!)...surgery, radiation, reconstruction.... I have no idea when we will be able to plan anything.
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I too had to cancel a trip to Ireland because of chemo. Of course I've never paid for trip insurance thinking I'm bullet proof
Luckily, I was able to get some of my money back, minus $800 'land and air' fee. Oh well, better than zero.0 -
the second I'm done, completely done and declared disease free I'm booking myself a cruise and I'm going by myself. It would be heaven to just be on my own and not worry about how other people feel or have to be touched by doctors and lab people. And to get away from all the sad family pity looks.
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Mom2...there are also LOTS of genetic testing studies out there that provide free genetic testing to women who have cancer and their families. I worked on one years ago. If your hospital is not a research hospital, call the closest research hospital or cancer center near you and ask if they have any genetic testing studies going on or if they can refer you to one.
Also - The Affordable Care Act requires insurance plans that began on or after August 1, 2012 to cover genetic testing costs (when testing is recommended by a provider).
The company who created the tests also has a financial assistance program - https://www.myriad.com/myriad-cares-2/financial-as...
The cancer resource foundation also provides financial assistance for genetic counseling if you qualify: http://www.cancer1source.org/genetic-testing-programs
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I had my genetic testing done. It tests for 17 different gene variants these days.
I don't have BRCA1 or 2, but I do have a variant in a gene called BRIP1. Unfortunately, they don't know very much about this gene yet. They don't know if it has a causation effect on breast cancer, but it's in the same pathway as BRCA.
It's really frustrating to know this, but not know what it means or if it should impact my treatment. That said, they are learning more about it every day and I've seen some recent studies that may link it to ovarian cancer. I'll be talking with my doctor about it tomorrow. Since I'm triple +, I'll be having ovarian suppression for a long while. I'm interested to know how that might impact this.
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Thanks octogirl, AnnieB and edswmom you guys are awesome! Now at least I have some information to fuel my fight! My brother said his oldest DD had some genetic test years ago that used to tell you about BCRA but the company has since been told it cannot give out those results. At least she knows.
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I feel like shit. Nuelasta is from hell hands down!
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Of course the company who created the tests has financial support. *gags* They used to be the only game in town. There are other hospitals/companies getting in on the game if you're willing to shop around. I just don't know how feasible it is when you're so far from a cancer center. But with the ACA clause, any provider worth their salt should check family history and recommend genetic testing to ensure coverage. Not that you really want the answer. Everybody hopes it'll come back clean. *still crossing my fingers for my siblings*
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I had genetic testing done right after I saw my second bs for a second opinion in May. (The first bs told me I had BC over the phone on my moms bday when I was in a crowded supermarket.) They wanted testing done because of triple neg, age 44, background, & fam history (mom & grandmom BC at 69). It was done at my treatment hosp which is a major research facility. It was done by a genetics nurse thru myriad. Took 2 weeks for results and was neg for brca 1&2. They recommended further testing because of triple neg but said its ok to wait. The whole thing was covered thru insurance.
As for vacations I had already booked a last minutetrip to Vegas in April before mamo. Mamo was actually a 6mo follow up to my oct 2014 that found a benign looking nodule. I actually forgot I had scheduled the follow up mamo before the trip. Had mamo 4/21 found nodule again, scheduled biopsy for 5/5, and went to Vegas on 4/27. I can't remember why I thought to go away would be ok.
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cripes Annie I swear it's worse every time. I call it the nastia. It'slike getting kicked by a horse and having every bone in your body broken.
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I feel like I'm wearing a shawl of pain. It hurts everywhere exactly where a shawl would touch and wrapped around my neck too.
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I have an unstudied BRCA2 variant, so my results are inconclusive. My insurance company was fine with the full panel (not just breast cancer genes) because my mother died of colon cancer and there's a LOT of cancer in my father's family.
Vacations? What a lovely thought. I'm hoping that at some point in the next few months, we can manage a weekend away. We did go backpacking three weeks after surgery, and sleeping in a tent by the river for a few nights was exactly what we needed. Christmas at the in laws (3.5 hours away) is iffy. It should fall on a good weekend for me, but I'll be on Taxol by then and have no idea what that's going to do to me. It will be OK regardless.
Annie: I did not enjoy my Neualsta shot today. I hope it works better than last time! And that yours treats you better. Your last one was downright mean, wasn't it
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So Annie--you just wanted me to really empathize with your anaphylactic reaction to the taxotere, huh? Yup..had it today. Luckily, as soon as they stopped the drip and gave me a steroid, all was fine. So after I recovered and my amazing nurse calmed me down, we did a slow drip and all was fine. The nurse even stayed after her shift to make sure I was good through everything and sent me home with lollipops for my daughter. Love Amy the nurse! Dislike reactions to taxotere! After being at the hospital from 9:30-5, I'm done and halfway through. Wohoo!
Katie: how'd it go for you today
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Jabe, you had no issues prior? Is this your second treatment?
So scary to think you could be fine one session and not the next.
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hazel nut-yes, this was my second with no problems with the first at all. Weird! The nurse said I'm clearly very, very sensitive but once it happens the first time, it doesn't usually happen again. Yea?!? In the back of my head, I was worried since Annie had this happen so I had my friend stay with me when they gave it to me (her lunch had to wait). So glad I did as she sprinted for the nurses in seconds (and made me feel less scared). Now my poor husband feels guilty that he wasn't there.
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And now I'm spotting again! WTF?!?
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We had plans to go back to Minnesota this coming summer. My MIL has Alzhemizer's and it's been a few years since we have been out there. With all of my treatment though, I probably won't have the vacation time.
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Meant to go away next Friday to celebrate our 25th wedding anniversary.We were going back to where we spent our honeymoon. I dont feel womenly I cant see our anniversary will be much of a celebration. I feel sad alot of the time. Ive transformed from a 'young' 47 year old to a 60 year old in a matter of weeks and Im scared I'll never bounce back. Glad I was able to tell you guys how I feel....you totally get it. Onwards with the day where I put on my brave face and everyone thinks Im so strong.
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skittle- I am in October 2013 mom group. It is the best. So glad you are getting support from those ladies too. I love my group but sometimes it can be hard to relate. I feel like my life stopped and everybody else's kept going.
I was supposed to go to Hawaii this summer but had to cancel to do surgery. My in-laws were going as well. My MIL said she knew I would find some reason not to go. Hmmm. Yes because getting cancer and having a boob cut is so much better than Hawaii.
Dh has to go on a trip about 10 days after my last infusion. He asked if me and my daughter want to go with him since plane tickets are on sale. I really want to go but I also know I am pushing my luck.
I woke up to my arm more tender and swollen. MO office told me to come in to look at it. They drew a line around the red, told me to put heat on it and sent me on my way. They still want to try a different vein a ltitle higher up. I wanted to try a PICC. I am trying desperately to find a way to get back to the Cancer center where I trust them and had surgery. I don't know why I live in an area where I don't trust most of the medical professionals.
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Jabe, how scary!! What was your reaction? I was under the impression that the opposite is true: if you have a reaction you are more likely to have it again. I'd discuss with the MO, I think.
and now my fingernails feel strange which is making typing hard. I hate this ()*()*
Octogirl
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octogirl: I will definitely discuss with my MO at my next appointment. Basically, I started to just feel funny like a bizarre tickle in my lungs/throat and then it increased where it seemed to start to impact breathing but I could still talk and all. My friend said my chest and neck turned bright red
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Jabe- I had a bad reaction my second infusion. They gave me steroids & Benadryl, stopped for 20 mins and restarted it but ran it slower. I just had my third infusion next week. Before they gave it to me the gave me Benadryl, Ranitidine and Hydrocortisone via IV before the Taxotere. I would check to see if they are going to give you extra meds before your next infusion. It is more likely to happen again if they don't take precautions. Just be aware and ask questions. You don't want to have another reaction. One was enough for me.0
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This was last night off my deck. I stood out there for the longest time. It made me forget about all this crap caused by chemo. In this moment I just felt connected and alive. I am determined I am not going to let this crap stop me from living.
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TFoxy - That is gorgeous!!!
Y'all have been busy today! I met with my MO today and we discussed my last round. She added Zofran to my meds to help with the nausea in the early days, so hopefully that helps. My white blood cell count was super high, so I guess that hellish Neulasta did its job. And the best part - she examined my tumor and said it feels soft and smaller. Yay! I've been mashing on the damn thing so much, I'd convinced myself it was bigger, lol. Oh, and my sweet hubby asked her why I still have so much hair. Isn't he sweet? She assured him that over the next several days, that will change drastically. Can't wait
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DeeRatz: I will definitely talk to my MO before the next transfusion. Thanks! Id rather some precautionary pre-meds
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TFoxy...WOW..breathtaking. How amazing to be able to see that from your home!
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TFoxy, someday I want to see that view in person.
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I was on a wig buying binge after my first infusion and got this yesterday. I'm liking it even though its much shorter than my normal hair. It is shorter in the back with the front coming in longer. It is so incredibly comfortable and perfect for around the house, or a run to the grocery store, when a hat or scarf is more trouble than its worth. This slips on easily. The headband is attached.
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