Starting Chemo March 2015

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited May 2015

    Allison -- if it's any consolation, Taxol hasn't been bad. I started last Thursday, I was able to go to work on Friday, on Saturday afternoon I was a little tired but a nap helped and I've been fine the past two days.

    The only SE that I'm coming across is feeling bloated and gassy (as in can't contain the gas gassy). I've been taking my Miralax and hoping that will keep things tolerable. Passing gas at work would be embarassing!

  • ninjamary
    ninjamary Member Posts: 306
    edited May 2015

    Trvler,

    I agree about the whole Angelina thing. I'm triple negative (no BRAC1 or 2 mutation) and I did not get a mastectomy. I'm still debating it, but even removing the breast does not guarantee you won't get breast cancer as they cannot always remove all the breast tissue. It's a personal decision that isn't taken lightly. Also, you just don't get a free insurance paid genetics test because your mother had breast cancer. I was told when I received my genetics test that it costs $6,000! Even being DX with TNBC the test still had to be approved by my insurance company. I don't know about the rest of you, but I do NOT have $6,000 just sitting around in my fun fund.

    On another note. I've got a rash all over my shoulders and back. I have no idea if it's from chemo because my last infusion was 04/30. I have chemo training/school today for Taxol so I'm hoping the nurse will take a look at it. God help me if she says I need to schedule another appointment for the rash. The nurse is a bit of a bitch and I'm already imagining her response.

  • ninjamary
    ninjamary Member Posts: 306
    edited May 2015

    SC,

    Great now I'll have chemo farts! Ha ha. I'll take chemo farts over the AC side effects any day of the week!

  • Trvler
    Trvler Member Posts: 3,159
    edited May 2015

    Mary: I was also told insurance wouldn't pay but they said it would be around $2k. For some reason, they paid it. You should definitely appeal. They even sent me appeal paperwork but I hadn't even sent it in when they paid the claim. I don't know if it is because they found more cancer and a + node or what. I don't think I will ever know.

    Joanna: Everyone says it is easier. I guess I have a level of anxiety building. Until I get in there, I don't think that will change. But I am happy you are having it easy. I know you had a hard time for a while on AC.

    How was everyone's M day?

  • molly1976
    molly1976 Member Posts: 403
    edited May 2015

    My genetic test was $6000 through Myriad Laboratories and insurance denied it a full two months after the test was already done (great!), but then I called the lab and they said if insurance denies they make the patient pay only $375. How does that work?? It's a relief but I question why they are charging insurance companies $6000 since they seem to know it's outrageous.

    Trvler, I feel confident you will find Taxol so much easier than AC. I have #10 this week and I don't know if my body is getting used to it or I know more what to expect, but I feel like the SE are getting better the last few weeks. I am tired Friday afternoons but this week even that wasn't too bad. The rest of the week is more or less OK except for annoying stuff like a dry bloody nose and some intermittent digestive issues,

  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited May 2015

    HAHA! Guess I'll call them chemo farts!

    I'm working from home today, but not related to chemo. We've been in our house a year and since it's a new build the builder is fixing up items that are covered under warranty and need to be repaired due to the house settling.

    Now that I'm on Taxol I'm on a mission to lose the weight I've gained. It feels like the steroid hunger isn't as bad as it was on AC so it's time for me to try to get back in shape.

    I think we're all going through the "I'm sick of this crap" phase of our treatment. I was telling DH last night that I'm really tired of not feeling like me. :(

  • Trvler
    Trvler Member Posts: 3,159
    edited May 2015

    It's funny because on the back side of my AC, before I have my next treatment, I actually feel better than I did before. I know it is because I am working out more so I don't feel so shi$$y.

  • slothabouttown
    slothabouttown Member Posts: 449
    edited May 2015

    I hear you about the cancer on every tv show. And when I have friends watching with me I can tell it makes them squirm wondering if I caught the reference. I imagine that's something you have to get used to. It really is everywhere. I managed to get to the store yesterday to buy some pineapple since it was the only thing that sounded good. I realized when I was walking down the aisles that I looked like I felt. Sweat pants, too big ski cap, a dried up noodle stuck to my sweatshirt. I had stopped giving a fuck apparently. I said a little prayer that tomorrow would be better and that I wouldn't run into anyone I knew. So far both have been answered.

    In the course of my hermit weekend I found a new show on Netflix called Grace and Frankie starring Jane Fonda and Lily Tomlin. They released the whole season so it's ripe for binge watching. I'm only 2 episodes in so I don't have a lot to say about it yet but I love Lily Tomlin and there's no cancer so far.

    I'm glad for those of you who got some mothers day celebrating in. Sorry for those who had to put up with MIL weirdness.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    Sloth- I'm really glad you feel a bit better today.

    Everyone needs to accessorize with a dried noodle once in awhile.

    I hope today gets better and better for you

  • ninjamary
    ninjamary Member Posts: 306
    edited May 2015

    Allison - my insurance did pay! Whew. They would not have paid if I hadn't been previously diagnosed. They still won't let me have a colonoscopy until I'm 50 even though colon cancer runs on my father's side of the family. So on my 50th b-day I'll be laying sideways on a table. The chemo farts should be done by then. LOL.

    Regarding exercise. I'm signing back up to the gym this week. I'm flabbier, fatter and as weak as I have ever been. I'm done with it. I am going to start back up with lifting weights and will slowly work my way back into my cardio routine. My depression mostly stems from not exercising with a sprinkle of cancer thrown in. Don't get me wrong..I'm not clinically depressed I'm just lazy depressed. I still laugh and make jokes like crazy, but I'm so lazy anymore. Once I get back into my 4:30 am workout routine I'll be much better. Hopefully "golden"!

  • eheinrich
    eheinrich Member Posts: 792
    edited May 2015

    My insurance covered my general genetic testing but only a small part of the Oncotype test. I haven't received a bill yet, just the papers telling me what they allowed. So far they say I owe $2500. Since the reg testing was covered I didn't ask about the Oncotype & my MO at the time thought ordering the test was stupid so he didn't check anything in terms of coverage.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    yikes Eileen! Stupid bills on top of the MO thinking it was stupid? Stupidness abounds.

  • Carrie37
    Carrie37 Member Posts: 331
    edited May 2015

    Allison, I was the same way with starting Taxol. I couldn't believe it would be easier until I experienced it myself. I am happy to be done with the intense nausea. I still have been pretty tired. I'm not sure if it is because I over do it on the weekend or what but so far I have pretty tired on day four after infusion. I agree with the gas issues some diarrhea and a few bloody noses. I also have very mild neuropathy in my feet. Different from AC and way more manageable in my opinion. I had a good Mother's Day. Only unsolicited nutritional advice from someone at church: "Eat organic celery because I have read it has cancer killing power." Otherwise very nice day except for my lack of appetite and mild diarrhea. I watch murder/mystery shows to keep myself occupied. Found a show on Netflix called Bloodlines. Has anyone else seen it? My DH made me some blueberry breakfast sausage this morning. So delicious! The weather here is clody and rainy. Seems like a good time for a nap!

  • molly1976
    molly1976 Member Posts: 403
    edited May 2015

    I just finished Bloodlines on Netflix last weekend! Loved it!

  • ksusan
    ksusan Member Posts: 4,505
    edited May 2015

    Myriad is underwriting the cost for uninsured folks because they can collect more aggregate data that way, which helps them make the case to insurance carriers that the results determine a better fit between diagnosis and treatment type (which saves insurers money).

  • TerryMarie
    TerryMarie Member Posts: 77
    edited May 2015

    MarksGirl , I am using the Biotene spray and the mouth wash, it does help but there 's no getting rid of the mouth 'feel' I have. My fave foods taste freaking awful. Although tomato soup and crackers still works and happily ice cream is nice also. Kids got me a DQ Moms Day cake and I'm wolfing it down quite happily.

    My problems now, after chemo 5 (with one more to go next week) is diarrhea, it is brutal, every time I have to go I get the hot and cold sweats, a churning in my stomach and then the shards of glass exit. I've sat on the toilet crying more than a few times and I'm over it. Also I'm now sporting lovely red blotches on my face which is far from attractive. But I'm assuming that'll pass. My skin is suffering big time, hands, face, eyes and nether regions. I've been irritable and bitched out my primary care giver ( my mom is staying with me) and I feel awful and spend part of each day calling myself an a-hole because of it. I'm weak and have zero energy, tired but sleep is elusive. I'm taking gravol at night and I'm wondering if I should be using immodium for the diarrhea. I seriously have had thoughts that number 5 should be the last one but I know thats stupid. Big whining bag of doo doo over here.

    Hope youre all well.

  • TerryMarie
    TerryMarie Member Posts: 77
    edited May 2015

    Oh and to MarksGirl, the GERD issue that we're experiencing is very painful and unpleasant and I've stopped eating spicy foods, and I've eliminated onions from my food, Bland foods are the best for now I find , they don't hurt going down!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    TerryMarie- just wanted to send a little hug. I am so sorry you feel like doo doo.

    Ice cream! Yes!

    I would say also yes to Imodium. Those shards of glass will make you cry. If there's any way you can give your nether regions a bit of a break.

    Thinking of you.

  • so-she-did
    so-she-did Member Posts: 202
    edited May 2015

    Okay, I've got to hop on the complaint bus for a bit so that I can get all of this out there and get on with things. Read or don't read, I just need to say it.

    Like several of you, my oncotype has also been denied by my insurance, which is really confusing since this is the test that got delayed 10 days while waiting for my insurance to approve it! WTF!? The positive side of this is that the company that did the oncotype sent a letter saying that they will handle the appeal process for me so hopefully they can get to the bottom of this without my hand in it. Also, before they even ran the test they called to let me know that if my insurance denies the claim that there is a federal grant that will take care of all or most of the cost depending on how much we earned last year. From the posts above it is the same thing Myriad is doing, it sounds like.

    I felt pretty crappy all weekend so I watched a lot of TV. I couldn't find anything to watch so I settled on some old episodes of The Facts of Life (don't judge - lol!). Sure as shit, the episode I ended up watching was one where Blaire finds out her mom is waiting on biopsy results for breast cancer.

    Today I need to start dealing with getting all of my insurance claims together so I can get reimbursed for some of these expenses. This is right up there with doing taxes. Hoping I have the brain power to work on it today since chemo fog has been rolling in more often this round. It hit again yesterday while we were out shopping for flower seeds and new patio chair pads. I was trying to find out if the chair pads were UV treated so they wouldn't fade. It took my husband to point out that I was trying to read the Spanish side of the product description. I would have figured it out eventually....I hope.

    Like the rest of you, I am so tired of this F'ing cancer! I totally understand what Diane was talking about with feeling depressed, but not clinically depressed. I've had depression before and this feeling is different but definitely falls into the same realm, just milder. I, too, need to get my butt in gear and exercise more since I know this would help. I just can't seem to get out there and do it as often as I would like. I'm just so tired!

    Yes, I'm being a big baby today. Time to suck it up, put my big girl pants on.

    I've bitched enough so I'll tell you about my Mother's Day. I woke up in the morning with a gift bag sitting on the foot of the bed. Evidently my youngest didn't want to wake me. Once she heard I was awake she came in and laid in bed with me while I opened it. One of the gifts was breakfast in bed. Her kindergarten teacher had them decorate a lunch bag with a poem and picture and then in the bag was a juice box, a granola bar, a cutie, and a napkin. She was so proud! Both of the girls made such nice things and loved on me all day long. I felt truly lucky to be their momma.

  • wpmoon
    wpmoon Member Posts: 270
    edited May 2015

    TerryMarie - TAKE THE IMMODIUM! It's been a lifesaver for me as far as the big D - and I'm on Taxotere, so I've had it almost on a daily basis for the last two months. The immodium really helps. I've also used baby wipes to clean up after too many trips to the bathroom and to ease up the TP burn.

    Allison - cancer is fucking EVERYWHERE. Every single day, I hear someone telling a story about someone else they know with cancer, or hearing the breast cancer walk ads on the radio/TV. Last week at work, one of my coworkers was talking about how it's so unfair that some people live their lives without taking care of themselves (drinking, drugs, etc) and live until they're old and decrepit, and then other people who take care of themselves and are healthy get cancer at the age of 30. (I'm 27 and have cancer. My coworkers also don't know about my cancer, so this was an even bigger jab. Not her fault, but she hit the nail on the head about how unfair it is).

    A cancer commercial literally just came on the TV.


    Today I'm going to a yoga class that's specific to cancer patients that a friend told me about. Hopefully it'll be fun. Then tonight I'm going to Look Good Feel Better.

    Every time I see one of my friends, he tells me that I look good, better than the last time he saw me. And every time, I ask "so, did you lie to me the last time you saw me and I really looked like shit?" I know he's trying to be supportive and encouraging - but it just rubs me the wrong way. I don't feel like I look good. I'm puffy from the steroids, I've gained about 10-12 lbs, my eyebrows have to be filled in and I don't like the way it looks, my eyelashes are thinning, my face is covered in little whiteheads and scars from those whiteheads, and my hair is barely hanging on from the cold caps and it looks like crap. Sigh. Pity party over.

    Hope everyone had a great mother's day, and that we're all on the upswing from this past week's funk.

  • so-she-did
    so-she-did Member Posts: 202
    edited May 2015

    Oh, Terrymarie - one of my friends whose husband went through some really tough chemo recommended Maalox on a soft tissue for the burning nether regions.

  • TerryMarie
    TerryMarie Member Posts: 77
    edited May 2015

    Thank you for your responses, does the Immodium then cause constipation? I was constipated badly after taking Oxy for the freaking taxotere and that was a nightmare. Im afraid of that happening again. I took senekot and softeners and still it was like giving birth to a large farm animal. Im now steering clear of narcotics. I just hope the last treatment isnt as bad. Ya right.

  • Trvler
    Trvler Member Posts: 3,159
    edited May 2015

    SO: How old are your kids? They really get so excited about Mother's Day when they are young, don't they? That, to me, is the best part. I had to laugh at the bad TV reference. I am not judging. I was so desperate the other day I watched an old Love Boat. Worst show ever. The writing could have been done by a 9 year old. Everything so neatly wrapped up in a bow. But I was getting irritated because Nanette Fabray was pregnant and her hubby was looking forward to being an empty nester after raising 6 kids and she was afraid to tell him. I was trying to figure out how old she was because you know how those actors all seemed so old when you were little and they they really weren't? I looked it up and she was 59!! I was a like no f-ing way she was pregnant at 59. lol.

    My Jazzercise instructor does a trivia question each time and today it was what was the record for most babies born to one woman? 69!!! She was pregnant like 22 times with twins and triplets a few times. Can you imagine having 69 kids? Nuts!

    WP: I know what you mean about people telling you you look good. I know they do it to be nice. It is SO completely unfair you got cancer at 27.

  • Marksgirl
    Marksgirl Member Posts: 65
    edited May 2015


    Happy Spring!  Starting to get my voice back but still pretty gravely.   Thanks for the Biotine tips!    I am ever so grateful for these boards.   Friday developed huge welts after exercising.   I woke up very early Saturday  covered in itchy welts/hives - on my head, eyelids, stomach, chest shoulders and seat.   Like chicken pox only larger.   My fingers started to swell.   I had been red/allergicish from I am assuming Taxotere.   This hit 8 days after CT number 3 just like some ladies on the boards.   I took Zyrtek and it worked!!!!!!!!   It was even a generic from Target that expired in 2011!     One thousand thank yous.    I felt like Job when I was covered in itchy welts.   I could not have handled it.    I still have red dots but oh so much better.    If you have a rash/red dots or are red/warm, maybe Zyrtek will help a little earlier.     Blessings to you all!

    Jenny

      

  • so-she-did
    so-she-did Member Posts: 202
    edited May 2015

    My girls are 5 and 8. They were so cute about Mother's Day. They make you feel like a super hero!

    69 children?! I cannot even imagine!

    I watched Love Boat while in the recovery room after one of my surgeries. I used to love that show! "Love, exciting and new..." Anyway, I can't comment on how I like it as an adult since I was so loopy I don't remember anything from the episode other than I think Don Knotts was in it.

  • rleepac
    rleepac Member Posts: 755
    edited May 2015

    Popping feeling of 'shards of glass' could be a sign of an anal fissure. Should get it checked out!

    I'm hoping for a referral soon for the same problem. I it only hurt when I poop I can handle that but it continues to hurt for hours and hours after BM. Doesn't matter if it's a normal BM, D, or C - they all hurt!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    I'm practically rolled up in a ball. Day 5. Lots of body pain. Has anyone heard of using medical marijuana tincture as a topical, perhaps mixed in with coconut oil?

    Someone mentioned using mm as a topical but I don't remember who. It wasn't here. My mo head nurse says she doesn't care if I use it. I do have some, but I've never used it topically, and haven't tried it at all since surgery in December. Would it be stupid to try it? Adding the bone pain and fatigue on top of the ever present 4 month old mastectomy pain is just too much. I have to go to PT in an hour and I don't know how I'm going to get up. Ugh

    I looked it up on line and it says topically is one of the safest ways to use.

    Opinions?

    This is after CT #4 with 2 to go

  • so-she-did
    so-she-did Member Posts: 202
    edited May 2015

    Katy - I don't know anything about the tincture but mm is supposed to be helpful so I would say give it a shot. It already sounds like you've been given clearance to use it. Does it affect your ability to drive?

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    Amy- according to what I read (it was kind of a consumer advocate site) there are no psychoactive effects when used topically.

    I guess I'll try it. I live in Oregon. I think it's legal here now. Har

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    well, I think it helped a little. I didn't use much, but I'll try again later with a little more. My PT decided not to work on me today. She didn't think I was in good enough shape and was better off resting. Ugh. So it's back to the heating pad and waiting for this day to be over and hopefully a better one tomorrow

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