Starting Chemo March 2015

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  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    I think Herceptin is not as benign as they like to tell us. About every other Herceptin infusion hits me like a truck. No, it's not cytotoxic like chemo but that doesn't mean it doesn't have side effects. I have 3 more to go and I will be very happy when I'm done!

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Bekah, I agree. When I told the nurse practitioner what happened to me last time, I got more time listening to lungs and heart, and she asked me about shortness of breath, then started pressing on my legs looking for any signs of edema. I'm talking to the oncologist before the next one because if I calculated the dosages right, it averages to 17.33 infusions, and some doctors do 17 but mine is doing 18. So I want to find out why.

    So now the reactions I've had for the last two infusions are weighing heavily on my mind, and I am really dreading the last one, so much that I'm thinking about asking her if I should do a steroid with it. Ugh. I don't think they are heart related reactions, but are allergic reactions. Why now though

    My heart function has been 100% stable the whole time, but damn, why is crap happening on these final infusions? I rode my bike today fine, no issues, so I don't know what to think. I am taking Claritin just in case because we also have a Santa Ana here which is destroying my sinuses.

  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    I read somewhere that you need to continue monitoring heart function every six months for a year after your last dose. So, apparently there can be some delayed effects on the heart. I don't know why you are having trouble now and didn't before but it does sound more like an allergic reaction than it does heart related. Maybe your body has just had enough! I will have to add mine up but I think when I'm done I will have done 22 Herceptin infusions.

  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    I received the beautiful bracelet today. I held it to my heart and felt all of your love. I wish we could collect who added each charm and the meaning was. If everyone wants to PM me, I'd me glad to create a list. I remember hearing as each charm was added but can't remember who, or what it symbolized.

    Either way, I LOVE the bracelet and am so glad it made it my way.

    Katy, please PM me with where it is headed next.

  • neverthought
    neverthought Member Posts: 90
    edited February 2016

    I am so relieved that mammogram on my remaining breast was negative. I absolutely hated going to radiology and waiting around 2 hours for results but almost jumped for joy when they told me the results.

    Am regretting decision to get a fitbit because the heart rates are so alarming. Why the heck does it go over 110 every time I stand up? And up to 170 this week when I was trying to get my steps in and just walking around the block? Is anyone else having fast heart beat, dizzyness and palpitations? Have stashed the fitbit back in the drawer. All it did was remind me I don't get enough sleep (which I knew) and that I don't get enough exercise (I knew that too!)

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    Sue- I will send you the next address. I like the idea of a document here on who put what charms on and why. In our FB group, KSusan started one recently, but not everyone is in that group. I think you are in that FB group? Perhaps if willing, you could take the info from there and proceed?

    Neverthought- so glad to hear about the best mammo. Phew! I am alarmed at your heart rates though. Do you have any kind of regular pcp appt that might be coming up soon? Or perhaps ask in the exercise group what their heart rates are at rest, and at moderate levels. I'm sure it varies considerably, but if yours are high I think you should get it checked out. Are there any "target ranges" by age on the Fitbit site? Come to think if it, that should be fairly easy to google. Hugs.


  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    I can't find any file with bracelet info in it, only the file that Karen started on memo info.

    So I created a document called Bracelet Charm Contributions.

    For those not a member of the Facebook group, you can PM me what charm you added and the significance and I will keep track on Facebook.

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    Thanks for setting up the charm story document! It might be fun to share with BCO once we've made our whole circuit.

    neverthought, I think this goes without saying, but hiding the Fitbit won't make your BP go down :) I know it's an unpleasant reminder, but high BP is serious and I really urge you to talk about it with your doc.

  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    Here's what I've collected. If any charms are unrecognized, please advise.

    Member Charm Significance

    Katy F-Fuck Cancer

    Diane Bed-Insomnia

    Mary Ellen Angel Wings-All the angels on the board

    Eileen Poop-Never trust a fart

    Theresa Bike-Got her through treatment

    Carrie Hour Glass-All the waiting we did

    Amy Fatigue Truck-Backed up and dumped fatigue on us

    Linda Dog & Cat-Furry companions who stuck by us thru chemo. Shout out to Jack & Tutti

    Arlene Sun glasses-Had many problems with eyes during chemo

    Sharon

    Sue

    Also, I think our bracelet is nearing the end of its rounds. I would like to propose that it finds its home with Katy, who held us together over the last year. Thoughts?

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    I couldn't agree more!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    My darling sisters : Sue has most generously offered to re-work the bracelet (or make a new one) so that the charms are spaced evenly throughout, instead of all hanging on two large circles. I think this would be lovely, and is so nice of Sue to offer. She does lovely work. I do have some misgivings about losing the original bracelet in the process. Further, I think this is a decision we should all make.


    A little history (this is a copy/paste from some correspondence between Sue and I.


    Katy-"I had always thought the links of this bracelet (which was inexpensive) would accommodate small charms with small lobsterclaps. But I did notice over time the way they all got added to the two largest rings. I agree that aesthetically it's not ideal for showing off the charms. I would love to see it re-worked with a better facility to display the charms. But I think we must put it to the group, as this differs from our original intentions for it. And I would love to somehow salvage the original bracelet. The more I think about it, the harder it is to imagine part of it getting sacrificed. (This last 2 sentences are edited by me and not in my original note to Sue)

    Originally, when we had hopes for a reunion at Eileen's Arrowhead house, which hopefully will still happen someday, we were going to have some sort of ceremony together and commit it to the lake, forever burying all of our cancers, fears, and bad memories associated with tx, with it.

    I certainly never intended for it to become a personal belonging of mine. It belongs to all of us. Perhaps this could have longer temporary resting places but continue to circle around, staying with one person/custodian for up to a year, assuring the connection stays alive. Any regional get togethers, or even a coffee meet up with two people or more, could arrange to have the bracelet present. For example, at the Midwest reunion you are planning. What do you think? I will copy this onto the thread and get a feel from its joint owners.(Ed)

    You do such beautiful work and It is so thoughtful and generous of you to offer this."

    Here are the people not mentioned above who have had the bracelet

    Bekah

    Avmom

    Indygal

    I think that's it. Please anyone correct me if I left someone out. It was never a requirement to add a charm, and anyone who has touched it added their own magic and medicine.

  • molly1976
    molly1976 Member Posts: 403
    edited February 2016

    neverthought, I went through a few weeks in November/December where my heart rate was really fast and pounding, especially at night and after big meals. My MO was completely (annoyingly) unconcerned. I started trying to watch my diet more and take vitamins (including iron) every day and it is 99% better now. So I don't know what the hell that was. I've really noticed in the past month that I feel noticeably better, fitness-wise, than I've been thinking of as "normal" for the past year. I think these treatments really do a number on our bodies and it takes a while to fully recover.

    I bought my dream car yesterday, a little Audi! I've wanted one for a good 13 years and never would have gone through with it without this cancer diagnosis and it's "live for today" message, so that's something good to come of this! I love the car even more than I thought I would.

  • Trvler
    Trvler Member Posts: 3,159
    edited February 2016

    Congrats on your new car, Molly!

    My heart rate was noticeably higher on chemo but my heart issues were caused by the port. My heart rate has come down since I stopped chemo.

    Katy: I am sorry you are still in pain. It just isn't fair.

    Karen: Thanks for the link. I never take those cold medicines because I don't like the way they make me feel…Benedryl included. I rarely take anything except my 12.5 xanax which I need to stop. Not really doing much anyway.

    Bekah: I can't get enough frosted mini wheats. Bad, I know. I eat a bowl for breakfast and a bowl at night. I went through that when I was pregnant, too.

  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    OK, who added the airplane charm, Indygal???

  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    So aside from playing with the bracelet today, I decided I needed something sweet and didn't want to go to the store. I remembered I had some frozen cranberries and some oranges. So I made cranberry crumble bars with oatmeal and truvia brown sugar. It's still cooling, but my first little snitch was good--tart and still sweet. Will be great with coffee tomorrow!!!

    http://www.bettycrocker.com/recipes/cranberry-crumble-bars/7bb5a4ed-530c-4f8d-bbdb-77ea45852a15

  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited February 2016

    Molly, I'm an Audi gal too! I'm on my second now and I love it. Enjoy

  • eheinrich
    eheinrich Member Posts: 792
    edited February 2016

    Can we revisit planning a trip to the lake? It will soon be undergoing renovations (Alan didn't bolt the deck door, a storm blew it open and flooded the top two floors). While fixing that he decided to redo the kitchen. Spring or summer will be perfect with a fancy new kitchen and gorgeous weather. I am off after June first and the last week of April. But can make anything work.

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    June works for me. Beautiful up there that time of year

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    April no good.

    June could be really nice.

  • shaz101
    shaz101 Member Posts: 718
    edited February 2016

    specialk please help me... my lymphodema is getting worse. It never decreases in size. I joined a lymphodema page and posted a question about it. They have all come back and said my treatment was not good. And that I should have bandages on. The only lymphatic clinic here is 2 hours drive away. I go there 1 x per month. They measure my l-dex, do laser treatment and massage and send me on my way. Nothing is covered by our health care system and it costs me over $250 each time. Which I wouldn't mind if I could see some improvement. But it's just getting worse. They changed me from a class 1 to a class 2 sleeve just before Xmas. It hasn't helped at all. In fact it's made my hand and wrist worse. The women that responded said that the sleeve is only used to support the arm. Not to reduce the size and that bandaging is required for that. I'm so pissed off. I rang the treatment centre and asked them if they do bandaging... they don't! I want to stop going there and just keep up with my weekly massage at the local hospital. What's your views?

  • shaz101
    shaz101 Member Posts: 718
    edited February 2016

    Sue. I put on the 3 wise monkeys. To signify the sharing of knowledge and experience in a supportive positive environment .

  • shaz101
    shaz101 Member Posts: 718
    edited February 2016

    boo hoo, I want to go to the lake 😢

  • slothabouttown
    slothabouttown Member Posts: 449
    edited February 2016

    June works for me, pretty please?

  • eheinrich
    eheinrich Member Posts: 792
    edited February 2016

    June! I'm excited!!!

  • avmom
    avmom Member Posts: 324
    edited February 2016

    Sue, I added the jade Inuksuk (pronounced i-nook-shook), an ancient Canadian Inuit sculpture. My posting about the charm read, "Built in the image of man, they are a signature on the Arctic landscape of a hunter who has passed this way before. Symbolically, it says, you are on the right path. It is also an important symbol of unity, as the hands of many are required to build these massive stone sculpture. Each stone is a separate entity that supports, and is supported by the stones above and below, all secured by balance. It seems appropriate to reflect the unity and support we all find in each other on this site."


    I think it would be lovely to rework the bracelet so that each charm is displayed to its maximum. I also support the idea that Katy be the long term custodian of the bracelet. It might be that the bracelet will continue its travels for many years, as it continues to be a symbol of support long after our "annus horribilis", which 2015 will always be for me. This group has been a rare point of light in an otherwise dark time.

    I went in and had bloodwork done today - mostly checking on thyroid function. The cancer clinic mailed me apnote of another thyroid ultrasound - I think it is in early May. I had two thyroid biopsies last year, and the conclusion was that my nodukes were benign. However, even with this "incidental" finding, they will monitor it on a regular basis. There does seem to be an association between Breast cancer and thyroid cancer.

    Best wishes to all for a good day, today.
  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    I love it when something goes on after an infusion, and I call the nurse practitioner and she said oh no way it is related to Herceptin, probably contact dermatitis. Really bitch? I've had it twice on my port arm FOLLOWING a stinking infusion! Just so mad this morning. Thankfully it doesn't itch or anything, but seriously, does the below picture look like NOTHING? Not asking for a diagnosis or anything, just really mad I get blown off like I'm an idiot. I know what's going on even if the doctor's office doesn't. If I had been there in person I would have had a hard time not slapping her for her flippant attitude.

    Guess I will continue self treating myself. One left, I can't wait to be done, I am so done!

    Guess today I'm that old italian lady again who says a breadstick looks like a penis lol!

    image

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    So sorry, T! For the flippant attitude and the skin thing. You don't need that. Hey I am Irish mostly ad I think a breadstick looks like a penis too. You could bop that woman with a stale bread stuck!

    I will be so happy when you are done!

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2016

    Few things anger me more than healthcare providers who do not take our concerns seriously. We know our bodies better than anyone. You have a right to be angry!

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    I get so mad, I admit it. But seriously, if I did my job that flippantly or dismissively, I would be fired. It didn't help that the nurse practitioner on duty today is one that I don't like and I have always viewed her as superior acting and dismissive.

    Can I say it again - "BITCH!" lol.

  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    That sucks Theresa! If cancer has taught me one thing...its to be more compassionate toward my patients. At least it's not a systemic reaction. Should be fairly easy to treat but disappointing that they won't admit Herceptin could be the cause

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