Starting Chemo March 2015

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  • avmom
    avmom Member Posts: 324
    edited February 2016

    Sue, I've had a teary day all day. I'm so tired I can't get to sleep. If you feel moved to chat, I'll be here for a while.

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  • eheinrich
    eheinrich Member Posts: 792
    edited February 2016

    Sue - Never ever go there. Ever. I don't even scroll through active topics any more. I just go here & to the exercise thread. Too much scary out there.

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

    Me neither. Never go there. I think I might need to avoid the Tamoxifen thread for a while, too. While I understand the concerns about efficacy, I can't worry about things like is my clock putting out a bit of light in the night. I am up about 4 times a night and I have to be able to see to get to the bathroom. The latest was that maybe magnesium is bad. Ugh.

    Av: Thanks for the update. She has a lot to think about. It would be hard to make all those decision. I was lucky in a weird way. Most of my dx pointed to some rather obvious decisions in my treatment. Or at least I thought they did. I guess the only decision I had to make that would probably affect my outcome was to do to not do the node dissection. I had to pick a side and go with it.

    Bekah: That's a nice story. Thanks for sharing.


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  • slothabouttown
    slothabouttown Member Posts: 449
    edited February 2016

    Allison, I'm having the same feelings about the tamoxifen thread. I was so comfortable and happy with the supplements I settled on like turmeric and magnesium, but every day there's something on the thread that supports some contraindication. Trying to keep up is exhausting and worrying about it probably does more harm than the supplements themselves!

    I've been thinking about popping up on a recent chemo thread to give some "it gets better" support to a group that's in the thick of the shit sandwich. I remember when we were losing our hair and feeling overwhelmed there were a few women on the other side of treatment who popped on and gave an update about their hair growing back and their lives after chemo. Those stories helped me feel hopeful that there was still some normal to be had down the road. Maybe I could pay it forward for and give someone else a little boost.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited February 2016

    Allison, the magnesium warnings on Tamoxifen board caught my attention too, but I decided I wouldn't pay too much attention to this, as well as "no light in the bedroom". I came to the conclusion that my MO said it was OK for me to take magnesium and he didn't warn me about the lights, so I'm good. He knows much more than I do about cancer and Tamoxifen's efficacy, he's been studying it and doing it for a living for years.

    Sloth, that's a great idea about visiting the most recent chemo boards. I remember reading encouraging messages on our board posted by women from March 2014 group and found them helpful. I'll have to gather my thoughts and pop over to March 2016 once it's up and running.

    I am getting de-ported today! Very excited and a little nervous, as it will be done under local only. I'll be wide awake and it grosses me out. I think I'll take some Xanax beforehand.



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

    BB, Congrats on getting deported!!! What a great milestone! I was sooooooo excited to get rid of that thing!


    AVmom, Glad you were able to go with your friend and help her to digest all of the info. Hopefully her oncotype will come back low, but being PR-, that tends to sway things and it may come back higher than expected. Don't tell her that, but do mentally prepare how to help her make decisions should that happen.

    I did the multi panel testing through Color Genomics and sent it in a few weeks ago. I am hoping to hear back within the next few weeks. They said 4-10 weeks, but it seems most people hear within 3-5. It seems people with no variants hear sooner which makes sense since a physician reviews things and they have to prepare reports and such. I already know I have 1 VUS, so I figured it might take a little longer. I'm hoping that's all they find. My dad was adopted. He's had prostate cancer, but I know nothing else of the medical history on his side.

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

    My motto has been to take what others say with a grain of salt and do my own research. Magnesium is so necessary for our bodies and we really can't even eat enough to get the right amount of it. The other thing I found is that D3 coupled with K2 helps women on AIs deal with bone pain, and I even found a UCSD press release saying they can find nothing wrong with taking those two substances, especially if it helps women stay on the AIs. I have gotten some good information from some women that I independently validated. When I ask my MO or breast Doctor about a supplement, I couch my question in the terms of will it interfere or not and they answer me. Most doctors won't say supplements help, but they will say if it will interfere.

    I mainly visit our thread, the exercise thread, a few of the alternative threads (although I end up blocking most of those because they tend to get ugly with bashing), Hair, Hair, Hair and the Lumpectomy Lounge. If I read any of the horror threads, I keep in mind most women do fine and the women posting there are outliers.

    Off to Herceptin soon, then only one more left!

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

    BB, hooray!

    1. You can block a forum. If you're signed in, its posts won't show in active topics.

    2. People post all kinds of stuff. You certainly get to know who is reasonably trustworthy, or what to check the research about. I have found many threads to be more opinion-based and anxiety provoking than I would wish, and I agree that staying out of them for awhile can be helpful.

    I have the morning off, so I'm going back to sleep now!

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  • pboi
    pboi Member Posts: 663
    edited February 2016

    Congrats BB on deportation! I felt so much better physically and mentally when the port was gone.

    I've been on the fence about magnesium supplements. I want to take them as I heard it helps calcium and Vit D absorption, and I have osteoporosis, but I already have bowels that are on the "loose" side, so not sure if I can tolerate the magnesium, guess I won't know til I try. I have labs coming up, anyone have their magnesium level tested?

    Edited to add: Nevermind about my lab question as I just discovered 99% of magnesium is in your cells not in your blood, so labs wouldn't help tell if you're deficient. Guess I'll just have to try it. Can anyone recommend the type of magnesium they're taking? I've heard absorption can be an issue. There are so many choices.

    PB

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  • avmom
    avmom Member Posts: 324
    edited February 2016

    Congrats on being deported! I can still remember the relief I felt when that bulge was finally gone. On the other hand, my port scar is the thickest, reddest of my scars. Maybe my PS can do something about it, when reconstruction goes ahead ( as of now, I'm assuming it will, but probably not until later in the spring)

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

    pboi, you just have to try different forms and find what works for you. I think everybody varies, some do well on magnesium glycinate, others do well on magnesium citrate, some on magnesium aspartate, magnesium threonate and on and on. if you take the right amount, it shouldn't cause diarrhea, so if it aggravates diarrhea, then you may be taking too much. I've also found that my level of sweaty exercise changes the amount I need, i.e., if I am sweating a lot I need more, if sweating less, I need less. But magnesium has surprised me on occasion!

    Getting extra fluid with Herceptin today because last time after infusion when I got home I got a cough that I couldn't control and some wheezing. I took a Claritin and the symptoms went away, but I came here today pretty nervous.

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

    My port scars are the most red/tender of my bc-related scars.

    Both MO and ND okayed mag citrate for me. I need it for calf cramps made worse by Tamoxifen. I'm using this one, which my ND says is more bioavailable. Her instruction: "To find out how much you need, start with the manufacturer's recommendation. If you get diarrhea, take less. If it is not helping your cramps and your bowels are okay, take more."

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

    Rofl, isn't everything about "take it until you get diarrhea? If that happens, cut back?" The number of times I've heard that recently....

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

    LOL. Have you ever heard Jerry's Seinfeld's bit about maximum strength pain relievers? Put in as much strength as it takes to kill me and then back off a little bit….

    BB: Congrats on deportation!

    Sloth: Yeah, I want to be a cheerleader for new people, too. I think that's a great service we can provide here.

    I guess the way I look at Tamoxifen (and I don't know that much about it) is that you may indeed have a cell in your body but the Tamoxifen will slow it. I have to believe if there were any things that stopped the efficacy, it would be on the label?

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  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    Avmon - Very difficult time for K and yourself. I hope her oncotype score comes back low. Mine was a 20 (low side of intermediate). I was so sure I wouldn't need chemo since my tumor was relatively small (1.5cm) and there was no node involvement. But my intermediate onco score led to me pursue a mammaprint test, which came back high. Worst month of my life. After much persuasion by 1 of my 2 MO consultations, I decided on chemo. I am glad I did, so that I have no regrets. I hope your friend has no preconceived ideas about having chemo. Had I known that genomic testing was a factor, I wouldn't have discounted it in my mind, and the decision to go ahead with it wouldn't have been so difficult.

    Hugs!

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited February 2016

    PB, my mo told me to use magensium oxide. I have not noticed it affecting my bowel movements.

    I am now officially port free. It was done in ambulatory care in the hospital, under local. The lidocaine shots did hurt. After that it was mostly tugging that I felt, and then the sewing of the wound. I was thinking to myself "I'm happy I took that Xanax!". And now I'm happy it's behind me.




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  • molly1976
    molly1976 Member Posts: 403
    edited February 2016

    BB, that's so awesome. I have 20 days until my port removal appointment.

    Do those of you who had a lumpectomy/radiation find that the cancer breast is still sore from time to time? It's been almost a year now since my surgery but I still have days with aches and/or zappy pains.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited February 2016

    Molly, I still have phantom pains in my amputated breast. Also, the other breast which had been reduced and lifted still hurts from time to time and it has been a year and 3 days. From what I read and heard, the zappy pains could be the nerves regenerating.

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

    Yay, BB!

    Molly: post-BMX, still zappy and phantom pains, and ribs on both radiated and non- sides still sore.

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

    BB- such great news!

    Allison- I'll have some of that Seinfeld special pain med. I still have considerable pain a year out. Burning, zapping, iron bra.

    Did PT. Did scad tissue mgmt. Did and do LE tx and MLD. Trying to deal with the idea that I may never be pain free. Sad.

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

    Allison, There are a lot of things that interfere with the efficacy of tamoxifen. They are not all listed, but a pharmacist should be able to answer the question if you have specific concerns. Several antidepressants interfere, and Benedryl (diphenhydramine) also interferes. I am not sure if this link will work, but I would be most concerned with the moderate to major interactions. It looks like a lot because every drug that has diphenhydramine in it is listed...and it is in a lot of OTC meds. http://www.drugs.com/drug-interactions/tamoxifen.h...

    Hopefully the link works.

    Katy, I am sorry you are still in pain. That just sucks.

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

    Thanks Karen. It does. I try not to complain as it doesn't do any good. I belong to a FB group of over 100 women with PMPS (post mastectomy pain syndrome). I have been following the group for over six months now. After reading so many case histories and seeing people getting their hopes up over all manner of meds, compounded creams, injections of various kinds, it seems for this sector of patients nothing really works. Almost everyone reports disappointment in the end. Though some say after years, most of the pain finally retreats. I never dreamed I would be so affected so long after surgery. For me chemo was easier. I know I'm in the minority and I'm grateful for that. i wouldn't want my friends to suffer any more than they already have

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  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    Had my baseline pelvic ultrasound (for tamoxifen) this morning. I didn't want to go. I'm so done with testing! But I went and got it over with. All looks good but my ovaries are 'dried up'. That was a bittersweet thing to hear. Good because it was affirmation for my hot flashes and menopause symptoms but sad because I'm only 44 and should not have dried up ovaries. Oh well...at least it was normal otherwise.

    A little tid bit about me...I'm currently addicted to rice crispy squares 😳

    Beka

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  • pboi
    pboi Member Posts: 663
    edited February 2016

    Thanks for the magnesium advice everyone.

    Interesting about the port scar. I have my BMX scars and thyroidectomy scar and it's the small port scar that is the thickest/reddest/itchiest one of them all. I wonder if it's because they cut through that site twice, once to put in and once to get out that makes it the most bothersome?

    Theresa...hope your Herceptin went better today.

    Molly...I've gotten those zapping pains every now and then too. Most likely nerve regeneration. Nerves can regenerate slowly, so I don't think it's worrisome to feel the zapping months or even a year or more out.

    Katy...so sorry to hear you are still in pain. I hope that in time your pain will get better. Hugs.

    PB

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

    Nope :), I have two separate port scars for in and out, and they're both itchy, tender and red.

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

    Herceptin went okay, they slowed the drip down and gave me extra fluids. Then in the evening, I got a slight rash in the crease of my elbow on my port side. When I looked it up online, said it could be related to either the Herceptin or the heparin. I only have one more, can I just stop being screwed with? It's making the last few infusions nerve wracking. But no other issues with coughing or wheezing like I had last time.

    My body just wants to be done I guess.

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  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    Ladies,

    I had to share this lovely clip that just touched my soul. I hope you all have a beautiful day!


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  • SueH58
    SueH58 Member Posts: 632
    edited February 2016

    Trying again. In case the picture doesn't appear, it's on youtube.com /embed/SN5c-m45fxs



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

    Glad it went well enough, Theresa, and glad you're almost done.

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

    T- riding along with you on the final stretch. It's been a long road but you've been a lighthouse for so many of us. Hugs!!!!!

    Sue- little birdie tells me to watch your mail early next week. Something special on its way to you. FINALLY!!!! Let us know when it gets there!

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