Starting Chemo March 2015

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  • shaz101
    shaz101 Member Posts: 718
    edited January 2016

    avmom thankyou for your tips. I bought a portable air conditioner, it's making a big difference to my comfort.

    I will try your stretching tips. I also have cording. It's better than it was, it's just tight. I'm a bit worried about my shoulders as they aren't great, but I will try and hang from a doorway. That sounds like it'll be helpful. And I haven't tried living on my side. So I'm about to try that. I hope you LE continues to stay under control.

    I hope you're all having a lovely weekend. Katy, are you out and about now that your sight is better?

    Hugs xxx


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  • rleepac
    rleepac Member Posts: 755
    edited January 2016

    Went to a wedding tonight. Had a great time dancing but I'm going to pay the price for at for the next few days!

    I have a confession...I went off the Tamoxifen for this past week. I just wanted to feel normal again. Problem is...I don't! I still have aches in my hands and knees and I still have back pain. I still have hot flashes every hour too so I guess all those symptoms are not related to Tamox. I'mgoing to give it another week but it's looking like in just getting old and menopausal on my own...oh joy.

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

    KSusan- wise as always.

    Neverthought- I had both corrected for vision. I had a taste of the one near, one far, in the month between the two surgeries, and found it distracting. My Opthamologist gave me the option up to two days before the second surgery to decide. I don't mind wearing glasses to read, and I enjoy the long distance triangulation benefit for my casual birdwatching and such. Healing is going well so far. Yesterday we had a power outage that lasted into this morning. I was able to read (since I had exhausted all battery power) with a flashlight in bed with an old pair ofreaders. Haven't done THAT in donkeys years! The novelty wore off quickly , though, as I had very little edible food that didn't require a heat source.

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

    Bekah- not that I'm encouraging you to stay off the Tamox, but my understanding is that it had quite a long half life and it may take up to two weeks for the level to come down (and I suppose, therefore, SEs) and you to feel different. I really felt much different after a month off.

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  • avmom
    avmom Member Posts: 324
    edited January 2016

    Hi, Sharon. Don't hurt your shoulders - my lymphedema therapist didn't recommend using your whole body weight, but just to start with a full stretch and add a bit of body weight to put some traction on to increase the stretch. I haven't been able to lie on my lymphedema side comfortably since my mastectomy and ALND, which has been an adjustment, as that was the side I slept on. It just feels strange, and swollen, to lie on that side now. So usually, I lie on my left side, and elevate my LE arm. I have no idea whether it reduces the swelling much, but it feels more comfortable than other positions.

    Katy, it's great to hear that your cataract surgery is done and has gone well. I know many people who have had that surgery, and all are very positive about their experience. Now that the power is back on, make yourself a wonderful brunch. Your food pics show that you are an artist in the kitchen.

    Rlee, glad to hear you had a good time dancing. I'm sorry to hear you are still having joint and back pain. Tamoxifen sounds like a hard path.

    Gentle hugs to all.
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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    MO said occasional grapefruit is fine; just not to make them part of my morning routine. Benedryl also is fine for occasional use as needed, but you wuold not want to use it as a sleep aid, and diphenhydramine is the active ingredient in a lot of OTC sleep medications. I think it's more of an awareness thing.

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  • pboi
    pboi Member Posts: 663
    edited January 2016

    Bekah...sorry that you're continuing to have pain. Hope you can find relief soon. My oophorectomy meant instant menopause for me and it sucks! Between that and the Arimidex, my body is missing the estrogen. It's been hard to deal with the side effects and accepting this is just how it's gonna be now, so I understand. Hope in time I learn how to manage better or maybe it will get better.

    Katy...so happy to hear you're healing well. Wow, thats a long time to be without power. Glad it's back on. Hope you're able to get out soon and restock your pantry, just in case it happens again.

    PB

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

    pb, I have found that my hot flashes have decreased with time (either that or I have figured out how to decrease them); I hope yours decrease soon as well!

    Katy, Glad you have power again. It is COLD here, but thankfully no storms like you've experienced.

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  • eheinrich
    eheinrich Member Posts: 792
    edited January 2016

    I find my hot flashes hang out for a while and then go away. About a week ago I had them all the time. Just realized I haven't had any in a few days.

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  • shaz101
    shaz101 Member Posts: 718
    edited January 2016

    thanks again avmom. I have a LE drainage every week at the local country hospital and once a month at a specialist lymphatic clinic 2 hours drive away. No one has given me any exercises to do! I'm going to see my gp today to ask him to prescribe ketoprofen which is currently being trialed in the US.

    I'm on my way for my breast ultrasound. A bit nervous, but not too bad.

    Katy I'm sorry to hear about your power, but very happy to hear that you can read! Must be such a relief.

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

    Sharon, Keep us posted on how the ultrasound goes. Thinking of you!

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

    Thank you Sharon! It is amazing how much difference seeing clearly and with color again makes!

    In your pocket for your US. Please let us know you how go.

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

    Sharon, best of luck with ultrasound. I am really interested in your opinion of it because it has been on my list to investigate since you posted about it.

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  • shaz101
    shaz101 Member Posts: 718
    edited January 2016

    all done. It took 30 mins tops. You lie down and an operator lathers you in creme and positions the square scanner onto your breast. Moves it 3 times per side to cover breast into underarm. Except for the side with partial. She did 4 moves on this side. She said it was to cover the void where my surgery was. In my head I'm thinking... fuck has she seen something! So I asked her, if it all looked ok. She said from her 'untrained' eye it appeared fine, just a few cysts. 😊 but then she said. 'Don't be alarmed if you get a call back' sometimes they want to look around scar tissue with a handheld. 😕 The report takes a few days to come through, as there are only 5 people trained here to review them. I'm really happy with it Theresa as my breasts are dense. She said I should have 1 every year along with my mammogram. As it will pick up any changes very early.

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

    Sharon- thanks for the good report. Here's to a formal all clear in a couple of days but it all sounds good! Glad they cared for you sonicely and it wasn't too traumatic. 💞

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  • shaz101
    shaz101 Member Posts: 718
    edited January 2016

    you're welcome. She said not many people are having them yet and they haven't really advertised as they were doing renovations. It's not fully covered my our health system. It cost $245 au and my share is $125. Well worth it for my piece of mind.

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

    Thank you Sharon! I plan on paying out of pocket for mine since I'm sure my insurance doesn't cover it. Which is so dumb, since ultrasound verified the lump I found as being bad, but I guess they would rather pay for more expensive testing that I don't think is as good. Oh well

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

    I'm glad, Sharon.

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  • avmom
    avmom Member Posts: 324
    edited January 2016

    Sharon, I'm glad everything looks ok. I would ask about exercises and any recommendations that might help. Originally, my therapist said to concentrate on stretching, and to do very minimal strength exercises - 10 reps at about 1 kilo resistance for lats, triceps, biceps, rhomboids and traps. Since then, she has encouraged me to increase my strength training, taking care to avoid too much muscle fatigue and watching for lymphatic response. I'm doing strength training 3 times a week now, and although I'm not "strong" yet, my capacity is much improved. It is astonishing how much strength I lost during chemo. There is an information document for trainers on the lymphedema website "stand up speak out" that my therapist and my trainer have both reviewed. I do all of my strength training now on either my home "Total Gym", or on the commercial version of the total gym at my trainer's studio. It uses your body weight, or a small fraction thereof, for resistance. I have also been working hard on getting my weight down to a BMI under 23, as there seems to be some research that recurrence rates are much lower if you are below 23, particularly for triple negative bc. I still have quite a long way to go, but have lost over 6 kilos since the end of November. I had put on over 15 kilos in years before my diagnosis, so it will take some time, but I'm moving in the right direction. I can hardly wait to get back in to my "small" clothes.

    I started taking amitriptaline for the neuropathy in my feet about a week ago, but haven't noticed any improvement. Maybe it takes a while.

    Gentle hugs to all.
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  • ksusan
    ksusan Member Posts: 4,505
    edited January 2016

    Good for you, avmom!

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  • shaz101
    shaz101 Member Posts: 718
    edited January 2016

    my mum doesn't sleep at night. I remember some of you had trouble sleeping. What works for you?

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

    Sharon- ugh poor thing. Here are a few suggestions. Her mileage may vary:

    some people try Melatonin ? Maybe 1-3 mg to start. Make sure she's ready to go to bed and turn off the lights as it supposedly works very quickly.

    Magnesium helps for some, and I sometimes take a magnesium salts (Epsom) bath before bed which helps. I usually add several drops of tincture of lavender to the bath.

    Some herbal teas, depending if she's anxious or just sleepless. Chamomile, valerian, kava

    A lavender sleep mask, most helpful if it is black, absolutely black so no light at all gets in. A small amount of rice or barley inside makes them a bit heavy which helps keeps your eyes closed. If she can't tolerate a mask, tincture can be applied all around the skull on the hairline. I have found this very helpful in the past.

    Short term use of a medication in the benzodiazepines family, Ativan, clonazepam, Xanax, etc. These are actually anti-anxiety, not sleep meds per se, but sometimes the underlying problem is anxiety. These are not without issues, as they can easily cause dependence

    An actual sleep med, like ambien, but again, weird SEs for some and you can't/shouldn't use them for long stretches.

    Practice sleep hygiene: Google this, but essentially no screens of any kind at least an hour before bed, only activity in bed should be sleep or sex, not watching tv. There's a lot written about this, so I won't repeat here.

    Mild to moderate exercise during the day, but not right before bed.

    It is important to try to address the underlying issue. Sometimes it's anxiety, or a genuine sleep disorder, but it is often a SE of menopause. Whether that is because of lack of estrogen, or hot flashes interrupting sleep, depends on the woman.

    Sorry for such a long post. Lots of causes, lots of potential solutions. There sure are a lot of us struggling with it though.

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

    Sounds pretty comprehensive, Katy. For me, I can't have any new scents though. They keep me awake. Silly, I know.

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

    Everybody is different. If I leaned anything during chemo, it was that.

    Hoping if you throw enough s$&t at the wall, something will stick!

    Off to the Lifecare facility for a Furry Friends visit. The sun is peeking out! Yay!


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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited January 2016

    Magnesium should help with that...😆

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

    The Natural Calm magnesium citrate powder is working well for me (I've only tried it for two nights, but they've been two good nights!). I've linked to the unflavored, which is somewhat tart, but there are several flavors as well.

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  • pboi
    pboi Member Posts: 663
    edited January 2016

    Ksusan...what are you using it for? Sleep? Constipation? Both? How has it helped you? Have you found it works better than magnesium pills?

    I'm on calcium and vit D and thinking to add magnesium to help absorption possibly. If there are sleep benefits than bonus! I don't have constipation issue actually the opposite problem sometimes, so worried about the effects of magnesium on that.

    PB

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

    I'm using it for increased leg muscle cramps. Sleep and regularity are bonus effects. I was taking up to twice the dosage of mag citrate pills with no effect on cramps, sleep, or bowels. The Calm seems to work better for all three.

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  • shaz101
    shaz101 Member Posts: 718
    edited January 2016

    I haven't read any replies yet...

    Someone pull me down from the ceiling. I got a call back from yesterday. They want to have a look at a couple of areas with the hand held ultrasound. On my way there now. It's a 1 1/2 hour drive 😢 great it was my first day back at work too. Fuck this crap.

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

    Sharon- oh no! Waiting to hear from you..... We are holding your hands.


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