Starting Chemo March 2015

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

    Diane- I am so sorry about everything. My heart broke for you that you had to hear that innocent comment from your daughter. Constant pain, which you've had for way too long, makes a person nuts. It is very hard to isolate the variables. I am sending you lots of positive thoughts and feelings, and a gentle hug. Hoping so hard they figure it out soon. I know all of it is a burden of one kind or another right now. Hang on. We are here. 💞

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited October 2015

    Diane, I feel bad for you being in constant discomfort and pain. It can drive a person up the wall. I hope your new treatment plan brings you relief.

    I did read on Tamoxifen board that quite a log of women have different SEs depending on the manufacturer. Like Theresa said, it might me worth giving it another try if you can find a different manufacturer?

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  • DavisD
    DavisD Member Posts: 338
    edited October 2015

    neverthought-heating pad is my best friend too:) For the lashes, I have a friend who used the rx Latisse (not sure how it's spelled) but she said her lashes grew so much she almost had to trim them! I would love to get a rx and try it but the bottle is about 150.00 I think...maybe a treat later on. Our health insurance plan is going up 13.8% and one of the reasons listed was claims for high cost, catastrophic claims. My face burned reading that I'm part of the reason we all pay more! thanks for being so kind even though you're going through a lot too.

    theresa-I've taken notes from your thoughtful response and I'll address them all. I'm going to find my last labs, I do remember they still weren't normal levels but not sure which ones were low. You are awesome!

    lovemylab-so glad your bladder pain has been addressed. we know our bodies better than anyone.

    katy-as always, thank you! sometimes I think I just can't stand this pain any more but people like you inspire me to keep fighting:)
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  • Trvler
    Trvler Member Posts: 3,159
    edited October 2015

    Diane, I am sorry you are having such a hard time. I agree with Theresa. I think all of what you describe could be opiate withdrawal. Don't stop Tamoxifen for good until you have completely gone off the opiates.

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  • pboi
    pboi Member Posts: 663
    edited October 2015

    Diane...I'm so sorry to hear about your constant pain. I hope a new rx is prescribed soon and will give you some relief. My heart goes out to you...hang in there!

    My twins are 10 and I have a 7 year old. I am so blessed to have a lot of support and help here at home at the time of my surgery. My mom and sister will stay with us a few days to help and my hubby has a few days off work.

    So much of this cancer stuff sucks...but I'm reminded now how many blessings I have in my family and friends, and of course all of you wonderful ladies.

    Oh and goodbye Pinktober! Proud of Katy's activism this month, but glad to see this month end.

    PB

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  • DavisD
    DavisD Member Posts: 338
    edited October 2015

    Theresa-checked my labs from the 14th of this month and the sodium, potassium and chloride are all within normal range. RBC still low, MCV little high, MCH little high and MPV low. I think it's all heading in the right direction. As far as the Tamoxifen, I have hardly had any hot flashes since stopping. My tumor was only 25% hormone receptor positive. I am going to talk it over with the MO and I will try it again when I get past this period. I just can't believe such a small dose of butrans could wreck such havoc but I've been on that patch for over 2 years. It started with spinal surgery and then the sjogren's diagnosis. Every doctor I would see would say "this probably isn't a good time to go off the patch" but when IS a good time? If things don't improve I may agree but I'm going to give it a shot:) I going to try the soak tonight. I am taking a Magnesium supplement.

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  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    And hey Diane, honestly, if I was in pain, I would try the medical marijuana. I already told my husband if I ever go stage four I will be a pothead rather than take a bunch of pharmaceuticals. My husband got a Vap unit, marijuana card, the whole deal, and he had me try it twice during chemo - never really tried it before lol. First time he said do four tokes/vaps whatever it is called and I couldn't sit straight in a chair I got so stoned, and he got in big trouble! I was literally screaming at him lol. The second time, I literally took two sucks off the Vap unit, and it did the trick. But seriously, after one toke i was in lala land. I didn't need it during chemo, but was nice to know if I did, I could use it. I'm a weirdo, even though it probably would have helped me if I used it, I don't like not feeling like my mind isn't my own unaltered mess. But in California, it is "legal", not sure if it is where you are

    Calgon (marijuana), take me away! Whatever works.

    Opiates are so heinous I really think a lot of what is going on for you is withdrawal. My daughter had to take an opiate after a knee surgery, and she tried stopping and called me crying saying she had body aches, felt like she had the flu, and I freaked out. Hubby said tell her cut a pill in half and take it. Almost immediately, her flu symptoms went away.

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  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    Diane, do you take b-12?

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  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    also, my MPV is a little low, and my MCH is a little high too. So maybe those are chemo related? My MCH has been dropping to normal the further I get away from chemo, but still outside the normal range on the high end. My MCV was high, but it has dropped back into the normal range as of September 11. RBC is in the range, but on the low end. RBC got low during chemo, but also as of September 11 returned to my normal number post chemo.


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    As a reference point my labs were not normal until 6 months PFC. I still have borderline high glucose, but A1C in the normal-ish range, and low-ish RBC and WBC, but I tend to run low. I used to only able to donate blood about half the times I tried due to low hemoglobin

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited November 2015

    PB, I've been on Arimidex for a week as of this evening, and I had Lupron 2 weeks ago. My rads ended on 10/7, and I was getting some great energy back by rad #15, so I'm pretty sure that my fatigue is a mix of Arimidex, weather, and recon pain. Overall, I'm still doing ok. I go in for Herceptin on Tuesday, so I'll see what the MO has to say.

    AV, it's scary to think that so many scans a tests missed a blob of cancer in your "good" side. I'm just glad that it's out now, and I hope you don't have to have any more miserable treatments as a result.

    T, you look like you're straight out of Litchfield! When you think about it, this past year has been a bit like prison in many ways - crappy tasting food, low visitation turnout, and getting constantly assaulted by insurance! It's nice to feel some freedom again

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  • SueH58
    SueH58 Member Posts: 632
    edited November 2015

    Theresa, what do you consider a low dose of magnesium. Going to start an AI soon, and want to be prepared. 

    special--do you know how long past rads I have to start my AI?  My RO said start a week after rads (11/10), but I sure would like to wait til after a Thanksgiving. Think that's risky???

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  • Italychick
    Italychick Member Posts: 2,343
    edited November 2015

    SueH58 maybe 200? If you still have problems, try adding the baths or bump the pills up a bit more. I'm backing down from 1 gram to about 500 mg right now because I don't think I need as much anymore now that chemo is over.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2015

    sue58 - how are you feeling after rads? What kind of SE - particularly fatigue? Do you know how strongly ER+ you were?This is actually your MO's call - they are the ones in charge of systemic treatment, and that includes hormonal therapy. Most MOs like to give a bit of space between treatments to properly attribute any SE. Ask your MO, but it is doubtful that 2-3 weeks will be a problem. I did not have rads but definitely had a month between last chemo and starting Femara.

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  • shaz101
    shaz101 Member Posts: 718
    edited November 2015

    you guys have bee busy while I've been away camping. As for the mri they don't cover them here either. Im hoping to ask the breast surgeon to refer me anyway. I rang the radiology place and they said it'll be about $280 for the breasts.

    I'm on page 299. Ill catch up soon xxx


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  • DavisD
    DavisD Member Posts: 338
    edited November 2015

    Theresa-I do take B12. I tried a little once during chemo and that's not your mamma Mexican weed from the 70's! My heart was racing and I felt horrible. I would like to try medical grade since I could know exactly what kind and strength I'm getting. Unfortunately Virginia doesn't have it legal. Maybe a road trip to CO:) I think some of the symptoms can be attributed to the opiods but not the nerve pain..that's what prompted me to go off them and try the naltrexone. I couldn't see continuing to take anything if it wasn't helping. Maybe it helped a little more that I thought and that's why I'm so miserable? I slept pretty well but vivid dreams for sure. The nerve pain is better when lying down at night, mornings are tolerable and then it gets worse throughout the day. At 3pm today it will be 24 hrs no patch no break through meds.

    Sharon-hope you had a great camping trip!

    Hope everyone has a wonderful Sunday!

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  • Italychick
    Italychick Member Posts: 2,343
    edited November 2015

    Diane, I'm with you on the pot lol - what do they put in it now? Glad you got to sleep!

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

    I make a tincture from some organic stuff I get from a friend. Two ingredients only. The mj and grain alcohol. It is legal in Oregon, but I have been warned to watch when you buy it for extra "ingredients" just like cosmetics, ugh..

    Anyway, my point is, Diane, you can use it topically for pain with no psychoactive effects. You can make a balm with, yes you guessed it, coconut oil. You can also take it by mouth with some juice or hot chocolate or something. For internal/brain/psych effects for pain. Be aware that it takes 5 minutes to take effect when you smoke or vape, over an hour when you take by mouth. So often less SEs. In my own personal experience, the effects also last much longer when taken orally. For you, D, topical might be something to try. It is messy, though, and can stain.

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2019

    I think I remember reading that testing for purity will go into effect soon.

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

    that's good news.


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  • SueH58
    SueH58 Member Posts: 632
    edited November 2015

    Diane, did you try gabapentin for nerve pain?

    Special - Still feeling OK with 3 more rads to go. I'm tired earlier at night, and have some skin issues, but nothing terrible. I was highly ER receptor positive (he said I didn't get a percent? Wierd!!!). I sure would like to wait 3 weeks til after Thanksgiving so I can have a great Thanksgiving and not spending it outside like poor Diane! I'll check with my MO.

    Hope you all are having an enjoyable Sunday afternoon. Getting psyched for tonight's Packer game!

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  • DavisD
    DavisD Member Posts: 338
    edited November 2015

    Katy-thanks I hadn't thought of other types of administration. When you have time could you email me directions/ratios? I trust what I have ...had it since April! I loved the pics of you with family. You looked so radiant:)

    Yes Sue. I was up to 1200mg daily (300 four times a day) and no relief. Still on it but started reducing the doses.. Just like the opiods, if they aren't helping no point in taking. For the pudendal nerve pain I gave Lyrica a try. Pretty hefty dose and no help. As for the Tamoxifen, if I had such a high percentage as you I'd be much more commited to making it work. Hope you get to stay inside for Thanksgiving:)

    I'm seriously considering looking into hypnosis. If the brain controls our perception of pain maybe I could be hypnotized into not feeling the pain. Anyone have any experience with it? I think I'm over the hump..over24 hrs without the oral opiods and three days without the patch!

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  • Italychick
    Italychick Member Posts: 2,343
    edited November 2015

    Diane, hopefully you can get to a therapeutic dose of the naltrexone, don't give up on it!

    As for topical oil, we mix it with DMSO which drives it into tissue pretty fast. But I haven't tried it on me yet, only on my dog.


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  • Carrie37
    Carrie37 Member Posts: 331
    edited November 2015

    Avmom, I'm so glad the bracelet arrived! Sorry to here for your path findings but do try to see the silver lining. Amber, I'm sorry you are having a hard time. I hate this roller coaster ride. I was a bit of a wreak this week. Can't remember if I posted that I hate to have 50% of my fills removed. Lame. Literally deflated. I was crying so much on Friday that I blamed it on the Tamoxifen and swore I wouldn't take it anymore. My mom talked me off the ledge. I think the added stress of working again is taking an emotional toll. Anyway. I noticed this red dot on my incision today. Probably a little bigger than the size of a pencil eraser. But definetly not there before. Of course I have no sensation so I don't know if it hurts. Weird. I am trying again this week for the planning rads session where they make the mold.

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  • Italychick
    Italychick Member Posts: 2,343
    edited November 2015

    Carrie37, does it look like a blood blister? I had two of those pop up in my surgical area, but not sure if they are surgery related or chemo related. Doctor wasn't concerned

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  • Carrie37
    Carrie37 Member Posts: 331
    edited November 2015

    T-it doesn't look like a blood blister. Just a pink dot. I see the RO this week and my MO too. So maybe I'll just ask them. Fun week ahead!

    Diane, I'm so sorry you are having such a tough time. Sending positive vibes your way everyday. I think of everyone here often!

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  • shaz101
    shaz101 Member Posts: 718
    edited November 2015

    Dianexcellent I'm so sorry to read about your constant pain. I wish there was some magic treatment. It's just not fair. Hugs to you. I had a lovely time thanks.

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  • shaz101
    shaz101 Member Posts: 718
    edited November 2015

    HHas anyone had an automated breast ultrasound?

    ABUS

    I spoke to my breast surgeon today about a bmx and a mri. He said there is new technology for scanning dense breasts. So he has referred me for one. I will have it in January before my next appointment with the BS.

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  • Italychick
    Italychick Member Posts: 2,343
    edited November 2015

    I am so looking into this. There is a facility about 50 miles from where I live. Ultrasound diagnosed my tumor right off the bat

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

    Had a bit of a meltdown today at rads. They had maybe 3 extra people just standing there watching me. I guess they were training them. But I started thinking that THEY were thinking 'I wouldn't want to be her' and I don't know why I started crying. It was my doctor day and she was really nice. I can tell itching is probably going to make me nuts. She is trying to help me find solutions.

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