All Aboard the "T" train! Starting Tamoxifen After Spring Rads

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  • tbalding
    tbalding Member Posts: 449
    edited August 2016

    I'm 5 weeks post rads & 4 weeks taking tamox. Still have fatigue, but so far this week it's better than last week. Cautiously optimistic that it's getting better. So far no other noticeable se.

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  • PlanB58
    PlanB58 Member Posts: 157
    edited August 2016

    Just finished first month. Still have fatigue but if this is the worst of it I'm good! Here's hoping things keep going fairly smoothly for all of us

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2016

    No one else is having horrible insomnia? I tried restoril and now I'm on ambien. Up and down all night. I made a wrong turn and got lost trying to get home from work yesterday because my mind wandered from being so exhausted. I don't know if it's because of the hysterectomy with ovaries out, or the tamoxifen. Maybe a little of both?

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  • Lisey
    Lisey Member Posts: 1,053
    edited August 2016

    5 weeks in, still no symptoms.. it feels like a sugar pill.... (concerned)...

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  • EmilyJane7505
    EmilyJane7505 Member Posts: 25
    edited August 2016

    Has anyone else been approached to join the Palbociclib phase 3 study? It would be taken with Tamoxifen. I am considering it, but the side effects of Palbociclib are not minor - low white blood cell count.

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited August 2016

    Hi EmilyJane~ Yes, I was told that I am a good candidate. I don't want to be a participant because of the appointments and follow ups needed. I don't live near my health care at all.

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited August 2016

    Lisey~ I passed on your thoughts to my doc. She says, absolutely, not to be concerned! Our bodies respond to this drug, just like everything else, differently.

    Again, she is from one of the "top 4" cancer hospitals in the US. I know that does not make her god, but she is surrounded by the best research practices in the world, especially about Tamoxifen.

    My side effects: Slightly elevated hot flashes, joint pain - knees and ankles.

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  • Lisey
    Lisey Member Posts: 1,053
    edited August 2016

    Thanks Garden... in a way I'm grateful for no SEs.. but still.. I'd like a reassurance it is working. Oh well... gotta leave it to God I guess.

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  • EmilyJane7505
    EmilyJane7505 Member Posts: 25
    edited August 2016

    Thanks GardenGypsy -travel would be somewhat of a hardship for me - 1 hr drive each way. I'm considering it, although it reads like a mild chemo - lowered blood cell counts, mouth soreness, hair thinning, nausea... Although, I can decide to quit at any time. My info said low blood counts are the biggest issue and they typically just cut your dosage. We'll see, I'm giving it a couple of weeks to decide. If there is some benefit, I'd like to think I took advantage of all opportunities available to me.

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  • Sheri64
    Sheri64 Member Posts: 113
    edited August 2016

    My joints are hurting so bad. Been on this T train since 6/25. I am thinking for starting turmeric to help but I already take a baby aspirin a day and I know the turmeric is also a blood thinner so I want to check with the doctor just not sure which one to call. The MO, my heart doctor or my personal doctor who put me on the aspirin. If I could walk all day I would be fine, it is the sitting at work and then trying to move after a couple of hours. I am walking on my breaks.

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited August 2016

    Sheri~ Yes, after lying down, being still or sitting down it's so hard to get back up.

    I am trying Tumeric for one month. We'll see..

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2016

    I've been taking turmeric since I started and have no joint pain. I don't know if it is the reason or not. Started it to decrease hot flashes

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  • PlanB58
    PlanB58 Member Posts: 157
    edited August 2016

    LG how much and what kind do you take? I am considering trying this as well.

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2016

    Plan b, I'm taking sundown naturals. Started out with 500 mg and went up to 1000 right now. I was also taking icool, but stopped that because of the expense and haven't seen a difference with not taking it, although I may get some biotin for my hair that's falling out lol!

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited August 2016

    I'm taking Gaia brand Tumeric Supreme. Whatever you use, be sure your brand has black pepper in it - for absorption purposes.

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  • PlanB58
    PlanB58 Member Posts: 157
    edited August 2016

    Thanks LG and gardengypsey! Once a day?

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2016

    I take mine at night. Don't know if it makes a difference. Seems to work ok for me. I do want to look into a different kind. I did hear the Gaia brand was the best, just more expensive, depends on what you want to pay

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited August 2016

    Take mine at night, too, not sure it matters.

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  • Sheri64
    Sheri64 Member Posts: 113
    edited September 2016

    Anyone else still really tried after being done with rads for weeks. I finished on 6/9 and am still just as tried. I am so tried by the weekend I sleep till 10:30 or 11:00 and I can't still awake past 10:00 most nights.

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited September 2016

    I finished rads on 5-14 with total hysterectomy on 6-9. Started tamoxifen and been on almost 2 months. I work 40 hours a week and barely make it through the day. I come home and often in bed between 6:30 and 8:30 and have to take sleeping pill now. I'm tired ALL the time, but force myself to walk at least 2 miles three times a week and it renews my energy usually. It's hard though. At least I don't have as much nausea now after a few weeks after starting the tamoxifen

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  • tbalding
    tbalding Member Posts: 449
    edited September 2016

    Finished rads on July 12. I had extreme fatigue for about 7-8 weeks. Then started getting some of my energy back. But it still catches up with me. This last weekend, I had zero energy, but by Monday started feeling better, more energy. I've forced myself to keep up with excercise throughout everything. The positive energy I get from it helps even if I'm so tired when I get done.

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  • Wholenewworld
    Wholenewworld Member Posts: 29
    edited December 2016

    I have been on Tamoxifen (Activis) for 5 months. At roughly 3 months I has stiffness in my fingers upon waking up, which went away after a few minutes. Then recently, a little more in forearm and wrist. As of yersterday, aI have muscle/bone pain in my back upper thigh thatgot progressively worse throughout the day. Some swelling in area but no redness or warmth. Sometimes feel it throughout the side of hip and leg. Woke up and it's still there. Worse whenever I stand or walk. Now i will have to see if it's the Tamoxifen and rule out a blood clot. Anyone have similar muscle/bone/joint pain?

    After developing Lymphedema post rads, I thought that was the worst! BC SE's just keep coming. Ugh!

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited December 2016

    I am having trouble distinguishing the side effects of Tamoxifen with the neuropathy.

    I know that some of the pain is neuropathy because the Gabapentin is working to a certain extent.

    Is it true that the Gabapentin would not be working for Tamoxifen's SEs?

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited December 2016

    Lovinggrouches-

    Are those SEs any better

    I have been on Tamox for about 6 months. Usually by 1-3 PM, I am a mess. I believe it to be a side effect of the Tamox and the cumulative effects of the chemo, radiation and surgery.

    Hang in there with me!.

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited December 2016

    Lovinggrouches-

    Are those SEs any better?

    I have been on Tamox for about 6 months. I have a very demanding job.Usually by 1-3 PM, I am a mess. I believe it to be a side effect of the Tamox and the cumulative effects of the chemo, radiation and surgery.

    Hang in there with me!

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited December 2016

    I can't tell what side effects I'm having from the hysterectomy or the tamoxifen usage. The effexor has helped the night sweats a lot, but now I sometimes get a trigger finger and have way worse hip pain and walk like an old woman if I sit for too long. I still get nauseated right before a hot flash hits me. None of it is enough for me not to take that pill every day though. I will stick with it!! Almost six months in!!

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited December 2016

    Getting up from a seated or lying down position is brutal for me, as well. I am on the same time frame as you, Lovinggrouches. Let's do this.

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited December 2016

    Well make it gardengypsy!!!! I'm like you, can't handle the long work days like I used to, but I manage to make it somehow. Hate feeling like I'm 70!!!! Thank God I don't LOOK 70 yet lol!!!!! I DO believe I've aged five years in my pictures this past year and look older than my 42 years lol!!

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited December 2016


    Besides the aches, I am wondering if my cognitive symptoms are related to the Tamoxifen.

    For most of each day, I feel really unwell. I am easily overwhelmed by sensory stimuli, and need a lot of quiet. Throughout my work day, I feel like my head is going to explode.

    I think these symptoms are a result of "chemo brain", but possibly not. I've read that estrogen is important for brain functioning.

    Is there anyone out there who believes that their thinking, judgement and memory problems are not "just" from the chemo?






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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited December 2016

    I didn't have chemo, gardengypsy, but I did have a total hysterectomy, so I don't know if the cognitive issues I'm having are from the low estrogen because of ovaries out or combination of both. It doesn't take much to fry my brain at work anymore and my eyesight has gone to pot and I have had to use over the counter reading glasses the last few months. Cancer is the gift that keeps giving!!!

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