Spring 2018 Starting Hormone Blockers

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  • Paco
    Paco Member Posts: 208
    edited April 2018

    I had my last radiation treatment this morning - yay! The resident gave me the okay and asked me to schedule a follow up in 4 weeks (not sure I will, that seems really soon and unless I have issues, why?). She did tell me to begin taking the Tamoxifen any time now.

    For those who take Tamoxifen, does morning or evening work best for you?

  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    Paco - yeah!!! My follow-up with RO is two and a half weeks after end of radiation. I just took it as her being required to follow up. I took rads very well, too, although it's weird how the sunburn has got worse even 5 days out. The boost area is very easy to trace. The whole-breast underarm and soccer field/chest are getting darker - more brown than tan.

    Not taking Tamoxifen, but I'm doing the Anastrozole at bedtime. So far so good....

  • Katchan
    Katchan Member Posts: 6
    edited April 2018

    Streetglide201

    So you had your first mammogram six months following removal. I was told the standard was to wait a year and that really bothers me. Not sure if it's an insurance issue or not. I do believe if the ADH shows up again I would make the same choice as you. Just still undecided on what to do. Thank you so much for sharing. If you don't mind could you keep me updated. Wishing you all the best.

  • metoo2018
    metoo2018 Member Posts: 64
    edited April 2018

    Interesting to see what everyone's follow-up schedule is. I see my BS at the end of May and my MO in June. Hadn't even really thought about follow-up with my RO once treatment is done . I haven't been a fan since he rarely has much to say and unless I have questions or skin problems seems like a waste. We'll see when all is said and done.

    I started my Letrozole about 6 weeks ago now - not sure why I didn't wait until after Rads - just didn't think about it. Other than hot flashes- which do seem to be increasing some I haven't had any real noticeable side effects. And they not as bad as night sweats -never had those during menopause either. But rarely do I sleep a night with covers on for long and I have to have a fan blowing on me. Manageable still for sure. My weight has been fluctuating up and then down again by a pound or two each week but haven't really been working at it - something I definitely will do as the weather improves and I can get out in the garden. I really can't afford any weight gain and know healthy eating and exercise is important to improve my health going forward.

    I do wonder about the ongoing watch for recurrence. I know I will have screening 2x per year for the next couple of years but wonder about how they monitor outside of the breast area. So I will likely keep watching the boards here and getting advice and figuring out what to ask. I hope at some point I don't have 4 doctors!

    Have a good rest of the week!

  • Streetglide2014
    Streetglide2014 Member Posts: 4
    edited April 2018

    Katchan,

    I had an MRI 6 months after my first lumpectomy. That came back showing a small mass. They did an ultrasound to see if they could find it and then going to do a biopsy. The ultrasound did not show anything. So I had to have an MRI driven biopsy. Which concerned me that they didnt see the mass 6 months prior or on the ultasound but did with the MRI. I went yesterday for my 6 month mammogram follow up and my scans looked good. YAY!!! In 6 months I will have another MRI.

  • Paco
    Paco Member Posts: 208
    edited April 2018

    Today was day 4 of Tamoxifen for me. So far, the only problem is remembering to take it and then remembering that I did. When I took the Pill, it came in those blister packs with the day of the week. Tamox needs that kind of packaging!

    I put a reminder on my phone. Hope that's enough.

  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    I'm 8 days in to Anastrazole and not much of any SE yet. Definitely noticed one or two mild hot flashes at random times during the day, which is new for me. But they are short and mild. Sleep is fine. I'm keeping a a fan aimed at me . I'm walking often, 100 core strength somethings, stretching (lumpectomy rads side is very stiff). Trying to keep up with the protein. Resting. So far so good!!!

  • metoo2018
    metoo2018 Member Posts: 64
    edited April 2018

    Hi ladies- hope everyone is enjoying a good weekend. One of the potential SE is dizziness - I take my AI (Femera) at night for this reason. Out in the garden this afternoon I did notice what I will call - balance issues? Not really feeling dizzy but a few times felt tipsy - like it would be easy to topple over. So I guess I'll need to watch that - told my husband (who knows what a klutz I am anyway) to come check on my once in a while just in case!

    Other than that, just hot flashes. I love my ceiling fan over the bed. I got a small travel fan for when we take our trip in a few weeks. I can't imagine trying to sleep without air blowing on my now.

    Hope it is a good week for everyone.

  • Billb464
    Billb464 Member Posts: 62
    edited April 2018

    lol, I am having the same problem with remembering if I took my tamoxofin! Mine are not in a daily blister pack, I have had to count them twice just to make sure, (I did take it). I haven’t had a lot of SE (um, maybe that is my SE, the memory is goingand I am almost done with the first month. I am drinking a lot of water, and trying to keep exercising each day. So far so good 😊.

    I have looked into the Pallas study, it would add another medication for 2 years along with the tamoxifen. I go back in June to get started. You have a 50/50 shot at getting the medicine. I’m sure it will add to the SE, but figure it is with a try as long as I can stand it.

    I do wonder about changing over to the AI’s eventually.

  • Nyr4evr
    Nyr4evr Member Posts: 37
    edited April 2018

    You don’t need me to tell you this. Try taking it at night to help you sleep. Maybe

  • Meg101
    Meg101 Member Posts: 175
    edited May 2018

    Hi Everybody! I saw my MO last week (3 months after chemo). She examined my other breast. She said it is "lumpy". My breasts have always been lumpy so I'm not concerned and neither was she. Prior to diagnosis my only symptom of BC was an indentation of the areola area.

    I still feel fine on Anastrazole. I haven't had night sweats or hot flashes since surgery. The nights sweats were severe before my diagnosis. Someone told me night sweats can be a sign of cancer. I guess they were right.

    Paco - Congratulations for making it through rads without much damage to your skin. You did it !!!!

    Is anyone else worried about recurrence? Reading some of the stories on the Stage IV threads has me a bit concerned. There are also some inspirational stories on those threads which are good for the soul. I continue to be amazed at the strength and wisdom of those who walked this BC path prior to us. This is truly a character building experience.

    I'm so thankful for all of you. I cannot imagine walking this path without your support here at BCO. I often lurk without posting, but try to get online at least once a day to see how everybody is doing. For those of you moving on with your lives, best of luck and good health. I will miss you.

  • Meg101
    Meg101 Member Posts: 175
    edited April 2018

    Hi Everybody! I saw my MO last week (3 months after chemo). She examined my other breast. She said it is "lumpy". My breasts have always been lumpy so I'm not concerned and neither was she. Prior to diagnosis my only symptom of BC was an indentation of the areola area.

    I still feel fine on Anastrazole. I haven't had night sweats or hot flashes since surgery. The nights sweats were severe before my diagnosis. Someone told me night sweats can be a sign of cancer. I guess they were right.

    Paco - Congratulations for making it through rads without much damage to your skin. You did it !!!!

    Is anyone else worried about recurrence? Reading some of the stories on the Stage IV threads has me a bit concerned. There are also some inspirational stories on those threads which are good for the soul. I continue to be amazed at the strength and wisdom of those who walked this BC path prior to us. This is truly a character building experience.

    I'm so thankful for all of you. I cannot imagine walking this path without your support here at BCO. I often lurk without posting, but try to get online at least once a day to see how everybody is doing. For those of you moving on with your lives, best of luck and good health. I will miss you.

  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    I'm taking the anastrozole at night, too - just in case of the dizziness.

    Meg - my left breast is still changing, from two lumpectomies and 21 rads. It looks pretty much the same as it did but the swelling is slowly abating and I think it will be smaller. It is definitely lumpy, though. I'm waiting for things to settle down so I can get accustomed to the new normal - it was always a dense breast (not in the stupid way), but now the hard places have been relocated. Hm. On the up side, the left breast was always bigger than the right anyway, so maybe they'll be even. Re the fear of recurrence: I can also feel anxious when I read some of the other threads - I think that regardless of our diagnosis, staging, etc., the word CANCER will always trouble me. But it's in my vocabulary now, so I try to concentrate on what I can control - diet, exercise, happiness, joy.... I acknowledge I will always have the risk of recurrence - I'll just need to be vigilant. That's how I deal with it. Anyone else?

  • Meg101
    Meg101 Member Posts: 175
    edited April 2018

    kaywrite - I agree, the only way to prevent a recurrence is to just do the best we can to live healthy through diet, meds, exercise, and a positive mental attitude. The chance of recurrence is out of our hands until a cure for cancer is found.... and until that cure is allowed to be aggressively marketed to the public. Cancer is a lucrative industry. The suspicious side of me worries that the health industry will milk cancer for all it's worth. I've read there is an enzyme which has been discovered that prevents cancer from spreading. It blocks proteins in cancer cells, and boosts the immune system to strengthen non cancer cells. I'll post the study later if I can find it.

  • metoo2018
    metoo2018 Member Posts: 64
    edited April 2018

    I hear there are all kinds of new advances that are just on the horizon. My surgeon firmly believes that one day breast cancer will be cured in a non-surgical way with the amazing advancements in pharmaceutical treatments. Let's face it, they'll get their money either way - the new drugs will just cost as much as a surgery in the long run.

    I figure I won't borrow trouble by worrying too much about what I can't control -though I'm sure I will each time I go for imaging until I get the "all clear". Other than that just hoping to put it out of my mind and live my life as best I can. I guess we'll see how well I do with that once this is behind me.

    I just heard that a woman I work with - younger than me (probably mid-30's) was just diagnosed. Breaks my heart because her road will be so much longer and more challenging than mine. She starts chemo before surgery, then mastectomy and reconstruction. I always felt my situation was pretty manageable and never got too down about it but I really feel for her. She is a single Mom with a young son. Hoping to offer her the best support I can. Everyone's experience is different and certainly mine will never compare to hers but I can certainly listen, offer support and see what I can do to lighten her load.

    I sure hope they cure this darn disease some day!

  • flowergal
    flowergal Member Posts: 167
    edited May 2018

    Hello everyone,

    I am on day 12 of anastrazole and no issues so far. A few possible hot flashes maybe- or it could just be the weather is getting warmer. I seem to be gaining a few pounds in spite of walkng 2 miles/day, eating healthier and less wine. I hope I can combat this and it slows down. My main concern in the long run is osteoporosis as I have osteopenia so I am taking my tums, and Vit D faithfully, and including more calcium rich foods.

    I get an anxious feeling every time I see that commercial about the drug for metastatic stage 4 IDC. Mine was stage 1 b and my oncologist said my proverbial" cup was almost full" so this is what I counter the anxiety with.MY Surgeon told me at my first visit, my tumor was wimpy and "something will kill me but this isn't it!"" I view this as a chronic illness to deal with the best I can.No one ones what the future holds, so I enjoy each day more fully than I used to, and seem to get less irritated at minor things .


  • Marigold8
    Marigold8 Member Posts: 46
    edited May 2018

    Question about aromatase inhibitors' side effects:

    Can you develop side effects even after taking them for a while? Or do they mostly show up early in treatment? By early, I mean in the first weeks or months. And do early side effects resolve over time? Like, after six months or a year?

    I've read a lot about anastrozole, which I've been taking for two months, and have yet to find definitive answers to these questions. I'd be interested in hearing about your experiences.

  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    yes side effects can show up later. Sometimes it’s that enough of the drug has built up in your bloodstream to trigger the side effect. A good example would be rash, hives, nausea, vomiting, constipatio, etc. And sometimes the side effect is an indirect side effect-it’s not the drug that causes it but the result of what the drug does that causes it. Good examples of this type of side effect are hot flashes, bone loss, weight gain, brain fog, memory issues, etc. these are all caused by low/no estrogen in the body. Sometimes the side effects resolve over time, sometimes they get worse, and sometimes they stay the same. Everyone’s body is different and will handle the drug and the lack of estrogen differently so there’s no way to tell in advance if you’ll have side effects, which ones you’ll have, how severe and how long they’ll last.

  • Paco
    Paco Member Posts: 208
    edited May 2018

    How long does it take to build up in your system to full efficacy? I have heard 10 days (so basically the half-life of the medication is 10 days)


  • kaywrite
    kaywrite Member Posts: 219
    edited May 2018

    flowergal - I have osteopenia, too, so I'm watching that. And my SO said the same things yours did: something will kill you, but not this... his version of this was something like your chances of getting hit by a bus are about the same as you dying from this breast cancer. He didn't know I've already been hit by a taxi. LOL (that didn't kill me....)

    I'm taking a multivitamin and a calcium/magnesium/D supplement. My MO said it was a perfect combination for my osteopenia concerns. I also switch between steel cut oats (for fiber) and plain greek yogurt (for protein - nearly half a daily allotment - and calcium) for breakfast. The honey I drizzle in the yogurt is good for me, right? :)

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2018

    I 'be been lurking here while waiting for my appointment with my BS who will be handling my follow up care. Met with her today and I will be starting on Tamoxifen as soon as we get the report back from the vaginal ultrasound scheduled for next Tuesday-- unless that report shows something unexpected! Hoping for fewer side effects as going into menopause was relatively ready for me, although having hot flashes won't be fun during a Texas summer--it's in the mid 80s here today with humidity in the 80s too.

    You are all in my thoughts as we continue our travels down this unexpected road. Will post updates as I have new info. Am very glad (I think) to be facing annual ultrasounds rather than pelvic exams--it's been more than 10 years since I've had a pelvic exam and they weren't fun when I had moisture there! Anyone else who is post menopausal have a similar follow up plan?



  • Marigold8
    Marigold8 Member Posts: 46
    edited May 2018

    Thanks, Lula73!

    I'm seeing my MO tomorrow and I'm going to ask him about side effects since I'm having joint pain on anastrozole. I'll report back.

  • Marigold8
    Marigold8 Member Posts: 46
    edited May 2018

    Paco--

    The half-life of anastrozole, from the FDA's Arimidex brochure:

    "...anastrozole has a mean terminal elimination half-life of approximately 50 hours in postmenopausal women."

    https://www.accessdata.fda.gov/drugsatfda_docs/lab...

    For tamoxifen:

    "Following a single oral dose of 20 mg tamoxifen, an average peak plasma concentration of 40 ng/mL (range 35 to 45 ng/mL) occurred approximately 5 hours after dosing. The decline in plasma concentrations of tamoxifen is biphasic with a terminal elimination half-life of about 5 to 7 days."

    https://www.accessdata.fda.gov/drugsatfda_docs/label/1998/17970.pdf

  • Veeder14
    Veeder14 Member Posts: 880
    edited May 2018

    Hi Beaverntx,

    I'm also reading everyone's posts since I'm not starting Tamoxifen for 2 more months. I am picking up the prescriptions though since it's no cost to me. My post menopausal follow up plan includes vaginal ultrasounds/surface ultrasounds 2x/year, plus CA 125 blood test marker for ovarian cancer 2x/year or more if I want, and yearly pelvic exam from the ONC obgyn. Then breast MRI's 1x/yr and mammogram 1x/year, and a bone density test every 2 years, and the Tamoxifen follow up from the MO. Then depending on what the lymph node ultrasound shows next week, I may have follow up ultrasounds ordered from the breast surgeon.

    For that vaginal ultrasound I had to drink a ton of water before the app't. I waited until I got to the clinic and then started drinking. A funny thing happened though. The staff were late and I kept asking when they would take me in as I couldn't wait that much longer. Then finally a technician took me into the room and said, "so when was your delivery date?" What??? She had the wrong patient! I did mention I was surprised that these were done after the baby is born. Never had kids and don't know anything about pregnancy. So back to the waiting area, and finally I got another call and did the test just in time, and then ran to the bathroom.

    So the half life of Tamoxifen is 5-7 days. That's interesting.

  • Teaberry11
    Teaberry11 Member Posts: 79
    edited May 2018

    Hi all!

    I started on Letrozole on March 7th so far so good I haven't really noticed any side effects. I was concerned about my Vit D level since it was very low last summer so I asked my PCP if I could be retested .. well he sent me for a slew of blood work on March 19th. Including checking my estadiol and estrone levels .. both came back lower than the normal range .. they were even flagged as Low — so that made me feel great that the letrozole is doing its thing! My Vit D is better but still only 29 so I'm taking a weekly D2 and daily D3, calcium, magnesium for better absorption. Also taking zinc, ginger tablets, broccoli sprout extract, B12 and Biotin. I just ordered Frankincense essential oil for its anti inflammatory benefit! That's a ton of things to counteract one tiny pill but you gotta do what you gotta do :).

    Ohhh I'm also considering turmeric but the jury is still out on whether is acts like an estrogen when taken in large amounts .. anyone else trying that?

  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    Marigold & Paco- Steady state is reached with tamoxifen after 3 months of therapy taking 20mg once a day for all 90 days. If the half life of tamoxifen is 5-7 days (let's just say 6 days), that means every dose reduces by half every 6 days or another way to look at it is that itreduces by 8.3% each day. When you calculate this out, it means 20mg tamoxifen taken for just 10 days takes an additional 30+ days to be fully out of your system. The longer you're on it the longer it will take to clear. This explains why SEs can sometimes get worse over time and/or suddenly appear months after starting it-the concentration of the drug increases in your system everyday. It also explains why SEs can linger well beyond discontinuing tamoxifen as there is still plenty in your system that's going to take a long time to clear

  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    teaberry- I’m taking turmeric/curcumin to help with hot flashes and inflammation/joint pain. It does help. I had 2 different docs who know my history recommend it. I take the Solgar brand as it’s a softgel, formulated for faster absorption, and significantly higher bioavailability.

  • Veeder14
    Veeder14 Member Posts: 880
    edited May 2018

    Lula73

    Thanks for the specific information about the half life of Tamoxifen. I was thinking that if it has a long half life wouldn't taking it less often (not everyday) still ensure that the drug is working? I haven't started yet but worried at the side effects and especially any stomach pain. Is anyone noticing stomach pain?

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2018

    Veeder,

    Your description of the vaginal ultrasound sounds like my prep but I'm not certain I would have been able to hold it that long! Good idea to not start drinking all that water too soon. I can't wait until I get there though as the lab is only about 15 minutes from my house and I can only drink so much at a time and I don't plan to get there too early for a morning appointment.

    The dust is still settling on my follow up, at least in my mind. First post treatment mammogram has been ordered by my RO and then I'm to see him for one last time, I hope (he is a really nice person but I'm truly not wanting to have to meet him for any more treatment). My bone scans will continue to be ordered by my PCP who I see every six months anyway. Later mammograms, vaginal ultrasounds and physical checks by my BS as well as my annual ophthalmologist visit. The good part of the latter is that he said in all of his years of practice he has not seen a Tamoxifen ocular lesion so tamoxifen has his approval. I'm to see the BS again in 3 months but we haven't discussed a long term schedule yet.

    Glad to learn your mother is doing better. Hope your mouth is healing well-- I had to have a root canal last week and am finally able to bite down with that tooth so I can identify with the dental issues too.

  • flowergal
    flowergal Member Posts: 167
    edited May 2018

    Hi

    I am post meopausal and on anastrazole, and the only follow care I have been told about is a 8 week check to see how I am tolerating the med. The MO said he would be checking "markers" which I believe is blood work but I plan to ask more about that. I do have a f/u mammogram and f/u with surgeon in august . Why are you guys having vaginal ultrasounds? I haven't had a pelvic exam since menopause . My next bone density is due in August which I have every 2 years.

    I seem to be tolerating the med.ok except for a little constipation .

    Hope you all have a good weekend.

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