Starting/declining hormone therapy Nov, Dec, Jan 2018
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so anybody try CBD for insomnia? I try a couple of things but usually reach for ambien when I get frustrated. Maybe i will sleepbetter with exercise. Exercise...uhm I walk the dog, or do physical chores. No wonder I don't sleep well. Lol. Yes, weight gain is quite an issue with letrozole. I seem to be gaining 1 lb a month. Started my AI in january. Yuck. Def have to eat less.
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Hi everyone! I agree with Spoonie that this community is like a set of friends that have bonded over a special retreat, and I too value the updates and hearing from you all and sharing my latest. I'm SO sorry I've been MIA, especially with everything Spoonie you've been going through. I started to catch back up last week and oh my there has been a lot! I promise to be more regular back in, even if just to post pics of Domino and Tucker for us all.
Dani - I'm SOooo impressed with the sky diving! Go you!! I think it's great to do something so adventurous that embraces life. And hot Brazilian instructors lol.
Wised, HikingLady and others on the insomnia - I browse on my phone at night and eventually fall asleep. I slept so well during radiation but now I find myself staying up late and waking up in the middle of the night too. Snoring husband does not help but cuddling up to him does.
Ingerp - so nice to see your smiling face and I agree with the other ladies, your hair looks great!
Spoonie - OMG... I am glad you have an answer and a good MO now, infuriated at your experience and the nurses prior. I... just... can't... even... that nurse who treated you so poorly and prevented you from getting the help you needed should be fired! I feel like Nurse 101 is to understand that we are going through a major life diagnosis and this is a struggle and to at least be compassionate to patients, this is our lives we are dealing with and a diagnosis we must face daily. You deserved so much better and it was smart to bring your sis with you for support and I hope it starts to look up from here.
We are your extended family here too and support and we all check in just to get the latest update from you sometimes. Oh - on the boyfriend front, FYI I walked away from an 8 year relationship with a guy whom I was waiting for to get his act together too, and he never did. I actually thought it would be just me and the pups after that, then I met Robert, who has his act together, has been amazing through this bc journey, and whom I've been married to for over 4 years now. So it happens! I think when we leave the wrong one behind is when we make room in our life for the right one.
As for me, I do seem to be in a good zone with tamoxifen. Still at 10mg. Still have an alarm go off at 8pm every day to remind me to take it. No side effects, at least not outward. I did gain back 10 of the 30 lbs I'd lost but I don't know if tamoxifen is to blame or my trip to Italy! I lost 3 of those 10 lbs again and am also focused on eating clean and in moderation (which includes some indulgences still) to lose the weight again.
I have my mammogram coming up in October - the first one since this all started - and am super nervous about it. Because I feel fine, I feel great, and I don't want them to find something I don't see and it all starts again. It would have been earlier but I got emotionally weird about it and my Chinese calendar horoscope says my “most favorable period" starts Sept. 30th so my MO was very nice with scheduling my mammogram in my most favorable period. It's just psychological I know but I need it.
Domino and Tucker say hello, send love, furry cuddles and kisses to ALL of us but especially Spoonie. And have asked me to post pics of them here more regularly for Spoonie so I will.
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Pebbles I hear what you are saying about the mammogram. Mine is scheduled for mid October and I'll meet with my BS right after, so no waiting for results which is good. I'll follow up with my PS right after. I feel good, I'm doing well on Tamoxifen so for now I'm going to knock on wood and hope for the best because I can't deal with the same cruel joke 2 years in a row.
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Mymomsgirl - there with you in spirit on our upcoming October mammograms. I should ask my MO about immediate results... I’m also doing well on tamoxifen so far and just don’t want to have to enter any treatment other than this.
In the meantime, on the topic of not a care in the world, here are Domino and Tucker! Oh, to be so carefree... maybe one day for all of us...
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Hi
Jujibean - I just saw the special on CNN (Weed#5) regarding CBD with Sanjay Gupta last night. They were saying that CBD can inhibit many other Rx and OTC medicines - You have to be very careful mixing CBD with other medications. No one is monitoring the content of CBD, the manufactures can put anything in product. I tried 3 different types of CBD during Chemo. It didn't help me at all, and I wanted it to work! They said what worked on some, didn't with others. And, the small trace amount of THC builds up in your body and within 5 days if your drug tested you will test Positive. The show is well worth watching. Very Interesting.
So, when I start taking Tamoxifen again, I'm not sure who to ask if CBD interferes.
What did help was pot. Pain relief was instant. I felt like doing things. Unfortunately Pot is illegal in my state, so I have to take opioids instead.
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Thanks for the sweet words and adorably cheerful puppers picts, Pebbles! It's so good to hear from you and to hear that you are doing so well! That's awesome! I had hoped the reason you weren't here is that life was going good for the most part. Yay! Hugs to you my friend.
So, my breast MRI is next week but this morning I had to have a Colposcopy (cervical biopsy) as my PAP came back abnormal. I have a history of pre-cancerous cells (LGSIL) two other times so given the BC history my drs definitely decided this was needed. Not fun, but neccessary. Anyway, my OBGYN found 3 areas of suspicion that were bioposied.
Sure hope the news is non-cancerous. Will be waiting for the results.....fingers crossed news before Friday. Will keep you all posted.It seems like this journey never ever ends. Keep me in your thoughts my friends, sure could use them. You are all in mine. (Oh and EDJ3 how was your race? How are you doing on Tamoxifen? Did you start yet?)
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Ugh Spoonie--so sorry to hear that. I had a colposcopy a couple of years ago, then another abnormal PAP, colposcopy, and LEEP procedure this past summer. Funny--I didn't get worked up about it at all. I think my brain just did not have the space. I had a very "whatever" attitude about it all. In the end no cancer, though. So there's that. . .
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So appreciate you guys not kicking me out of your thread
Yeah I didn't expect that tamoxifen SEs would kick in right away, and perhaps these are from the Prolia or both. I don't know, don't really care. Just know that my sleep is crap, I'm having hot flashes which I did NOT have during menopause (don't be jealous but it's true) and I have weird aches where I've never ever had them before. I truly thought 5 mg would be a breeze. I'll give it maybe a month. We'll see.
My races went well--first one was tough. I didn't expect it to be cool and rainy so my time wasn't great but I finished 11 in my age group. The next two in the series I actually won my age group both times, which meant I also won my age group for the entire challenge. Here are the ribbons plus a well earned beer.
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Woohoo edj3–that is awesome!!!
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Wow! Way to go on all the accomplishments EDJ3!!! Bet that felt amazing and of course that beer is a nice celebration as well! So happy that things went well and all the training paid off. What a victory, seriously, to have gone through active treatment so recently and come out still running and winning races. I'm in awe.
Sorry to hear that the 5mgs is giving you issues from the start. Maybe things will calm down as time passes? I will be hoping that's the case for you my friend. I started on 5 mgs and actually did ok for the first few weeks, things I could live with like hot flashes and the odd pains and aches. It was around month 2 for me that things went downhill. Here's hoping it goes in the opposite direction for you!
And of course we would never kick you from this thread!! That's CRAAAAZY talk, everyone is welcome here cuz we are all in this together IMO. So glad you stuck around.
InGerp -> Thanks for sharing your experience. I'm sure hoping I can share similar news in a few days. Waiting is just the worst, especially now knowing the link between BC and Cervical Cancer, plus the link between HPV and Cervical Cancer. Before when I had my procedures and abnormal PAPs I didn't freak out at all, even the colposcopy's. Now it's like I'm super on alert, even though I know in my brain it is what it is....I just want to know NOW. Le Sigh. Hanging on though and trying to stay distracted.
Oh....if anyone is looking for a super funny movie to watch and is a bit nerdy or has seen the youtube show "Between Two Ferns"with Zach Galifianakis, they made a MOVIE of it for Netflix!!! Sooooo many celebrities camoed in the movie and I was laughing nearly the entire time. Good stuff. Can never get enough laughter!
Hope ya'll are having a good week. Wishing you all hugs and healing.
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Spoonie - your new MO seems smart and realistic I am glad she was there for you. Her solution seems like a sensible one. I am so sorry about the MS - you need a bigger spoon drawer so we can all send you our spoons. I am six weeks out from rads - boob is still sore inside but I am coping. Supposed to start femara this week but it is freaking me out so am trying to find a way to get myself over this hump. I have a history of miserable allergies to all sorts of meds (including the dye they used tor tattoo for rads). Mostly docs give me half doses even of antibiotics. Anyway nothing compared to your journey. Sending you a big hug. Take care of you.
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Giddyup--a lot of us started the AI every other day for a few weeks and that might have helped with SEs. I've recommended women pick a day and start taking the AI every other day--maybe an upcoming Monday. Then pick a day several weeks later to start the full dose (I picked the 1st of the next month). That might help you take the plunge.
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Edj3 - wow congrats on the race! What an inspiration!
Spoonie - have you heard anything yet? So nice to have gotten the personal message from you. And I feel for you on this never ending journey and hope it gets to a good place soon. Please continue to keep us posted. Even if I'm not posting, I am reading this thread to get the latest update on you. Hugs to you too! (and special paw hug - scroll down...)
Giddyupgirl - Ingerp has great advice. I'm ontamoxifen and started at a smaller dosage and worked my way up. Totally fine to start slowly and let your body gradually adjust - many of our MOs have been open to this approach too
I have my mammogram tomorrow and I'm SOooo nervous about it. But nothing I can do except just do it and take it as it comes.
To distract me from worrying about that, and to update all of you, I would like to introduce Finley - whom we have decided to adopt! Because we can't resist this cuteness...
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Pebbles--too cute! All good thoughts today for that mammo!!
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That is a cute little puppy!
So since I started taking the tamoxifen, my heart rate during running is spiking to unacceptable levels. Since I've tracked my heart rate for a long time, I know this is new and coincides with about day 10 of tamoxifen. I had to walk most of my four mile run yesterday morning, and cut short today's planned five mile run after just 1 1/4 because of how high my heart rate got.
In Googling, I do see elevated heart rate mentioned as a possible side effect on this site and here. I also checked side effects from radiation and also Prolia to see if either of those mentioned changes in heart rate, and they don't. So I'm afraid it's the tamoxifen.
That's pretty discouraging. I don't have a death wish, but I do need to be able to work out. When my heart rate spikes like that, it's potentially dangerous and if this is happening after three weeks on 5 mg a day, then I'm not sure I can do this.
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I haven't posted much here lately, but who can resist that adorable puppy? Pebbles, I'm thinking of you this morning, and all others nervously awaiting that first post-treatment mammogram. All possible positive thoughts going your way for good news! Mine was about 3 weeks ago, a diagnostic procedure where they read the results on site and sent me off with cheerful instructions to schedule a regular screening next year. A week later I got a letter in the mail: we're pleased to inform you that your mammogram was normal; however, you do have dense breast tissue; please discuss this with your provider. As if none of it had ever happened. So next year will be just my regular screening, except for checking the box to indicate a previous history of breast cancer. So strange to think about just going back to normal again, and sometimes I wish I had the more frequent reassurance that would come from the more frequent screenings warranted by more advanced cases, but such a blessing to think about returning to just scheduling an appointment and checking a box and waiting for a letter in the mail. I'm sure I'll always be nervous about mammograms, but I do feel like getting that first one done was a big step towards moving forward.
My hot flashes have really ramped up the past few days, and I'm not sure why. Might have been a recent change in brands, might be because of what's left of my period trying to make an appearance, might have been because I've slacked off on the magnesium supplement, might be because I'm a 50 year old woman and this happens. Still beats recurrence, as I keep reminding myself.
I'm so far behind on everyone else's stories that it's overwhelming to think about responding to everyone personally, but I am reading through and sending positive thoughts!
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edj3, My heart rate has been elevated also. My doctor suggested magnesium and it has helped somewhat. My girlfriend has been on Prolia for 5 years and she still has some joint pain from it. When I was on Fosamax the bone pain was terrible. Maybe it is a combination of the drugs. Let me know if you find a solution. I just decreased my dose back to 10mg.
PebblesV, Finely is so cute. I want him!! Good luck with the mammogram.
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flashlight, what kind of magnesium do you take? so many options!
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OMG Pebbles - Finley is so cute! What do Domino and Tucker think? In his younger days, Hector would’ve played for hours with him/her. Now at the very senior age of 18 1/2, he doesn’t have the same patience with crazy puppies as he used to. Thinking positive thoughts for your mammo tomorrow!
Edj3 and flashlight, I’m hoping the elevated heart rate you’re each experiencing is temporary.
Purplecat, I was super nervous about my most recent mammo. I saw my surgeon right after, and she said I don’t need another one for a year. I said “Are you sure?!”. It does seem odd to go back so quickly to annual mammograms, but it’s definitely better that needing them more often.
A year ago, I was finishing my first week of rads. Physically I was fine, but emotionally I was overwhelmed. The wonderful ladies on the October 2018 rads thread (including Wised and Spoonie!) helped get me through it. The fantastic women here have helped me through the next phase. The kindness, friendship and support have meant so much to me.
Here’s a photo of Hector showing Tucker and Domino how to deal with pesky younger siblings. (It was taken during a recent stay at the vet for liver issues. He’s doing much better!)
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Re: magnesium, I've posted the below link on another thread. I take magnesium glycinate.
https://www.vitacost.com/blog/vitamins-supplements/supplements/types-of-magnesium.html
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Pebbles Finley is adooooorable! No wonder you just had to have him come stay forever! Lol! I'm sure your furbaby fam will welcome him in and show him the ropes!
News for me is still pending. Thanks for asking though Pebbles.
The colopscopy came back with cells showing that my cervix is chronically inflamed & signs of "fragility". I have to go in this morning actually for another procedure to do a number of tests to determine a reason for the inflammation. My GYN says that the decrease in my horniness (OMG MY PHONE is awful dang autocorrect!! should say HORMONES! Leaving this here for everyone to have a laugh! )due to BC treatment wouldnt be the reason. More likely pelvic inflammatory disease or can be a symptom of cancer. Oh joy! Uggggh. Have to be dilated this morning so they can see more of that area. Gonna be fun....not.
Post when I know more.
Edj3 am thinking of you! Scary news about your heart rate! Keep us posted on anything your team has to say or offee. Fingers crossed three magnesium will help.
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Spoonie--ugh. So sorry you're having to spend time thinking about yet another body part.
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Pebbles- Sending good thoughts for your mammo! That pup is too sweet. I wouldn’t be able to resist either!
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edj3, I take the extra strength 400mg softgels by Nature Made.
I cried when they gave me the results, after my first mammogram, this past August!! All clear for me too!!
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I have another question for you women who are further along your timelines. How on earth did you have a mammogram done? They've never bothered me before, they were always briefly uncomfortable but no biggie. But now I have scar tissue in there, and there is absolutely no way on earth a mammogram is happening with my left breast. They won't get any compression, it's just too painful. So how are you doing that?
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Pebbles, the puppy is too cute!
Spoonie, so sorry! Sending you good vibes. Please keep us posted.
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Spoonie, so so sorry for all you are enduring. But thanks for the laugh. I laughed out loud when I read your autocorrect
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edj3, My mammogram was done 6 months after radiation ended. I still have some swelling under my arm that the radiologist said would take a year to resolve. I was worried about the compression too. My chest/ribs on the left side hurt every day and now that I am exercising I'm also getting those zingers everyone talks about. The Tech was very gentle and put a cushion like mouse pad on the plexiglass. It was uncomfortable, but I was able to do it with the help of ibuprofen.
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edj3, I was expecting my first mammogram since my lumpectomy to be painful. While one exposure pinched a little, it wasn’t any worse than before BC. It was a diagnostic mammogram, so lots of pictures from different angles. I would tell the tech when you get there that you have scar tissue that’s painful. Hopefully they’ll do as much as they can to make it bearable. Maybe they can switch to ultrasound for the most sensitive areas?
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