Bottle o Tamoxifen
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Oh a boy toy hunt and Ive got a few days to drool while I'm looking for the perfect man for you Jo!
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Hi everyone, I just wanted to follow up on Charmaine's post earlier about pulmonary embolism (PE). I have just got home after a very scary 2 weeks and a diagnosis of PE with multiple lobes affected. However, there is no sign of a DVT but it does seem that the PE has been a result of Tamoxifen. I am also on warfarin now, and have been switched from Tamox to Femara. Does this never end??
Philippa
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I too started with Tamoxifen last week, I can't have any surgery so Tamox is my only help. So far I have experienced hot flushes but only mild and definately not shed any weight but like others its onky been a few days.
My question is what would the life span be if I stopped the Tamoxifen or is that a "How long is a piece of string" type question..
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Demson - First, if I can ask, why can't you have surgery? As for Tamoxifen, it is really all a crap shoot whether we take it or not. MOs do push us to take it for the full 5 years. I have a 7 year survivor friend that stopped taking Tamoxifen after a couple of years and she is doing just fine.
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Ladies..
I iwll be offline for awhile. Willnot have access to a computer or internet ( my DD is not taking that too well lol) . You will all be in my heart as you go through appts and Jo your surgery and all who have upcomig procedures. Know you all will remain in my prayers!!!
" see ya" when I get back!!!
hugs and Love
Maria
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I have a rare chronic lung disease and the risk of a general is too high and I am told that being placed on a ventilator which I will be, would be too dangerous and that there is only a 5-10% chance of me surviving any operation. The lung disease itself is terminal and I have been given 3-5 years
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Demson... I am so sorry to hear that!!! I am sending you many prayers ! you sound like such a strong lady!. we are hear for you!! hugs!!!
Maria
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Demson, I sent you a PM.
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Demson - So sorry to hear that. We are here for you - just remember that. (((HUGS)))
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Demson, I am praying for you too! I have a friend who had a double MX and refused Tamox although the "experts" told her she would increase her survival chances.......she's 16 years out and NED! So....how long is that piece of string....it's all individual choices and you will know what's right for you....God bless you.
Followup on my nail lifting.....saw my primary today and he does not think I have a fungal infection....but gave me a topical rx " in case" and chalked it up to Tamoxifen SE.
He supports the Biotin therapy and also suggests a nail hardner......so I'll try that.
So far, I've been on Tamox for 1 1/2. Months and my nails, hair thinning and weight gain (4 lbs so far) and increased hot flashes have bee my SE's. I can understand why many people give up the regimine.....for an uncertain improved survival effect.0 -
I have tried to scroll through the last 3 weeks and catch up with some of what everyone is doing. Wow! That much eye candy at once has almost been blinding. Glad to see that most people have had good test results and onc visits. Hugs and prayers to those of you who are still waiting. Demson, special hugs to you as you face this difficult time and decisions. Would love to reply individually to each of your posts, but I think it would take me a week.
Been mostly away from computer access. Back and forth to parents home and hospital that are 2 hrs away. My dad was admitted to hospital on July 1 and comes home today. My siblings and I have been doing a lot of work to get ready and make that possible. He was diagnosed with cancer. God I hate this disease!! I kind of feel like I was the warm-up act in our family so they have some idea how to cope. No one else in our large family has every had cancer. At least they didn't run for the hills at the word this time. I take some comfort in my diagnosis now that I have been able to help my dad deal with his diagnosis.
Still waiting for my gyn referral to deal with tamox SE's, but I am glad it is taking some time over summer. Don't really want to deal with it right now.
Hope everyone is having a wonderful summer and that everyone gets to dip their toes in some water or sand.
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Demson have you in my prayers girl!!! I know that it varies on your final path report. At least thats the way I understand it to be. My Onc had shown me the stats acordding to my tumer size and type of cancer I had. I'll look for that paper this weekend and see if I still have it.
Part of me moving forward with this cancer was to get rid of so much info that was cluttering my desk up. It became like a security blanket to me and so much of my daily focus was on that. I decided to get rid of as much of that paperwork that I could because me personal I felt I can't move on if its still there taunting me as I would pass it. I need some kinda closure on this and getting rid of all the papers is something I needed to do so I could move forward.
Jane big hugs for you girl! I hope that your father does well with treatments.
Jill I feel ya on the hot flashes! Even after being on this for a year, I'm still fighting the hf like crazy. There for a short time they seemed to lighten up for me, then bam came back with a vengenace. Normaly I can handle this heatwave we're having, but man oh man when a hf hits, its like it 600* out and the sun is trying to burn me up.
Well all I guess I better get back to work!! Take care my sistas! Love and Light to you all!
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Linda- thanks!....yeah..last year was not my favourite...feel 1005 better ...lots of energy, air and breath...how are YOU?!So glad you enjoyed your visit with your sister
Feisty- being on tamoxifen for 4 months last year caused a blood clot and I ended up having a heart attack....glad you are on warfarin...this is not to be messed with
Demson- oy...BC is not what you needed...but you are clearly choosing life because you are reaching out and seeking information. Good for you...this is a place of support and love and kindness...you can'tgo wrong here.... I tried an AI the fall after I was taken off of tamoxifen...lasted twmonths but the swelling scared me because of my heart. I have not had any medication and just had a clear mammogram....my second. don't think anyone can give you the numbers other than your oncologist....have to weigh the benefits with the problems it can cause...lots of women have no problems at all. remember too that most folks who do not have problems on it do not seek out the advice of others....which we have all done here....so...we are not necessarily the norm, hmm? just he ones looking for support.
bgirl- so sorry to hear about your dad.....perhaps you WERE the canary...the strong one to teach others how to be when the diagnosis came...sending love and positive vibes your way
paula- yeah...information is indeed security...at least it gives us the feeling of control of some kind, hmm?
Ladies, I just accepted a job in the Middle East teaching English...leave mid August...managed to mess things up at work this week by asking for a leave of absence for a year...did it as soon as I heard word on the job and am, in fact, giving two months warning prior to th ecourse I was to teach.....the fact that I did not tell my boss specifically where I was going has led him to chastise me like a three year old ...I really, really need to learn how to let go...I will still have access to this site but....boyoboy....this has been a weird week....I am SOOOOOO sick of appointments....SOOOOOO sick of crap....feeling lighter and know that leaving is a GOOD thing but holy jumpin's....I amnot surprised but still disappointed...silly hmm?
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Congratulations, Sandee!!! What an adventure you will have!
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Sandee, hope you have a wonderful time.
Thanks to all for the hugs. Unfortunately my dad was diagnosed with late stage disease. He is also 83 and so options are limited, mostly palliative. Happy to have gotten him home for now. Looking forward to try to help him enjoy what he can right now. One day at a time as we all have learned.
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Congrats Sandee!! I've learned that no matter what you do for some people that you work with, nothing you do is ever the right thing. Even if you are doing the right thing in their eyes your doing the wrong thing. I know things are going to be crazy for awhile but when you get there and settled, post pics of your new place.
Jane, enjoy each moment as they come. Laugh, cry, hug, sit in quiet (just being there), most important love as much as you can. I've added you and your family in my prayers.
Well last night was a very moving night. I was asked to be on my cousins relay for life team and went up there to walk. Well this time I managed to not turn into a pile of tears until the luminia ceremony, when there on the gaint screen (all the while they are playing songs that tug at your heart) there flashed my name in giant letters. It didn't help that the song, Live Like You Were Dying started just as my name flashed on the screen. I still sometimes have a hard time with this and seeing my name up there like that still tugs at me sometimes. It brought me right back to that very moment in time when I got the call. I'm also blessed and humbled that they bought a luminia in my honor as well. They did it last year also, but I didn't know because I didn't walk then.
Well all I'm going to leave you with this one simple yet powerful word for the evening WWWWWWWWWHHHHHackkkkk!
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Paula - As I was reading about your walk, it brought tears to my eyes. That must have been a very moving moment. So glad you are here with us. You will have many more walks to attend.
Having lunch with a sister today. Can't wait. I am fortunately enough to live fairly close to her and this is the third time we have gotten together. Today is a very special day for her. It is her first cancerversary and I have the honor of celebrating that with her.
Tomorrow is my recon revision. Excited and nervous at the same time. Paula - I am anxious to see what kind of eye candy you are going to come up with for the pocket party - LOL!.
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Jo have a fun time at lunch today!! I'm happy that your able to meet up with her today. Here is you focal point for tomorrow, enjoy!
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Paula, Sister, girlfriend. Once again you found some eye popping candy. That will most definitely do the trick. Since I will just get a local, I will be awake and this distraction will be nice.0
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Aloha fellow Tammi girls. I'm just checking in to see how you all are doing . We are finishing up our first week in the islands and heading over to the Big Island tomorrow. This is just what the doctor ordered for DH and me! Husband is taking a nap in the chaise next to me and I am having a glass of wine while catching up with all of you as I watch the beautiful blue Pacific in the distance. Jo, I hope all goes well for you.
I have had real bad leg cramps too. Doing legs up the wall yoga pose before bed helps as well as stretching like others have suggested.
Well, need to run. Husband is stirring. Sending thoughts of wellness and peace to all.0 -
1openheart - So glad you are having a good time. Sounds like just what the doctor ordered. Can't wait to leave for our cruise at the end of next month.
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Jo good luck tomorrow. I know your PS will make you look wonderful.
Sandee congrats on the job sounds so exciting.
bgirl so sorry to hear of your dad. Several of us here have been through the same in the last year so we are here for you.
Paula I always cry at Relay
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I'm back!!!
Boy that vacation was sooo needed. I have over 3 pages to read so I will catch up later tonight. Hope all you lovely ladies are doing well.
Paula how are things going for you and your Mom?
Jo surgery getting closer, right?
Thinking about each and every one of you and Happy Monday!
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June - How about this afternoon. Got it moved up 2 weeks. I want to be nice and healed before my cruise on Sept 2nd. So glad you enjoyed your vacation.
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Oh good luck Jo and I will be in your pocket today for sure......so glad they moved it up so you can totally enjoy your vacation......love and miss ya!
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Pocket party for Jo today!!!!!!!!!
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Jumping in the pockets Jo!! Junie is back so I'm sure that its not gonna be quiet, hee hee! I know she can be pretty wild and of course will try and blame it on me.
June I'm not doing to bad. Wednesday is the day I go have the biopsy done. I'm ready for it to be done and over with. Bad thing is I have to wait uptil next Friday to talk with the ONC about the results. But hey I'm keeping it positive so it doesn't get to me to bad.
Mom is doing good. Her foot at times bothers her, but she hanging in there with it. I know she's board stiff because all she gets to do is lay in a hospial bed. The insurance company is still being a pain to deal with. Good thing my older sissy is dealing with that so my mom can just focus on getting well. They are letting her stay on a week to week basis. Each week they have a meeting with all of her caregivers for a status report. If she is doing good then the insurance company will kick her to the curb, ugh.
Well all I guess I better get busy, love and light to you all my sistas!!
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Hi Everyone!
I am now in my 3rd year on Tamoxifen..only 1.5 years to go. A side effect that has gotten me twice on this medication is an overgrowth of the uterine endometrium. Last year, I had a pelvic sonogram which showed this, and because of the thickness, my gyn insisted on a biopsy, which was done in the office (negative for cancer).
After the biopsy, your uterus sheds the lining. Unfortunately, this year, I was having severe pelvic pain, and another sonogram was ordered. This time, the lining was even thicker than the year before, when I had been on Tamoxifen 2.5 years then. So, tomorrow, I have another biopsy scheduled. It is frightening to think that a medication to prevent cancer can actually cause it....
My message is that, if you gyn hasn't mentioned getting a pelvic sonogram when 1/2 of treatment has been completed, you should remind him/her as this is considered a best practice.
Regards,
Jo Ann
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Jo, hoping your surgery is uneventful and productive!
June, welcome back!
My house has been like Grand Central Station for the past 2 weeks - several overnight visitors, I drove home for my 40th high school reunion (my first solo road trip in 2 years!!!!
). My energy has been really good since the new meds started nearly 2 weeks ago. I feel nearly "normal" for the first time in nearly 2 years!!!!! (only major complaint now is this d*%$%$d neuropathy!!)So tomorrow I have PET/CT scans, 6:45 am, will get results on Thursday. Please jump in my pockets for the week. It was 2 years ago this week that I got my first diagnosis, 1 year ago got my recurrence diagnosis. So I do have a bit of scanxiety, and don't know where I would be without you all. (Paula, I like less ink, less wrestler/muscle-bound, but young and firm with lots of skin, please??? - hint hint)
Paula, I will be in your pockets this week as well, and anyone else that needs me. And am just plain envious of all of you going on exotic vacations, but so glad for you! Soak up all the sunshine and joy you can!
Hugs to all.
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Linda - I want to be the first to jump in your pocket. These girls can crowd you out in a hurry. LOL! Keeping fingers crossed for clear results.
Joann - I have also had issues with Tamoxifen making my uterine lining thick. Last year I had been on Tamox for 6 months and insisted on a transvaginal US and ended up needing a biopsy and D&C. Fast forward to this year. Wanted a repeat US done and this time had another biopsy and D&C - this year the GYN removed a 3 cm polyp that was Tamoxifen induced. WTH??? So, next year I will insist on another US and no matter what shows up or doesn't show up - I think it is time for a hysterectomy. Tired of living in fear that this drug is going to someday give me cancer at the other end.
OKAY! Pocket party is over you gals can get out of my pockets now. My, were you gals ever rowdy and without Tink. Must have been June's fault - LOL! The procedure went very smooth and I was done in 20 minutes. He fixed the area I wanted done and he also fixed another spot he did not like. I go back in 10 days once this has all settled down. Hoping this next appt will be the last. My PS is amazing and I really like him but..... time to say goodbye. Thanks so much everyone for going with me.
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