CALLING ALL STAGE I SISTERS
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AWESOME News GrannyD!!!
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{{{GRANNYD}}}}
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granny what a good news.
(((Hugs)))
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Sheila - Merhaba Nasilsiniz? Love the flowers at the top - they are beautiful.
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Great news, grannyD, that's just the first step of many to come!
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here goes folks...This is my personal experience with Arimidex. I bit the bullet and decided to try it. I was fearful that in myown way I was outsmarting myself by not taking what every medical professional told me I needed. One pill, that's all I took. I decided to try it at night, before I went to sleep. I was calm and actually thinking it would be a good thing. I took a bath and went to bed. I fell asleep shortly after. Then I woke up. And went back to sleep. This repeated itself through the night interspersed with bouts of explosive diarreah. I woke up (for tenth time) and got ready for work feeling like I was on the worst kind of speed. I skipped my vitamins as I did not want any extra enhancements adding to the mix. One pill, the night before. I got to work and was hyper and of course tired, from the lack of sleep. But felt like, ok, if this is the worst, I will just take the pill very very early in the morning and then I will be able to sleep. Maybe the diarreah was stress or something. That was fine until about 1pm in the afternoon, I was standing outside talking to a friend and my left arm went numb. Like I had just woken up after sleeping on it. I shook it and commented how odd it felt. Then she looked at me and said how glassy my eyes were and I said not much sleep last night. I sat down and then my left leg was tingling. I said this is ridiculous, it must be from me being scared or something, one pill could not do this that quick. So I got up and laughed it off and went back upstairs to the office. By the time i got back my eyes were watering and I felt my head was pounding,my eyes were burning and red.I shook it off, again, saying this is CRAZY, I must be getting sick. My brain was completely spinning. My sister came over and asked me what was wrong as my eyes were so red and glassy and I was holding my arm funny. I said I did not know. I hadnever felt this bad in my life...inclduing when I go the BMX...at least when I woke up from that I anticipated something would hurt. But this was weird. Like nothing before. I called my husband and said I didn't know if I could drive home so to hang in case I needed to call him. I made it home crying the whole way. By the time I got home I was convinced it was not the pill but that I had undergone a small stroke. My neck was was sore and the left side was weirding out. My husband got home and sat withme and got me to take a hot bath. Once I sat back in the tub I got really really MAD! I said I must be nuts honey...because one pill could not do this to a person. He corrected me and said I knew better than that. He reminded me of the two times in his life when he had violent side effects following the first or second dose of two different drugs. He reminded me of the drugs back in high school that people (him and his friends,not goody two shoes me:) took and how one little pill did an awful lot. I started crying harder. I sadi what if it doesn't get better? My arm and leg are numb and I have shooting spur type feelings in my foot. My neck hurts and I my stomach is rumbling loud enough for him to hear it. I turned on the jets in the tub to massage my hold body ...and kept crying. I was too scared to take a tylonel or an ativan because I did not know if it would make &it& worse...he told me to get mad so I would not be scared...(he knows me well) so i did. I went on to say not only would I not ever take a FRIGGIN AI of any kind again but I damn well would quit smoking without adding more drugs to the mix. Somehow I had slowly started to buy intoit all...the big name hospitals and the big name docs telling me I NEEDED THIS STUFF. Now don't get me wrong...i am not a fool and if I had a more agressive cancer I damn well would do what was neccessary. BUT...this is why I had a BMX, this is why I started a regimen to suppress the estrogen naturally based on clinical trials...this is why I changed my diet, this is why I decided to stop smoking...to battle the BC so I could live a good life. So I got good and mad. Mad atmyself for not trusting my gut which has led me right since all of this began. I was mad that there untold women suffering horrific side effects so they can make some magical 5year mark while their life is compromised in so many other ways along the path to get there. NO. My sister called as she was worried about me and said she had never been so scared in her life when she saw me that afternoon. And let me tell you my sister is no alarmist and in fact would be the first one to tell me it was inmy head. She said you know, maybe that is why so manypeople can't believe you have gone through all of this...as you are healing so well and have generally been getting stronger and healthier...maybe if you had taken the AIs right after surgery like they wanted you to you might have been sicker like everyone seemed to expect you to be. And maybe you would not haveknown the difference thinking it was all part of the process of breast cancer. That you were supposed to feel like &hit. And I thought about that and I have to agree. Don'tget me wrong, I have had some rough days since the BMX but not anything like what happened to me yesterday. But if I hadnot had eight weeks of healing before trying this poison how would I know how to feel? I had never had breast cancer andsurgery before...all of the symptoms would have gotten swept up in the general Bc aftermath....Let me say this, Ivcould never have dreamed it would hit me that hardvthat fast. I stayed home from work today and rested. As the day has gone on most feeling returned with just my upper arm and elbow and knee and heel tingling/feeling weird still. My stomach is racked. A little gross aside...I went to the restroom and after wiping...there was blood. Now I know where I wiped and have neverhad blood from my rear before in 54 years. I start screaming a bit ago for my husband and we looked it up...yep, one of the rare side effects...I missed that one in my reading..I am hoping that I had a hemi I did not know abotu suddenly decide to bleed (dont they do that? soemtimes) from all the diarreah....If it continues until tomorrow I will go to doc. But i am sick of docs rightnow. Pissed at docs right now. So here it is almost 24 hours following one dose of arimidex. My story, my experience. No wonder so many write of their pains, I will never glossover those plaintive writings again when reading them. I truly believe none of them are exagerrating and they must feel like theya re going nuts to have that stuff start popping off in their bodies. My case might be unique and the effects extreme. I can only liken it to a poison that my body is trying to get rid of. The bitch is the drug can linger in your system for 50-60 hours. I will stick with that and not pay attention to someone who called astrazeneca and was told each dose can actually remain active within for 10-11 days. Nope. In this case I will use mind over matter to get over this mini catastrophe. And be grateful that now I do not have to play the what if game. I don't care what brand or formulation, I will not put it in my body again. It scared me and I hope I don't have lingering anything from it. God bless all of you who can handle it. I cannot.
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annettek...I'm so very sorry for everything.
You must been very scared. Sometimes it happens and DR's would think anxiety is causing it..
I got sick years ago from lipitor. And the SE weren't even listed anywhere but one of my Doctors looked at 1 in 10.000 SE and there we go everything was experiencing was in that book.
You try to have a Good Night.
I'll be thinking of you.
Please post how you are doing.
HUUUUUUGS♥♥♥♥
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thanks so much my friend..i have to say i have never been so scared in my entire life...I will report it to the fda as an adverse event....yet those don't have much impact. I'll be better tomorrow andmore so the day after that. I will use this as a positive to trust my head and my heart...and that little woo woo thing I got floating around in my psyche telling me what is right and what is wrong. Need to trust our gut feelings more...I am surprised I over-rode mine in this matter. But it is ok. I learned. I wish i had alittle paklava to send meinto a honey rush:) will have to go by Abdullah's bakery tomorrow and grab a couple..although, it is not as good as mine:) I learned how to bake it years ago to give Dad a christmas gift...did not know what to buy him...he loved it...said he had not seen it made for over 60 years when he was a child...but then, being my dad, he said his mother made the pastry as well...HAHAHAHAHA...ahhh how nice, I will end the night on good memories...night to you too:)
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Annettek, wow that is scary! I know I have had some side effects with various medications in the past, but nothing this extreme. I hope you feel better soon.
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Sometimes i order things from Tulumba.com and if you have time to play around and spend $25.00 and up to 4 pounds shipping is free.
I will send you a picture of a tray of Borek my DD in Hawaii made and post it on FB.
You have a Good Night Sister.
♥
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(((annettek))) - I am so sorry you had such a bad experience with the AI. Sometimes we just have to trust our instinct's. I took tamoxifen for 9 months against my better judgement and although my SE's were no were near what you experienced, I am glad I stopped when I did. One month later we found a second primary (thyroid cancer) and if I had continued taking the tamoxifen I would of had to wait several weeks for surgery due to tamoxifens potential to cause clotting issues.
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annette ~ I am so sorry you had to experience all that. You must have been so scared. It worried me reading it, wondering what was going to happen next. Sending a ((gentle hug)) for a much better tomorrow, dear sister/friend. ♥
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grannyD ~ Such wonderful news! I hope each day brings more improvement for your SIL.
hugs
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{{{ANNETTE}}} Wow, I have my own reasons for not taking arimidex but your experience makes me glad I didn't! I am one of the rare people who does not metabolize any drug well. Thus, If I take the regular dose I OD. I keep telling my docs that but they poo poo me. So I just get the pill cutter out and am fine. Big (((HUGS))) to you and a prayer each day until your arm and leg get back to normal.
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Thank you all....i am going to act "as if" today and hopefully the left and arm keep behaving..just my elbow and knee and ankle and rumbly tummy right now and that is already half as bad as it was yesterday. I appreciate all you said...I will report this an adverse event to FDA. You know maybe docs need to test a sample of what they are prescribing to us...just saying...
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((((annettek)))) - so sorry you had that horrible experience. Believe me, I'm starting tamox in less than two weeks and I'm nervous about it. Maybe it is because you've been so healthy with everything and then this foreign substance entered your body (sounds crazy, but you never know). The good news for me as that I am NOT a healthy eater, so that tamox will fit in just fine with my body!
Good morning everyone. Beautiful and springlike here on the east coast...loving it!
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granny - wonderful news about your SIL! I read on the rads forum you were still having SE from the rads even after being done - so sorry for that. ((((GRANNY))))
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Now, let me pull my head out of my own &ss and SAY HOORAAY Granny and Barb!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Granny: What wonderful news about your SIL! Can't wait to hear more of the same!
AnnetteK: What a scary experience! Sending hugs!
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AnnetteK---words cannot express how i feel.Most of the sistas know I HATE ALL THOSE MEDS and yes they should give them to their wives and mothers first to try and then lets see how fast they try to shove that crap down our throats.MY gut told me NO.and its NO.I did try one of the As.stomach was ready to explode.knife stabbing pain.not listed as a SE.NO THANK YOU.
On another note thank you my sistas for all the prayers.Yes my SIL opened her eyes.thats a start.this is a slow process.The first step to recovery.
I was having real bad burning from the rads.after tx.the way it came is the way it left.Thank God.
yea this is the gift that keeps on givin.huggggggggggs K
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First of all, thank you for the 'POSTING', information ----- I swear, I was freakin out .. didn't know what I did wrong!
Interesting .. guidelines
Vicki Sam
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I opted for 16 weeks of consecutive weeks of TCH, continuing for 1 year - Herceptin. Bi-lateral mastectomy on 1/12/10..
Taxotere, Carbo .. combo took its toll on my. fatigued, fainting --- lost 3 toe nails, continually rashes, and hives.
Hydrate .. Hydrate .. hydrate ...
Strength to all .. there is a light at the end of this tunnel.
Vicki Sam
Diagnosis: 8/14/09 --- DCIS, Her2 positive, ER/PR negative, Stage 1 .. tumor 3.9 cm - Stage 1, grade 1
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Vicki...I almost lost 2 big toe nails but new ones grew.
How are your fingernails with Herceptin/
♥
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Sheila - There is alot of truth in that. Love the Pic
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pic is beautfiul. as is th sentiment
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still cloudy .. white large white spots .. yep, look pretty ugly. Brows and lashes are back in full force, prior to chemo therapy, start up.
Funny, right?
Vicki Sam
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I went for my followup with my onc surgeon. He referred me to an onc Dr. He advised that if I did not do anything further, my survival rate is approx. 85%. If I have my ovaries removed, rate goes up 5% and if I go on hormone therapy, rate goes up another 5%. After reading all the SE's of the hormone therapy, I'm wondering if that 5% is worth it? Any comments would be appreciated.
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slinky. many of us have minor or very manageable SE's. you don't read much from us because we have little to complain about. So far mine have been sleep problems and some toe and foot cramping. After three months the sleep problems are abating. I'm up tonight with a back problem which has bothered me occasionally for years, long before BC. I am post menopausal but am on tamoxifen because I could not handle the Al's. I got extreme joint pain from them.
I had no chemo but did have radiation. The side effects from that have been more annoying than anything else. Remember we are all different and have our individual reactions.
What ever you decide, It should be what you feel is best for you. For me, I don't want to be in a position five years or so from now to wish I had chosen more aggressive treatment.
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