No treatments for me.
Comments
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Celine, I suspect you will never quit missing her. I have occasionally let my thoughts wander into the "what if's" about my mom, she has a boatload of health issues that she just deals with and doesn't worry about tomorrow, so I am trying to do that as well. And I am enjoying her here and now, treasuring the moments that I DO have with her.
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so well said Linda..thank you
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Hi All,
Passing by to say hello. Hope, after your op, pain level is improving every day Cin. Praying for you.
Ali, hope gynecologist apt goes well for you. Good luck off the Tamoxifen, you sure sound sick of it!. I hope things will improve pretty quickly for you with regard to SE's.
Linda, yes, having happy thoughts today, sun coming and going but I'm enjoying the day.....
lorna
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Two doctors tried to get samples but i was in too much pain. Will have to go next week for hysteroscopy with local.
My lower back is very bad and tummy. I need to get this sorted.0 -
Ok just when i had my head around not taking Tamoxifen my eldest daughter called me. Her house mate who's mum had breast cancer ( lives in Germany and no chemo only surgery) just found out she has throat cancer.
My daughter is upset and wants me to go back on Tamoxifen.0 -
First of all, to the grand dame of the thread - Cin - if you come out here I wanted you to know that I miss your "voice" and hope you can check in with us soon. Hope the surgery relieved some of your pain and discomfort!!!
Hi Ali, I've been reading your posts (and everyone's out here) but just too crazy here to sit down and properly respond.
#1 - the hyster is the best thing that ever happened to me - I developed huge uteran fibroids and was bleeding heavily 20 days a month, then on progesteron 10 days. Horrible. We should get rid of all optional body parts that cause you distress or can kill you, that's my new motto! Also let them take the cervix - no more cervical cancer scares or bad paps. Oops, meant to mention I had mine vaginally and recovered very quickly. I kept my ovaries, didn't want to start menopause at 42 and have to take an hormones and feed breast issues.
#2 -do what is right for YOU. If that means going of Tamoxifen, do it. my mother has taught me that by making her own health decisions (some that I disagree with) that it is her body, her life and her decisions. this is a tough lesson for a child to learn, but more will follow - such as do not rescucitate orders, cremation, whatever. Look at Cin and her choices. It's our life and we walk the journey, no one else. I am sorry Tamox caused you so much distress.
At some point, quality of life becomes extremely important. I feel like the older I get, the more this outweighs other things....
Linda, love and hugs to you, sweetie. Same for Celine, hope you are healing well.
Ladies, I will do a better job of staying in touch, I love all of you and worry/care! xoxo
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well said Carp!!!
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Went to my GP today ( woman) told her all my SE from Tamoxifen. She brought me to tears because she told me to get fitter and eat more salad's.
ok I said how do I do that? when I can only walk an hour a day on flat surface. Told her I eat fish and salad most days.
None of the doctors will give me a straight answer to - how much is Tamoxifen helping me? If I stop what are the chances of getting another cancer?
I asked her what she would do in my place knowing how terrible the SE are. She said " that's an unfair question I can't tell you"
Heard from Elaine yesterday and she's doing good, no update on Cindy.0 -
ali...What are your SE'S on Tamoxifen, I have pain in my left hip and thigh that is pretty bad most of the time.
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Hi Blondie, thanks for liking my advice and hope you are doing well :-)
Ali, this really made me mad "get fitter and eat more salad's" - seriously???!! That is ridiculous. OMG.
I don't think there is any way of knowing how much Tamoxifen helps. Some women who take the 5 year course still develop cancer again. Some don't. Some would have without the Tamox - who knows?
The question is this - if you find yourself with cancer again in a few years, will you regret not taking the Tamox and beat yourself up??? Or will you stand by your decision to choose quality of life now (and for the next 5 years) over rolling the dice with a drug that sometimes doesn't work and being miserable with SEs?
I think the answer is different for all of us based on where we are in life's "seasons", as I like to call them. I am heading into fall and feeling much different than when I was in spring, or even in summer...
Hugs to you and don't let the dumb GPs get you down!!
PS Is Elaine ok, I worry about her.
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Hello Dear Friends,
All's well on our homefront =0) I talked with Cindy for a little while today and she says she's "alright." She was really groggy and sounded like she was in a good deal of pain & pretty out of it. She says she had her operation either Monday or Tuesday this week and still had the stiches around a tube for draining the abscess. The doctor apparently took some liberty while removing the infection and took most of the tumor out, as well. I don't know really how to feel about that & I'm not sure how Cindy feels about it. She says he took about 75% of the tumor out, and some tissue around it both alive and also necrotic -it's pathology report was the same kind of cancer elsewhere ... really rare & really aggressive. She said she somehow pulled about a centimeter of the tubing out, but the wound is still draining -she veto-ed the trip to the doctor's office today to have it re-inserted, saying that it can wait until she goes in to have the stitches removed ... She also said she's got another infection in her leg from rubbing against the side of the wheelchair.
I asked what made her decide to have the operation and she said she'd been in Hospice, waking up every 2hrs crying in pain. They told her the operation would relieve some of the pain & she said ok.
She is able to get around minimally -she says it's really hard having 1 arm and 1 leg. The recovery is supposed to be a couple weeks.
Now, Grandma Cindy Rose ... that's such happiness! She got special permission from the doctor to be in the delivery room for the birth of baby Aleeyah Rose!!! Oh my goodness, she sounded sooo happy! She and her DS held the baby while Mom was getting cleaned up -she says DS was all over the place excited to finally meet his daughter. Since then, DH and Cindy were able to briefly "kidnap" Aleeyah and jokingly threatened to not give her back
They spoiled her for a few hours and she was back in the loving care of her parents ... both Cindy and her DH are enamoured with the tiny bundle of joy ...There was one thing Cindy said today that completely caught me off-guard. She asked me how much money it would cost for me to come back out for a few days. She's not once asked me to come back out -she's said thank you & she missed me repeatedly, but not to come back out. I told her I didn't know, why? She said she misses me. Can you almost feel my heart fill with so much love then fall down cuz she's on the other side of the blasted country!!??? Ugghhh! Back at Christmas, we really didn't anticipate her living too much longer, let alone until Aleeyah was born ... now she'd like me to pop in for a couple of days LOL
As for me, I "unplugged" for a while ... and have been working in the yard -creating for the first time ever -transplanting healthy, hardy plants from a friend's yard to mine. I started with about 10 plants, that I put in the middle of my 2 Bradford Pear trees. Then got red mulch to put around the trees -then put white concrete pavers around them, and another circle of the white pavers around the plants in between the trees. I really liked how that looked. Then my friend said I need to take some more plants, I said sure, no problem! So, I staggered the plants in between the trees and decided to just make a big long oval across my front yard with the plants inside with mulch and have the pavers enclose it all .... now there are about a hundred!!! plants in my yard ... including a young lilac tree, a young rose bush that will hopefully thrive and produce yellow roses, lots of purple irises, lots of buttercups, variated hosta, sebum, and some other stuff I've forgotten the names of. Planning more outdoor work, improving the curb appeal LOL while getting some exercise and fresh air and enjoying the peacefulness; work at the spa is picking up with Mother's Day ... I have 2 new personal clients, and 5 potential from a "Spa-rty" (spa party .... when I go and tell a group of people about massage, reflexology and aromatherapy, the benefits & answer questions, etc) and the big thing they're amazed with is that I am completely mobile -no office for them to come to, I go to them!
Lots going on -spring has sprung! Please know I think of you all often, what you're going through, and send lots of love and positive thoughts out multiple time each day -so, I may not post, but I'm still thinking about you. Your caring and sharing with each of us is truly priceless -you all matter so much, don't ever doubt that!
Lots of Love, Hugs & Peace, Elaine
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Tears of sorrow and joy!!
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Ali...coincidentially I saw my BS today for a mammogram..all is well. Prayers were answered and I go back on the yearly schedule. I am 2 1/2 years out from my DX. Anyway I was complaining to him about Tamoxifen. I have yet to talk to any woman who is taking it who doesnt have complaints. Okay we all know we would have SEs but when those side effects totally disrupt your life than what? My BS told me to talk to my ONC(seeing her next week) because there are meds(of course there are) that can help with the hot flashes, lack of concentration, etc...just what I need more meds. Trying not to whine but I know several people who quit taking tamoxifen and are okay. Finally, my BS told me if he had to chose chemo or Tamoxifen for me it would be Tamoxifen. I frankly am afraid not to take it. According to my Oncotype report I have an 8% chance of recurrent WITH Tamoxifen. I just dont want to take that chance so I will probably continue on and complain.
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Elaine thank you so much for writing to us. I miss Cindy. I hope you get to go visit her soon.
Your flowers sound wonderful and you have a bundle of energy. FLower gardens are my favorite.
Love to you both
Ginger
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You're all welcome for the update
Just a thought to those having hot flashes & depression as SEs ... I've started studying aroma-therapy and --though I do not begin to suggest I know about contraindications with medications you may/not be taking ... there are some inexpensive natural essential oils that may be beneficial ... peppermint & lemongrass essential oils *not fragrances* are known to help reduce/eliminate hot flashes & depression due to hormonal fluctuations .... clary sage and Geranium for mood swings ... these are not the only ones =0) Cynthia Loving is a caring & dedicated woman whose experience is amazing -known world wide, too! She does personalized consultations by phone ... if you'd like to explore this avenue her info is below
www.lovingscents.com
Cynthia J. Loving is owner of LovingScents, an international instructor in Clinical Aromatherapy and a Licensed Massage & Bodywork Therapist
Hugs, Health & Happiness
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Elaine, so glad to see you here! Please come back as often as you can - we miss you! We miss Cin, and it sounds like you don't get to talk to her as much as you would like, probably she is on lots of meds which makes conversation difficult. You are both in my heart. I sent you a PM a couple weeks ago - please check it if you get the chance.
Edwards750, I am not sure what stage your cancer was, or what treatment you have already done, but if I had HAD a choice between tamoxifen and chemo, I would definitely have chosen tamoxifen with its SEs rather than chemo with ITS SEs. I asked my original MO if I could just do tamoxifen, and she never gave me a straight answer, chemo was the worst thing for me, which she followed with about a gazillion other meds to try to counter the SEs, and I ended up with way too many meds, way too many SEs on top of SEs, and I lost all trust in my MO so wasn't able to follow through on any of her other recommendations. I don't know if I would have had recurrence so soon if I had been able to continue the tamoxifen, it will always be a question.
Ginger, Ali, Carpediem, Blondie, Celine, Goodprognosis, and everyone else - have a good weekend. Let us be thankful that Elaine is joining us periodically, that Cin is enjoying that new granddaughter, and that Cin brought us together.0 -
Sticking my head up out of the parapet....having my own medical dramas. Hope you are able to get together, Elaine and Cindy!
Love to all.
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Great to hear from you Elaine. I know you will give our love and prayers to Cindy when you next get to talk to her. It's great she knows how much we all love and pray for her to be peaceful and pain free. Hopefully, the operation will help her get some more quality time.
Love to everyone here and have a wonderful weekend.
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thanks so much Elaine for letting us know, what are you going to do....about Cin and her request....
HAPPY MOTHER'S DAY WEEKEND.....LUV TO YOU ALL!!!
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Hello everyone, I know its a long time between posts now. I did have the surgery to remove the infection around the tumor, which is all I wanted done because I was told that he could just make things worse by having more tumour pieces. My then one tumor is now about five. I guess what's done is done. I was outside with my tiny shovel this morning and into the afternoon. I felt so much better after doing some work. I do still have a drain coming from the surgery site but the fluid's slowing down, and then I might be able to go upstairs again to lay in my big round tub and maybe even sleep in my own bed again. I miss sleeping next to my Rick and I wake up every few hours from my hospital bed downstairs in the dining room, thinking I'm hearing him stop breathing. He does that sometimes and I give him a little pinch. He sits straight up in bed and I go back to sleep. My tiny little Aleaha Rose is simply perfect, and now has way more clothes than she'll use before she grows out of them. I told them to save everything because that second baby tends to usually comes pretty close to the first one.
I hurt so much but my pain meds are doing the best I can hope for after being on narcotics for so my hears for other things. I've changed my need for M&Ms to fritters...any kind. This week it's been apple and Rick has been going out at all hours trying to find a baked item that's usually only sold in the morning before everyone buys them and eats them. I think it's a conspiracy to keep me from sugar of the moment. I may have to find something to change to when I'm tired of said treat. Apples and peanut butter to dip in always is a great substitute.
Anyway I have to go back to bed now . I'm really not supposed to be doing as much as I am and I certainly don't want to be the cause of any post-op issues.
All my love to everyone.
cin
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So happy to hear from you Cindy. I've been on Swedish Fish lately. I hope you have a wonderful day tomorrow, Happy Mother's Day Cindy.
Love Ginger
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Cindy,you amaze me how you bounce back and get on with living. You put me to shame and that's why i love you for giving me a kick.
Went out in my car and had a good drive and chilled out. Going tomorrow for exam on lower regions. What a joy it is to be a woman- not.
Love to everyone xx0 -
CIN thanks so much for checking in and so happy that the baby is making you happy.....we are with you in our pocket all the time!!
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Cin - so great to hear you doing so well. Love to you!
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Great to hear from you Cindy !!! Enjoy the baby- and the gardening.
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Cin, so glad you're back in the garden! Glad the surgery helped you gain some mobility. I also hope you can get upstair for a soak and to sleep next to hubby, how wonderful that would be!! I laughed so hard about the apple fritters, too funny. Perhaps Rick should learn to make them?!I wonder if a good substitution would be pillsbury crescent roll dough, wrapped around a few apple slices, with butter, cinnamon and sugar, rolled up then baked? Mmm!! Throw in a scoop of vanilla icecream?
The grandbaby sounds amazing, enjoy her! Glad your family is doing ok. I hope Elaine can get back out to see you soon!
Thanks for checking in with us, your voice and spirit were so missed out here in cyberworld. Love and hugs from your friend.
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Cin, so glad to see you checking in! Am glad you are enjoying the new grandbaby.
Glad to see all you other wonderful women checking in, too. Sorry to hear of issues for several of you, happy we are all keeping each other in heart and prayer. I, too, am having issues, was just hoping for 4-6 months of minimal appointments, but that seems to be not in my future. I developed either LE or vascular blockage from axillary tumor, or both. Going to LE therapy 2-3 times a week, have seen rads onc who wants to do MAJOR treatment - didn't seem to understand I am just wanting palliation, not cure, have been referred to neurovasc surgeon to see if that is an option, MO thinks chemo might help tumor shrink a bit for comfort but not cure - at least she readily admits that there is no way to go for a "cure" at this point, but does want to keep me functional. So more appointments, and need to start checking out hospice options. Just wanted some time to do some art without having to interrupt to take care of this defective body for a just a little while. And that would have been possible if my dominant arm had not swollen up so much.
Gratitude: DH is putting in a beautiful garden for me (I am like Cin, would rather be out there pulling weeds, digging in the dirt, trimming bushes myself, but delegating and supervising is better than nothing!), my mom has been a tremendous help the last couple of weeks, andI feel loved by many.0 -
Cin, so good to hear from you. I'm sorry you're still in so much pain. Wish I could take it away from you for a while.
Elaine, good to hear from you too. I hope you and Cin can get together soon.
Love you guys.0 -
I'm going to copy/paste my post from the high prolactin levels thread.....
28 minutes ago MarilynL577 wrote:
I found out on May 6th that I have breast cancer. I do think the psychotropic drugs I've been on since age 12 caused it by increasing prolactin levels. I was on Lamictal & Celexa for MANY years, until almost 2 years ago when I went cold turkey off that crap. My mental state has improved since. I'm happier than I've ever been. Got cancer though. Things are moving so fast.... I go in on the 25th to see if it needs shrinking before the lumpectomy that's scheduled for the 29th as of now. I guess that may change if I need treatments beforehand. I'm kinda P.O.'d that they've known about psychotropics link to prolactin dependent cancer since at least 1999/2000 and fed them to me, free of charge, to treat mental illnesses that weren't even really there until they gave me drugs that cause actual mental problems (it was like a step ladder... Hereditary depression, manic-depressive, bipolar disorder, PTSD, borderline personality disorder with overlapping rapid cycling bipolar mania...) and gave me breast cancer! No wonder it's "so common" now when every little shift in a woman's mood, they're shoving a bottle of Effexor, Abilify, Zyprexa, Lamictal, Celexa, etc. down her throat, and saying you have to stay medicated the rest of your life, otherwise you'll kill yourself or someone else. I believed them! But how can that be true and at the same time it be true that I quit going to get their free death-pills and I have felt better than ever these last 2 years? I walked right into the mental-machine and jumped out of it with cancer. I don't trust the health care industry or the "harmaceuticals" and I think once I let them start "treatments" that I believe cause cancer, I'm walking into the cancer-machine and I will be walking *back* into it a few years from now to deal with the cancer I'll get from cancer treatment!
Okay, so there it is. I'm on the fence now about how to proceed. I mean, I don't trust 'em. Some of these doctors probably believe what they are saying, because that's what they were taught, most of them probably think they are telling you the truth...that *these* things must be done for your survival. In the back of my mind I don't believe them. I believe almost everyone has a little cancer somewhere and that the medical, pharm, FDA, CDC, politicos, scienctists, and all the elite-owned corporations and industries are well aware of the fact that they are killing us, but they are big and rich and powerful and they can hide things, pay ppl, falsify studies, etc., and do it so thoroughly that a lot of what scientists and doctors are taught is lies. They graduate and start regurgitating falsified statistics that they read in a government regulated text book and practicing these things on patients blindly believing that if some big important famous doctor said it and the government let it in the text book it *must* be true. Smh. Does anyone else here think like me? I'm sorry. I didn't read all 800-something comments before jumping in here. I believe they put carcinogenic stuff in our water, our meds, our food supply (restaurant & grocery), and are even trying to put it in our home gardens by genetically modifying produce. There *is* a depopulation agenda. They sterilize ppl with vaccines. They screen teens for mental illness at school so they can get them on a psych med. They make a fortune every hour by doing something to kill us off because "there isn't enough resources and room on Earth for all these useless ppl." Ask somebody in Montana if there's room for more ppl there and let's see what they say. Bill gates mentioned depopulation by vaccines and planned parenthood, the Georgia Guidestones says clearly, carved in stone, that the population needs to be culled to about 500,000,000 and says to leave room for nature and "be not a cancer on the Earth." I know some ppl don't want to hear it but Satan hates man, because man is allowed in heaven, but he isn't. The world belongs to him and there is evil and deception all around, the ultimate goal is for souls to be funneled into hell by deception if temptation doesn't work. You know some ppl who get cancer give up and get mad at God for letting them get cancer and Lucifer loves it because he's pulling them toward hell. It makes some ppl decide that they don't think there's a God at all. So that is why it is logical to me to believe that Satan has got his hands all over the cancer-machine. I know, I know. I just went off the deep end. I'll shut up now. I just don't know if I want to let them chemo and radiate me into more cancer or try something else... Either die happy or live life feeling weak and sick? Are those my choices?0 -
Hi Marilyn, I am sorry for your diagnosis. I don't own this thread, and I don't mean to chase you away, but we're out here to support our friend Cindy through her advanced stage cancer diagnosis.
Prior to posting more on this site, it would be helpful for you to please update your diagnosis data - what type of breast cancer are you suffering with? Are you stage IV with metastatic breast cancer?
There are many other threads you can post on, including a religious thread, a "why me" thread, etc.
Thanks for understanding!
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