No treatments for me.
Comments
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Marilyn, There's an alternative treatment thread where you can learn what some people are doing rather than the recommended treatments.
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Thinking of Cin, Elaine, and all the rest of the gang here. Know that I am keeping you all in my heart and prayers. May you be free from fear and pain, may you be filled with lovingkindness, may you be at peace.
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Folks, what is the latest word on Cindy? There haven't been posts from her family for some time.
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Scorchy if you look back a page you will find Elaine on May 10th and Cindy herself on May 12. Enjoy
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Just checking in today to send loving thoughts to all of you. Prayers especially for Cin and Elaine.
I am hanging in there, sometimes an hour at a time, sometimes a day at a time. But I continue to try to live in the moment of NOW, and found moments of joy yesterday despite my issues. We have frogs living in our pool - it hasn't been opened yet and is the most disgusting mess I have ever seen it in - lots of life evident in the green slime - and there are frogs that hop in and out of the water - last night we discovered they can actually climb up high on buildings - one was extremely loud right behind us, turns out it was tucked up on top of an outdoor speaker, hiding. There were at least 4 or 5 frogs talking back and forth, and boy, are they LOUD!!!!! I have always enjoyed frogs in ponds from a distance, but this racket less than 3 feet from me is incredible! I laughed out loud - DH has hated frogs for years, and I think he is taking secret joy in seeing even me, a frog-lover, get slightly exasperated at the noise!
Cin, if you are reading, I want to let you know I am planning a new garden. I am not able to do ANY of the work due to this miserable LE, but my 3 sisters and DH are helping next week to put in the plants I want. I have asked that it look good THIS year, don't want to put things in that will look good in a year or two as I may not see it then. So for now, plans are progressing, I am looking forward to it, and will be dedicating it to Cin and all of you on this thread. Peace.0 -
Linda I pray that your garden bring you great peace and joy but even more that you are here to plant your garden in the years to come with no pain or SE. I pray the same for all of us. The women here have taught me courage.
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Linda, I loved your story about the frogs and how your hubby is getting secret pleasure out of watching you fret! Too cute! I've heard some of that racket before when living by a pond in England, so I know exactly what you mean. It is sort of charming/annoying!! I love that your digging a garden and how wonderful to have helpers.
I just wanted you to know that when I get caught up in the madness of the world, your lesson about gratitude rings loudly in my ears and I stop and give thanks...
Cindy, I hope you check in soon and that you've been able to get up those stairs and into your comfy bed! I saw apple fritters today at Starbucks (good place to send Rick!!) and instantly thought of you, as I do whenever I see M&Ms.
Hugs to all of you!
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Thinking of you all today, wishing you peace and moments of beauty.
LE is a miserable experience, and feels like the straw that broke the camel's back, would love to give up about now, having lots of fear and little hope for anything better, but then I think of all of you here, as well as others who love me and who I love, so I am hanging on for just a little while longer, but am not making any promises beyond August to continue treatment. I have made promises to travel in June and July with family, but dread having to deal with my useless and cumbersome arm on the beach, in the warm sun. Trying so hard to feel joy and love and optimism for these family get-togethers, not succeeding right now. Have been feeling pressured to get some loose ends tied up, but this arm and hand make it difficult.
DH went with me yesterday to purchase plants for garden, they will be delivered on Wed, I will have help on Fri/Sat to put them in. My flower pots are beautiful red & yellow all around my pool, quite showy and give me great joy. Bluebirds nesting in 2 houses, already had one successful brood that fledged last week. Moments of grace, and I am grateful for them.
Cin, keeping you in my prayers.0 -
Linda so sorry it is so hard for you, thoughts, prayers and {{{{{{{{{{{{HUGS}}}}}}}}}}]]
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Linda,
The flowers sound divine. Surrounding yourself with beauty, helps in moments of hopelessness... but its not quite enough to cut the fear.. or the anger.
Sometimes i find myself lost in being... a bee. Floating from flower to flower, drunk with pollen, enticed by the flowers scent and beauty...
Your arm, heavy, cumbersome and distracting is a hard scarto bear... but from reading yourwords, your heart is strong.. and can bear more then your body can... let your heart take over.
I often imagine cindy, in her garden giggling withthe flowers.. no pain.. no scars..
I can imagine you, by your pool, cold drink in hand , laying back on areal nice chair... big stunningly gorgeous sun hat... big round glasses... and a big smile on your face.
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Celine, you made me smile! Thanks so much!!! Blessings to you, my friend.
I would like to imagine ALL of US, whole in body and spirit, watching the birds and bees and butterflies in the gardens, all of us sharing laughs and hugs. Much lovingkindness to you all.0 -
Hi ladies! Just flying through to say hi to everyone. Cin was on the boards and checked in over at the "flowers for cindyrose" thread, so let's keep up out encouragement! Hope she's up to posting something here real soon, would love an update.
Just a few weeks until hubby leaves for the Middle East, we're hoping to follow in late summer if I can get everything done, the checklist seems to grow by the day. Sigh. We'll get it all done, though, it seems to always work out in the end. Gotta keep the family together, that is job #1!
Love and peace to all of you wonderful ladies! xoxo
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Thank you Gingerbrew! Thanks so much.
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Hi Cindy, how you doing? Have you been in your garden enjoying the sun. Miss you honey, sending you light and love.
Linda, sending you hugs and warm sunshine. Xx0 -
Stopping by to wish all my sisters here a good morning and moments of peace today. Always keeping Cin and Elaine in my heart, as well as all the rest of you.
Yesterday was a day full of love for me. My siblings put in a beautiful new garden for me - I was not able to get in and prune and yank out weeds due to this miserable LE, but they were so great to put things where I wanted them, watered them in, and we celebrated with a bottle of champagne last night. I am so grateful for them, and hope I have more moments like those- they keep me going when i would like to quit. I am blessed.0 -
Linda, how beautiful, thank you for sharing. A good reminder to all of us to celebrate the small moments in life, often they are are the most important! Your family sounds so loving and fun.
xoxo
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Hi all you good ladies
Checking in after being away for a while.
Praying for you cindy and elaine and all the family. Hope you are enjoying your garden these days and the little grandbaby.
Linda so sorry to read about your arm trouble, you sounded so down about it but I know you'll bounce up - you've got a strong heart-and a lovely garden now!!!. What trials you ladies go through, Ali too with the SEs. My heart goes out to all of you.
What a lovely post Celine...
I go to my onco end of this month and I think I'm going to stop the Tamoxifen, I'm sick of it after only 6 months. I thought of just not telling her and stopping it anyway as I don't want to be talked back into it or have any arguments but would that be misleading her do you think? Anyone have an opinion on that? I'd have to keep on getting the prescrptions and not filling them.
Any advice?
Thinking of you all. Even when I'm away and not accessing this thread, you are all in my heart.
Lorna
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Hi goodprognosis,
I just read your post, as I am a lurker on this thread. As your name suggests, you have a very good chance of beating this beast so that it never returns. If you are having se's from the tamox, perhaps your onc could switch you to femara. Since you are ER+/PR+, the best way to keep cancer from returning is to deplete the estrogen.
Of course, the final decision is yours, but I would discuss it with the onc first. No one can force you into a treatment that you do not want, however, the doctors want to keep you healthy as best as they know how. So, my advice is not to stop it on your own ... take it from a stage IV sister.
(((hugs)))
Diane
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I had a good prognosis similar to yours (1cm, stage one, grade one, low Ki67, hormone +, her2-, negative nodes). I decided to stop taking tamoxifen as well. Two years later, new primary in other breast.....higher grade, smaller tumor. Am taking tamoxifen now and hoping any SEs level out after body gets used to it. Would I have had the 2nd breast cancer if I had taken tamoxifen? Who knows...but I sure am taking it now!
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Linda how cool is that, they love you alot!!! contrats!!!
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Lorna, I echo that you should not stop tamox on your own, but be honest with your MO. I was so miserable on it that I did stop, told the MO, she wanted me on an AI, but I had lost trust in her and just opted out of any additional treatment that she suggested. Fast-forward after 2 more recurrences and now bone mets, I have changed MOs and am doing well on an AI (femara) and had to add Afinitor. Would I have had recurrence and progression even ON tamox? Who knows. My sister suspected I blame myself a lot for the progression, and she reminded me that so many women do everything they can, take all the most aggressive treatments and STILL progress, so I have tried to quit blaming myself and move on. You can't change the past, we don't know the future, so living for NOW is important, and your quality of life NOW is important to you, so you need to work with your MO to make that happen, If the MO is not interested in helping you, get another MO (it took me nearly 2 years to actually change MO - I didn't really trust the first one from the moment I met her, but was so scared by everything, just did mostly what I was told at the beginning, then got stronger in requiring that all treatments meet MY values and goals, not those of the "standard of care" folks. And also get a referral to a good palliative care specialist. My PCP and MO would not refer me, so I got a new PCP who is also palliative care specialist, and she is great!!!!
Have more to say, bandaged hand hindering me, so I will just send my thoughts of lovingkindess and peace to each of you today. Will check in again tomorrow.0 -
Thanks so much to Linda, diane, bluepearl for your thoughtful posts. I realised after I'd posted that this stage IV thread wasn't the one for me to be asking questions on, so sorry about that.
I appreciate you girls taking the time to give me a bit of advice, which I will have to think about now.
Linda, I think about your sore arm and how difficult it is for you and all I can do is send you loving thoughts and prayers that it will improve. Its a beautiful day here, hope the sun is shining where you are. The same good thoughts to all the others on this thread.
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Got my results and all clear.
Tamoxifen- i stopped but started again and have to say a lot better. It's 1 year now so maybe it just takes time. The hot flushes are down to one a day but still have pain in joints.
My head has cleared and i feel quite normal.
My arm is swelling up and have had to remove all rings from both hands. Still going to physio every week and that helps but my arm is getting fatter.
Seeing the surgeon on the 17th and will ask her if i need to see a specialist. I i have to be happy with the way i am, so at the moment i'm in a good place.0 -
Good to hear your results clear Ali and that's interesting about stopping and then starting the Tamox again. Maybe I need a rest from it. One of my biggest problems right now is terrible backache.
Sorry to hear you're having arm problems too.
Here's some ((((((hugs)))))))) for everyone here.
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Congrats Allie!!!
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Good to hear alie *flower pours drinks for all *
got my pathology back... all clear... no more surgery needed...onto rads
The evil little shit (my tumor) had only 25% live cancer.. so chemo killed most of it.
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Great news flower. Xx
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yay flower that is so exciting....
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Thank you Thank you Thank you. Finally people who are talking about the same things as I am.
My diagnoses has been late in comming, too late. For many reasons my PC was missed and the reasons dont change a thing. I have a badly eroded distal tibia thanks to a secondary without the sore ankle I would not know my situation. I also have what looks like shot gun attack across my lungs and they are still testing so see if there are any more lurkers.
I had my fist dissucsion with Onc last Friday and went on a high after watching my son and husband relax on hearing I could have treatment. Then I replayed the conversation and the words that jumped out were more about perhaps and maybe. The question of if my slightly wonky heart could cope. The part of me that can;t and wont cope is my mind.
I want some quality as I dont have the option of quantity. So I am planning ahead and in the mean time doing the bucket list.
I hope I cause no offense to anyone. I applaud the courage of everyone who gets the news we have had to face whatever they chose to do about it.
I get through with a lot of black humour my family support my choice if not my jokes.
hugs to all and once again Thank you.
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Hi Letselina, and welcome to our friend Cin's thread! We have some wonderful ladies out here, don't we?! Thank you for sharing your story and I'm glad your family supports your choices. I've learned so much from the ladies out here, and now from you, as well.
Hugs to you!
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