No treatments for me.
Comments
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Ali, I tried tamoxifen twice and could not tolerate the SEs either. I quit taking it, but had lost trust in my MO and was unwilling to do ANYTHING she suggested, so I don't know if it would have made a difference in whether I progressed or not... in any case, I was so scared of starting an AI, but my new MO is so different, I trust her, and I was VERY surprised that I have had virtually NO SEs from Femara (letrozole). I seem to react so strongly to every medication my first MO prescribed that I had just about decided no more treatment at all, much like Cin. Cin and I were about the same stage when she first started this thread, she was just a little further along. By changing MO, agreeing to try a new approach, I have been much happier, feeling much better overall, and not quite ready to discontinue ALL treatments at this time. What I am trying to say is, maybe changing to an AI would be better than just stopping the tamoxifen. Tamoxifen made life not worth living, Femara allows me to be active and enjoy life. But I know that a lot of women have major SEs on that as well, so other AIs might be better, you will find your response will be different from others. Best wishes.
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Linda, so tired and fed up with pain I need to feel normal so I will stop and smell the roses.
Hope your ok, what will be, will be.
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Ali have you been taking pain killers and such to alieviate any of the SE of the AI's? I too have had a he** of a time with the AI's and am trying to figure out some way to keep taking something. Good luck to you.
Hugs Ginger
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Firstcall, was in the marathon i hope he's safe.
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Have spoken to family and they want me to continue with Tamoxifen. Have left a message with my Onco to call me and tell me what else i can take.
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Ali, have you actually TRIED any of the aromatase inhibitors? They are only an option if you are post-menopausal. Just looking at your stage and receptor status, you really may be at high risk for recurrence if you don't do anything - I thought I would beat the odds and not take the tamoxifen - after all, I reasoned, only 60% of women who take the tamoxifen have no recurrence, but it turns out that is false reasoning. You need to look at YOUR cancer, and think about what YOU can do to prevent recurrence. Recurrence and progression is a little tougher than preventing it IF you can find a drug that you can tolerate. For me, Femara has been MUCH more tolerable than the tamoxifen, other women on other AIs (Aromasin, etc.) have had good and not-so good quality of life, it just depends on your individual physiology. Even though your family wants you on the drug, I think it is not the specific drug they want, but rather they want you around for a long time, and want you to do whatever you can to make that happen. So I hope your onc can find something to help you out and get you a better quality of life. (((((Ali)))))
Sending my morning greetings to all here supporting Cin and Elaine. May we all feel loved, may we all have a moment of beauty and a moment of joy today, and may we all experience many moments of peace.
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I'm pre men so they won't change the drug. They said take anti depressants for hot flushes and evening primrose. Have started taking it at night so i can get some sleep.
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OK, Ali - I got it. You are in a really tough place. Some have gotten relief from Effexor (venlafaxine) but it is really tough to come off of once you are on it. I also know that most of the antidepressants (including Effexor) may interact with tamoxifen and reduce effectiveness. I hope you can work with your doc and pharmacist to help you get some better quality of life.
I am going to have a very busy day, so am cruising through to give my love to Cin, Elaine, and all the rest of you. May you have many moments without pain today, may you have many moments of love.
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Hi everyone, Cindy especially. Wishing you all peace and love today.
Ali, so sorry you're suffering SEs from Tamoxifen. Me too. I started it on 1 Jan last and though the number of hot flushes has reduced when i get them they're terrible. Other stuff too, lately I've become very depressed - can't see the light kinda thing - and then some days feeling silly, tearful and happy, don't know where I am and weight gradually increasing too. I don't know what to do about stopping but the decision is so much harder for you as your stage is so much more serious than mine. Also I am post meno at 60. My onco has asked me to stick with it until next June and we'll review it but I know she'll say just try another 6 months - and on it will go from 6 months to another 6 months. I feel I went along with the radio and am now very stiff on the left side though I do my exercises a lot but it just stiffens up again and I thought I had sailed through it. It's affected my breathing at night too so with my good prognosis and at almost 60, I know if it wasnt for family I def wouldn't take the Tamox any more - but I know I'd have a better argument than you because of dx. I just wrote this by way of sympathy with you and your SEs. It's a hard decision for you either way.
Linda, loved your piece about gratitude - not always easy for me.
((hugs)) Lorna
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I take Effexor and have come off of it once. I am on 150 now for hot flashes. WHen I came off of it very very slowly, over a few months and it was no problem. There is no reason to try to come off of it quickly. If you go slow, really slow, you will have no problem. I find it did away with the hot flashes quite nicely.
I think on the page about Ai's there is a list of which anti depressants work with the AI's.
Good luck to you
Ginger
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No, most anti-d's are effective with Tamox.
Ali, that drug almost ended my life. I dropped it after 18 months and haven't looked back. I am actually taking estrogen right now, as the Tam. permanently decreased my estrogen intake. There are worse things than dying. One is WISHING you were dead. Psychiatric drugs were powerless to overcome what Tam did to me.
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Doing my morning cruise through here to give greetings to Cin, Elaine, and all. Keeping you all in my heart, hoping for no/minimal pain, and many moments of peace and love today.
Athena, it's not that the antidepressants aren't effective with tamoxifen, it is that they are metabolized by the same pathways and there can be interference with the effectiveness of the tamoxifen with some of them. And I had similar experience to yours with the effexor! Ugh! And I so agree with you that there are worse things than dying!
Today I have promised myself a "fun day." I am limiting BCO to checking in only this once today, then off to paint, draw, do an art project with the 2 little girls from next door who are home-schooled and enjoy the occasional art project I can find for them. I taught at university level and had forgotten just how much fun the little ones are!
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Hi Cindy, would love to see a family pic of u all with baby.
Hope your in a good place and if not take more of what u should.
Love to everyone xx0 -
Good for your linda, I am up steroids from chemo it is 320am, will take benedryl and take a nap, lol
Cin agree with Ali would love to see a pix!!
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Linda - yes, that's what I was referring to. Fortunately, the problem is only with one or two SSRIs (Effexor is an SNRI).
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Greetings to all today. Hoping Cin is resting, pain controlled, finding moments of love and joy with the new little one.
And wishing you all a peaceful evening.
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Awfully quiet here .... hoping you are all doing well, and sending you my love.
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I am passing through to give my Love to Cindy, Elaine & all the wonderful, supportive women here.
Such love here......
♥
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Hello all ..:)
Sorry i have not been checking in... i was a little angry after my appointement with the surgeon..
It , was.. nothing...
they just couldnt see the clip in the left breast... so needed to do another mammo...
I so wished they told me that ahead of time
Fears a bitch... getting tired of playing her game.
Surgery , (lumpectomy on both ) is the 30th... so for now i just concentrating on excersizing, and getting back in shape... spring is taking its time to bloom, and i am impatient to see the flowers once again...
I hope you can smell the flowers were u are Cindy..
Be well all,
love
celine
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Had ultrasound on pelvis and lump is normal. Have thickening of the lining of uterus of 6.3 mm not sure what that means.I will have to see a gynecologist also i haven't had a period for a year.
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Hello all,
Love to Cindy, Elaine and everyone. Hope you're having good times with 'babygirl' Cindy.
Great news that the lump was normal Ali. I know tamox causes thickening of the lining of the uterus and they say a certain amount is acceptable-not sure how much though. Better to see your gyne anyway.
love to all
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Greetings to Cin, Elaine, and family. Keeping you all in my heart.
Ali, sorry you have to add more appointments to your calendar, hope you have minimal delays and anxiety from all the fuss. Keeping you and your daughter and your family in my heart.
Celine, I really understand your frustration about not being warned about some of these things. I went for what I thought was just a CT scan last week, was told it was to be with contrast medium, and I have had problems with that in the past, so ended up wasting 3 hours of my time to go over there, wait, and then drive home, all for nothing.
Valjean, nice to see you buzz through.
Ginger, Lorna, Athena, Blondie, and anyone else I have omitted, you are also all in my heart.
Off to see the MO tomorrow. I'm sure we will have a little discussion regarding the previously-mentioned CT scan, but I talked with my counselor about it, and she reminded me that I am making decisions that are consistent with my values, that I have been consistent all through this journey, and that when I agreed to treatment that was not consistent with my values I have regretted it, but when I have refused according to my values, I have been at peace. I need to convey that to my new MO in a positive, non-emotional way. She has been very good about things so far, so I want to keep a good relationship with her, but there are just some boundaries that I cannot/will not compromise on.0 -
checking in hope everyone is well!!!
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Thinking of Cin, Elaine, and all who love and support them.
MO appointment today went smoothly, she was very much OK with no CT for now, will consider PET/CT maybe later if needed. For now, following clinically by changes in the recurrent nodules. But she doesn't think surgery will help with the pain I have developed in my right arm for a number of reasons, but agrees I should see the BS anyway just to make sure. She says the tumor is deeper than what I thought, and that it may have invaded the actual nerves, so surgery won't help and might even make things worse with scarring around it. *sigh*
Not what I wanted to hear.My DH is tilling up a little garden patch for me to plant some flowers and bushes in. I am trying to surround myself with beauty as best I can, and I can think of few things more beautiful than a garden full of flowers and foliage, providing shelter to my birds, a feast for my eyes, and rest for my soul.
Sending lovingkindess as always.
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Hi all,
Prayers to Cindy, Elaine and family.
Hi Linda, we recently did a garden re-design -the full shilling! as we say over here and we are delighted with it. As you say there is nothing nicer than a garden to look out upon. My best friend passed away last year-the dreaded cancer!! and after her death at only 54 and remembering all the plans we had as a foursome as her DH and mine are also best friends, we decided that if we have the money for some improvment we want in our house we're going to do it. Why wait and save our money when that rainy day may never come?
I hope your arm pain improves and am sorry that they don't recommend surgery for you but if it could make it worse then you don't want to take that chance i guess.
Always thinking about you good ladies>>>
lorna
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Hi Cindy, hope all is well with the family. X
Linda, sorry you have pain and worry but every day is a blessing. I have decided to walk an hour a day, stop drinking and tidy the garden. I was going to have it landscaped before i got my dog so glad i didn't, she digs everywhere. I love walking in fields and seeing flowers. Have been doing some pots with flowers and got a containers which is filled with seeds. So you shake the seeds on the ground and wait for them to grow - 6 wks. watch this space to see if it works, i keep looking but nothing yet.
DD is doing better but doesn't seem to gain weight but stays the same. DH and i are going away this weekend on our own so grandma will look after the youngest. I didn't want to go and leave them as i worry about the eating with my daughter.
My GP called and said i will have to see a doctor about my "Thickening" normal is 4mm mine is 6.3mm. Is this what life is going to be like -bloody doctors all the time.
Love to everyone, forgot to say going to Yoga tonight ahhh.
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Hello all,
Just changed my avatar photo. It made me happy when I saw the lovely field of sunflowers. Hope you all enjoy it too.
lorna
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Linda hang in there hugs
ah have fun alli
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Lorna, I LOVE sunflowers!!!! Sunflowers and marigolds are my absolute favorites!!!!!
Thanks all for the support. I don't know why there is so much stress in just making the phone calls and getting the appointments scheduled, that seems to take half a day a week, then the appointments themselves take a full day a week. Geez, I am beginning to really hate this, and I had almost gotten to the point of being able to relax and accept the diagnosis, just trying to get on with my life. These medical appointments seem to rob me of that time and opportunity. Getting ready to make some art today.
Thinking of Cin, Elaine, Ali, and all the rest of you. Peace.
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Sunflowers are so regal....i loved working with them.
hope you all are well... im just trying to kill time before surgery on tuesday..
ive started a dragon boat racing team... raise money for cansupport... they have helped me so much. I even got interviewed for a health magazine today...
"the purple happy button team! spreading purple happy joy where ever they go!"
be well
love
celine
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