Illinois ladies facing bc
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Oh so now I have learned something dreadful today. I start on AIs in a week. I'm dreading it because I've read all about the aches and pains ; I'm scared to death. Now you're saying depression is a SE, too!? I'm already on Zoloft which is the only one that works for me. I've tried all the others but they all gave me horrible chest pains and I had to go off. As it is, I can only tolerate a low 25 mg dose of Zoloft. I'm depressed about this already, so now I have more to look forward too? UGH. Also, my oncotype score was a horrible 40 so if I have to stay on longer that sounds dreadful. I know you're all saying you hurt, but can you at least function?
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My pain was worse in the beginning and now I have almost none. If there is anything to be scared of it's the cancer coming back and if this little pill helps to keep it away, I'm very grateful! Nothing to fear but fear itself! For me, I think it was a bit like menopause. When you first go through it you have all kinds of side effects from the low estrogen. But after a while your body adjusts to the low estrogen and you feel almost normal again. At least that's what happened to me.
Lago, I'm sorry you have to go through this. Depression is awful. I think emotional pain is worse than physical pain, many times. I hope meds help. When I first went on AI's I could not stop crying. But there were things going on in my life that triggered it and it was hard to tell what was causing it. In the end I went to an onco-psychiatrist. She thought it was the AI's, I guess they see it a lot. They told me there were only 3 anti depressants I could take, celexa, effexor or Lexopro. The others interfere with AI's. Lexopro never worked for me and effexor raises blood pressure so I can't take it. The celexa is another form of Lexopro and I've never tried it. But what I did (I'm not recommending this) was to take a vacation from the AI's to see what would happen. The crying stopped instantly. That alone made me feel better. It was a side effect, not me. I went back on and it wasn't as bad.
We're such a mix of biology and environment it seems it's almost impossible to say what is causing what. I'm actually on a blood pressure med that causes depression too. But I don't think I'm exactly depressed. My husband sent me to a top shrink because he thought i was. She said "you are not depressed. I hear nothing biochemically wrong. You have a lot of crap in your life. There is no happy pill. Excercize, it's nature's anti-depressant. Take a class, do what you love to do."
But that's just me. And that was before the diagnosis of endometrial cancer and the chemo that followed. Yes, lots of crap.
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JMG58-Don't get yourself all worked up over the AIs until you try them. I had more aches and pains on Femara, but I also have a lot of arthritis, so who knows for sure what is causing what? My onc said there are 4 we can try, I'm on a month long break and then onto #2-Aromasin. I don't think I have depression issues, but I do cry at the drop of a hat, but have been that way pretty much since diagnosis, and I got this really nice mascara at the Look Good Feel Better program, but it isn't waterproof, so the tears can be a bit of a problem LOL. Give them a try, you might not have any noticeable SEs, or mild ones that you can adjust to, but if they get too bad make sure you mention then to your onc. I work full time and manage that, the house-well that's another story, the way I look at it the dirt will still be there tomorrow
there are more important things in life than dusting!Have a great evening everyone! Tomorrow is Friday-yes!
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Ive been on for 9 months. Id say minimal enough se to say I have had none.
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jmg not everyone gets depression. My onc even feels it's not from the drug (don't get me started). Thing is if you are already on an anti-depressant you'll probably dodge this SE. Remember not everyone gets SE. I was fine for the longest time. I mean I was on the drug for 3 years. It was just the last 3 months that got to me.
Timbuktu I have been off it for 5.5weeks. Within 2 days I was fine, no depression, was sleepin g and back/neck pain gone. Saw the onc yesterday. Picked up the script for Exemestane (Aromasin). Didn't start today because I had to drive and it says "may cause dizziness" Maybe take tonight or tomorrow morning.
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Good luck Lago. I had the best results on name brand Arrimidex. I had to get a special prescription for it as the script costs over $1000. We just paid a few dollars.
I know what you mean about going off of it. It was as though the faucet was shut on my tears.
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Thanks, all, for the responses.. :-) Lago, I hope you feel better soon!
Timbuktu said,
"They told me there were only 3 anti depressants I could take, celexa, effexor or Lexopro. The others interfere with AI's." I'm glad you told me that! I will ask about my Zoloft! I certainly don't want anything to interfere! Gosh, it seems like there's so much stuff MO doesn't tell me that all of yours do. I'll be glad to go back to the Mayo in July and get more info from them since my doctor doesn't seem to volunteer much.
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Thanks jmg but I feel awesome now. Depression free for 5+ weeks. The shit may begin again soon. I start taking the drug tomorrow.
BTW I saw Adey today for lunch. She looks really awesome. Best she's ever looked since I met her. Granted we both had no hair when we met.
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Hair helps!
I'm on lamotrigine for my depression. Can't take the others, they either send me into a deeper depression or a blissful high. Yes, I'm weird. Lamotrigine not a typically considered drug for depression because it was initially used as an anti seizure med. It has not interacted with anything I've had from chemo to AIs.
Redhead, there is a recipe floating around, but I put in enough gin to cover the golden raisins until they've fully soaked it up. Some leave them uncovered to let the moisture evaporate for two weeks. I just pop them in the refrigerator. Take from 8-9 per day depending on size. I like gin and I like raisins, but I think the combination tastes pretty nasty.
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Whenever we defer happiness, we fail to recognize that happiness is a feeling we already have, that we can access at will. It is not contingent on outcomes. If you find yourself saying things like, "I’ll be happy when," you are missing out. Happiness happens whenever you tap into your own naturally healthy psychological functioning. You can be happy right here, right now, if you choose to do so.
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Goodness.....stopped in and encountered so much. We are all so different and medical ideas are just all over the place! I had no side effects on arimadex. I wanted to stay on it longer (I was actually on it for 6 years) but that was vetoed by the oncologist. My BC was very large (4cm) and not in lymph nodes. Now I am wondering if I should go back on the arimidex (my onc is retiring so it would be easy to get another opinion). I felt so confident on arimidex.
Good luck to all. Remember one thing...it is hard....but soooooooo many women have traevled on this thread for so many years and most all did fine and are doing just fine four, five, six, seven plus years later.
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Zap it's only 10 years for those who were on Tamoxifen for 2.5-5 years I think. But my onc who I saw Wednesday stated that it stands to reason if Tamoxifen for 10 or Tam/AI for 10 are better, then 10 years on AI should be better. It isn't standard care but it really looks like it will be (and my onc is going to want me to do the 10). My onc kept telling me my risk is high because of my 5.5cm tumor (also no nodes like you), high grade and it's ER/PR positive regardless of node status. She also said how high or low hormone positive doesn't matter (I'm ER30% PR5%). That doesn't make sense to me but she didn't get into any details.
I'm not sure I'll even be able to do the 5. Just started Exemestane this morning. Don't think my bones can handle it as well as other issues but we'll see.
So if you really want to go back on it I would ask. Maybe they would consider 5 years of Tamoxifen. Quote from Susan Love's site:
"Also, it is important to remember that the excitement about the aromatase inhibitors was based on data that showed they reduced the risk of a breast cancer recurrence. Yet, the most recently published data from the large trial that compared Arimidex with tamoxifen did not find a difference in overall survival after a median follow-up of 10 years. This suggests that, in the long run, the aromatase inhibitors might not be more effective than tamoxifen. Or, it could be that the aromatase inhibitors have to be taken for a longer period of time to see a survival benefit." source linky
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lago. -
So glad to hear that you had a get together with Adey!
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The only real failure in life is not to be true to the best one knows.
- The Buddha0 -
So sorry to be late with the quotes these past couple of days. Got some extra work this week. I will have another early day tomorrow, but home a bit earlier, and then back to my regular schedule.
So enjoying the summer so far -- not so much the storms, but winter this yr. was rough. It's nice to have warmth.
Blessings
Jackie
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My dear Jackie,
We are happy for these whenever they arrive.
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And Jackie....we are also happy that you got some extra work this past week! :-)
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I was kicking' myself after you left for not taking a pic. Especially since I looked so good!
Hugs to all.
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Lakegirl---did you get your 2nd treatment Friday? Hoping it went smoother than #1 and that you are doing good. Been thinking and praying that you had less drama this time.
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Adey I'm sure you look as good today as you did Thursday. Take a selfie. Granted I would have liked one of us but next time.
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((((((Adey)))))
Jackie
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A happy life consists not in the absence,
but in the mastery of hardships.
- Helen Keller0 -
Redheaded1..I was in the chair Friday. All went well...still feeling pretty good. Did have the headache last night from the steroids. I took a zofran...the headache makes me slightly nauseas, and zofran helps with sleep after the steroids. I have felt good all day, just praying there isn't a crash on my horizon!!! Thanks for prayers and good thoughts. I hope you are healing well, too!!!
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Affliction comes to us not to make us sad, but sober; not to make us sorry,
but wise; not to make us despondent, but by its darkness to refresh us,
as the night refreshes day; not to impoverish, but to enrich us, as the plough
enriches the field; to multiply our joy, as the seed, by planting, is multiplied a thousand-fold.
Henry Ward Beecher0 -
Good morning ladies -
Welcome to all of our new members - sorry you had to join us but this is an awesome group of ladies and a great place to find support! I hope everyone is doing well & enjoying our beautiful weather (albeit a bit chilly today).
I have a friend that is a physical therapist and lately she has been specializing in treating women who have been diagnosed with breast cancer. She brought the following information to my attention and I wanted to pass it along to you:
Currently, Medicare, and consequently many other policies, do not cover one of the critical components of lymphedema treatment, the medically necessary compression supplies used daily in lymphedema treatment. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
There is a Federal bill being proposed to change this.
The Lymphedema Treatment Act will improve coverage for the treatment of lymphedema by amending Medicare statute to allow for coverage of compression supplies used in the treatment of lymphedema.
Specific goals of the Act are as follows:
- to provide comprehensive lymphedema treatment coverage, according to current
medical treatment standards; - to enable patient self-treatment plan adherence by providing necessary medical supplies
for use at home, as prescribed for each patient (including gradient compression
garments, bandages, and other compression devices); - to reduce the total healthcare costs associated with this disease by decreasing the incidence of
complications, co-morbidities and disabilities resulting from this medical condition.
Go to Lyphedema Treatment Act to help support this bill.
0 - to provide comprehensive lymphedema treatment coverage, according to current
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Jenn that's awesome news. While I am too young to be covered by medicare some day I will be and as you now LE doesn't go away. I have not returned to PT in years, have no swelling or yet to have an infection. I feel a big part of why is because I wear my sleeve religiously every day and get new ones every 6 months. (Also exercise, not over-weight and also have some luck too).
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Jenn - thanks for the info. It took about 30 seconds to send the email to my congressman. I'm going to copy and paste your post on a couple of other LE threads to help spread the word. I too am a ways away from medicare, but this is an important issue since there are so many women suffering. Thanks again!
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What if happiness were found in the serenity of simple pleasures.
What if we didn't need the newest gizmo... the highest high?
What if happiness is in the air we breathe...
slowly, deeply, and consciously?
What if happiness is one fresh grape, savored with gratitude?
What if happiness is in our oneness with all creation?
What if happiness is about enjoying life exactly as it comes to us -
without chasing after it?
What if happiness is something we CHOOSE...
regardless of our circumstances?
- Jonathan Lockwood Huie0 -
Good morning.
Rita -- a wonderful milestone here. Pg. 1000 and 30,000 entries. All from one question in the dark early morning hours.....Is there anyone out there in Illinois who feels like I do right now....sort of alone and very much fearful. You have come so far and given us all here something special to hold onto and share with each other.
Thank you my beautiful friend. I'm so glad there is a you. You help make the world a nice place for others. So thank you from the bottom of my heart.
Blessings,
Jackie
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Good Morning.
Rita, I hope you noticed the wonderful milestone here. Pg. 1000 with 30,000 entries. All because in the early morning hours you reached out, wanting to know if there was anyone else out there feeling just like you. Sleepless in the dark and feeling just a little alone with some doubts and fears and wishing to have company.
You did a marvelous thing giving us all a place to come and call home......where help and understanding was only a few keystrokes away. I'm so glad there is a you. The world is a better place for so many because you reached out.
I hope you continue to do sooo well, right along with the rest of us. Thank you a million times over.
Blessings
Jackie
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