Calling all TNs
Comments
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Teka, I will miss you until you come back. Yes, please do consider coming back. I have enjoyed talking to you. You are a part of this amazing group of women.
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Mags20487 - thanks for asking about my thyroid situation. While I am waiting for the doc's office to call me about my authorization for a second biopsy, I received my report from the first biopsy. The report pretty much says that the test was inconclusive, however, there is one sentence which worries me a little "The specimen contains watery colloid and scattered clusters of bland follicular epithelium showing varying degrees of oncocytic change." What does Oncocytic change mean? Does it have anythiing to do with - as in oncology?" WTF? On a good note it says "features of classic papillary carcinoma are not identified'.
Somehow I am very calm and uncaring, not sure where this attitude is coming from.
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Dormac - ha! ha! ha! ha! That was very funny, when you said that you wished you had missed all the posts about chocolate cake. I am sorry, I was the culprit who started talking about cake. In my defense, I must say that I got that word "Cake" from someone else's post. Is it possible that we could get an eating disorder by being on this forum? I know when I read about food and deserts, my imagination gets very strong, at least 10 pounds strong.
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Teka - don't go anywhere please. You are so important on here and give such bloody good advice I would be lost without you. Please stay. I won't ever mention the f.... royals again, promise. Annie
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Oh hell, I think it was me who started the discussion on the chocky cake as well.
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Teka, please stay. I left for a while but it's lonely with no one who understands.
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Kathrynn - nah girl. I love reputations they make a person and as you say you may already have one. Tell us about it please. No poker face on this chick. I have terrible trouble trying to keep the grin off mine when I read your posts. Annie
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I'm having my surgery today! I don't know if this sounds weird or not, but I'm looking forward to this step in my breast cancer journey. To me it gets me one step closer to being back to "normal". I loving coming to this forum. You guys make me laugh and there is great advice.
Have a great day everyone!
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Lisadi1963 - Good luck with your surgery. Your going to be just fine, its just a little blip in life. Glad you like being with us its good to laugh. Thinking of you and sending hugs. Annie
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I was diagonised with triple negative on the 19th April I started my 1st chemo TC on last Tuesday 29th May which takes 7 hours to get I sffer terrible with hot flushes over the last 3 years and still do only now a little worse I am new to this site and find it great I live in Ireland Co Tipperary I am getting my treatment done in Limerick I am having 6 seesions of chemo once every 3 weeks and get Nuestrla Injection 24/48 hours after my chemo then I am having a Masetomy on my right breast also 35 seesions of Radium would any of ye have advice on getting a double Masetomy as they found a lump on my left breast but it is benign I am considering in asking can I have it done I know I cant have a reconstruction at the moment maybe down the road but when my surgeon said that I know thats a no the tumour is 6cm and very aggresive
Good day to you all god bless Caroline I am 40 years old0 -
Hi everyone! Just a quick check-in to say we are home from our trip, and I still have lots of stories to tell. My intention to post on my blog every day was valiant, but we were on the go from morning to midnight every single day, so I fell behind after about the second day! I'll have time to write more now that we are home. And I'll eventually have time to go back and read everything I missed here (which is a lot!).
I hope everyone is doing well and enjoying every day!
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Melissa-I felt the same way. I cried more about loosing my hair than my boobs. Now I am the reverse I worry more about my boobs since my hair is back. Trust me it will all come together again. But no worries you hair will come back in most cases better. Nothing like fresh undamaged hair. Start making up a game plan to get yourself through treatment. Target has so many cute scarves experiment and try on some new lip glosses. The point of the post is that you will get through this. So many before you and I have.
Another note I was overweight so I focused on my weight while in Tx. So it took the focus off my hair. My thoughts were while my hair is coming back I want my weight to disappear. (((HUGS)))
I vote for freedom of speech ladies. A smile and hug to us all.
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Welcome back Luv! So glad you had a good time!
Had another 4 month appt. with the BS yesterday. She is recommending one more left side 6 month mammo in Oct., then I can go to every year if all looks good! I have mixed feelings. I like the thought of not having to do it as often, but scared of what can happen in the course of a year.
Fighter- any suggestions on the weight loss thing? I am trying to lose about 15 pounds to get down to 130. It is mostly in my tummy-I am tired of the "muffin top"!!
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Melissa - Welcome, I'm glad you found us. This is a great place to come for advice and support. We even have some laughs, too. I had dose dense (every 2 weeks) chemo....AC x 4 and then Taxol x 4. I found Taxol to be much easier than AC...I think most but not all of us did. Somebody upstream had a good idea about switching the order, if your doc is OK with it and it works better with your schedule. I didn't have a port and my veins held up fine. Chemo isn't a picnic, but it's definitely do-able, and you will come through with flying colors.
Cocker Spaniel - you MUST keep posting here, because I depend on your posts for my daily laugh
Heather - I hope your first day at the new job went well.
Have a good day everyone!
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Melissa - I forgot to mention the hair loss. Yeah, that was tough....I cried when it happened....but then I got used to it very quickly. I guess I was so focused on getting through the treatments that the hair didn't seem so important. This may sound nuts, but sometimes I appreciated being bald....it got me out of the house a lot faster
If you think you'll want to wear a wig, buy it before you lose your hair, so you have it when you need it. And keep in mind that it's just temporary.....your hair will grow back. Wishing you good luck with your treatment.0 -
Morning Ladies, hope you are all well and enjoying your days so far.
Riley - I was put on Taxotere... not given option for Taxol..but then my health care insurance has covered everything...not sure if protocol is different here in Canada ?!
And Annie... thanks for just making me smile !
Luv... glad you had a blast in Gay Paris.
Good luck with the surgery Lisa.
We have a rainfall warning here in the 'sunny' Okanagan, BC - hope you are all enjoying better weather than this.
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OMG - this board moves fast, go away for a day and you're catching up on pages of posts! But it's all good, sharing our hopes, fears, news, opinions in this community.
Melissa: Welcome. It would be worth asking about doing taxol first; there may be some benefit in efficacy (I've read the same study) and you'd probably be feeling better over the summer.
Caroline: Welcome, sorry you have to be here, but you'll get lots of support from the wonderful women here. I'm sorry I can't give any advice re double Mx, but there will probably be someone along shortly. Have you had genetic testing? In the end, you'll have to decide what's right for you based on the best information you have at hand.
Weather has been poor here too - cool and rainy... after what was a super early spring and hot temps in early May.
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TifJ- I have had help along the way. Can't say it was an all natural process. I had liposuction, B-12 shots, and Metformin which caused a lot of weight loss in the beginning. Now I just walk like I am crazy and also I am a commuter where I live so that helps a lot too. It takes me out of the car and makes me move my body more.
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Thanks everyone for all of the answers to my questions! I think I am going to try IV and then I was told I could get the port if that did not work. Just since I had the DMX I really don't want to do another surgery just yet! My kids are 9 and 6 so I am hoping I will be able to at least enjoy some of the summer with them :-)....
Caroline. Regarding the DMX that is what I opted for. I had only one affected breast and was given the option of a lumpectomy since tumor was small but I felt that I needed to do everything possible to not have to go thru this again so I chose DMX. I did do tissue expanders. I need chemo but not radiation so I have been getting filled weekly. I would tell you that the anticipation of the surgery is def worse than the actual surgery and recovery. I was in surgery 6 hrs in recover at 7pm and home by 10am the next morning! I Two days later I went to my daughters softball game! There is some pain and discomfort but take the meds they give you and it is manageable. Don't know if that sways your decision at all but hope it helps!0 -
has anyone used something other than Adriomycin??? Epirubicin?? I'm looking for something with less cardiac risk since L side radiation is prob in my future as well. Thanks, Nance
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njprn- Many of us had Taxotere/Cytoxin instead of Adriamycin. They are both common protocol. Taxotere does come with many SEs too-I experienced just a few, but others had more. I think we all react a bit different to the same treatment. Best wishes to you!
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Thanks for the reply. I've had taxol already as part of a clinical trial combo with cisplatin and RAD001. Surgery next week with A/C in July. I want less cardiac risk but my onc isn't offering anything so I was wondering what others might have done.
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Only going back one week... ha ha - when you were all posting pics of your dogs - arh !! Here is Tucker, our neighbours dog who adopted us as well.
Finally I created a photobucket acct. and can now load pics here - I feel quite chuffed with myself (little things please little minds
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njprn: Epirubicin is an anthracyline drug that is considered somewhat milder on the heart. The FEC regime (Fluorouracil-Epirubincin-Cyclophosphamide) is routinely given in Canada and Europe (much more than AC). You may want to ask your onc if it's a better option for you. Do you have an existing heart issue? (because I don't think L side rads is a big enough factor to sway this - many of us here have done AC and L side rads). Patients are usually tested for their heart function before such drugs are given (and afterwards).
Also, often with smaller tumours and no lymph node involvement, oncs will prescibe TC (taxol and cyclophosphamide) so you avoid the anthracycline drug altogether.
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Melissa, many at my center do IV. I had a port and if you decide to go that way, it is a very easy, quick surgery. You will enjoy the summer with your kids! I have an 11 yr old and just made it through end of school activities, recitals, shopping for camp, etc. Some on the heels of a tx. Plan and pace yourself. Like Babs said, line up some help for those lower energy / fatigue times. Those days will pass and you will have many good days between treatments. Be careful in the sun as chemo makes our skin sensitive.
Caroline, I chose BMX after pondering many things...my age (45), family history of breast and ovarian cancer, higher chance of reoccurrence, how much I would worry about the "good" side. Your BS should be able to give you an idea of your reoccurrence % vs the average person based on your personal history. They have some statistical modeling for it, although it is only a model. In the end it is a very personal decision and there is no crystal ball. Good luck!
Fighter, I have been focusing on weight loss too. We lose so many things we want to keep during this process, it is nice to lose something we don't want! Plus shopping theraphy has been more fun since I fit into a smaller size. 0 -
Thank you Luah. I read your posts and appreciate your insight. I do not have a diagnosed heart condition (and want to keep it that way!) I often read what is going on in Canada and Europe and like what you are offered. My onc wouldn't consider it when I asked about Epirubicin. Her response was "that's not our protocol". From what I could tell from research is the patent had been held for a long time on Epi meaning it was greatly more expensive than A (22x more) so drs here didn't give it because ins wouldn't cover it. You can get it now but I can't seem to find a reason why it isn't offered more other than the A/C protocol has been the standard. If there is the potential for a better offering I'm frustrated why it isn't tried, esp if requested. Navigating this journey is daunting! This sight and advice from those like yourself is comforting.... thanks
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An 80-year old man was having his annual check-up and the doctor asked him how he was feeling. "I've never been better!" he boasted. "I've got an eighteen year old bride who's pregnant and having my child! What do you think about that?"
The doctor considered this for a moment, then said, "Let me tell you a story. I knew a guy who was an avid hunter. He never missed a season. But one day, he went out in a bit of a hurry, and he accidentally grabbed his umbrella instead of his gun." The doctor continued, "So he was in the woods, and suddenly a grizzly bear appeared in front of him! He raised up his umbrella, pointed it at the bear and squeezed the handle. And do you know what happened?" the doctor queried. Dumbfounded, the old man replied, "No." The doctor continued, "The bear dropped dead in front of him!" "That's impossible!" exclaimed the old man. "Someone else must have shot that bear."
"That's kind of what I'm getting at," replied the doctor~
Like · · about an hour ago near Waterford ·0 -
Goog afternoon Ladies,
Well it took a few hours to get through all the great conversations I have missed. I just love this lively group and the varied subjects we talk about. Just like life, a little something for everyone!
My thoughts are with Jenn. I find myself thinking about Laurajane, Suze and MBJ so much these days. I suspect they are making their presence known to halp me get through this last part of the dreaded Haleven.
This has not been a fun ride and I have avoided posting because I don't want to be a downer and scare the newbies. With that said I have ONE MORE treatment on Friday and am ready to move on. From cancer, not the board. Had I mentioned I am still not completely healed from surgery on April 3rd? Not a big mood lifter. The Dr says ending chemo should speed that along.
I do try to stay caught up with the conversations and will try to participate more often as I truly miss you all so much. Thanks so much for the shout outs! I can feel the love and caring!
The best thing that happened to me lately: Ok, maybe not best, but Sunday a women congratulated me on my pregnancy. Now, I was not offended, but felt so badly for her. This chemo makes me really bloated and with out the girls you just can't hide an extended belly very well. I did turn to her and say: "Oh honey, that's just chemo bloat." Opened my sweater and pat my flat chest and said, "The Doctor told me once these babies are gone, things tend to stick out a little further."
Poor thing. She probably won't make that mistake again. I know I learned my lesson long ago and now wouldn't even say congrats if the baby was popping out right in front of me. I did tie my sweater around my waste for the remainder of the day to avoid another mishap.
Love to you all!
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Inmate - you are such a lovely woman, inside out. I admire you very much! I have so much learning to do, from you. Now instead of those film stars who are called "stars", you are in my book a "star". Courageous, strong, examplary!!!!!
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Njprn - I had the same concerns as you about radiation on the left side. I went to Dr. Jay Harris at Dana Farber - he is the absolute best in the area. He was able to do my radiation without hitting my heart or lungs, so you may want to consult with him. It means daily trips to Boston, but it's doable - I did it from 11/30 through 1/12 and lucked out with the weather. You wouldn't have to worry too much about that.
Inmate - good to hear from you and glad you are seeing the end of Halaven. Funny story about the pregnancy belly - yeah, she'll think twice the next time! Glad to see your sense of humor remains intact.
BernieEllen - LOL!
I got the call today from the specialty pharmacy. My Xeloda will appear next Tuesday, I see my MO on Wednesday and I assume I'll get started on Thursday. Hoping for the best!
TifJ - how's your new job going?
I brought home an unwanted souvenir from Paris - a headcold. I just took two Tylenol and two benadryl. Between the drugs and jet lag, it won't be long before I pass out!
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