Illinois ladies facing bc
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MakMak: I'm fairly new to this forum but sure wish I'd found it at the point you're at right now. I know how much support I'd have gotten from everyone here. I just reached the two year mark since my dx which is big time good since my dx was IBC (inflammatory bc). It's a very aggressive type and less than 5% of the all bc's.Recurrence rate during first two years is 80-90% but drops to 40% after two years so I'm currently doing a happy dance. At dx I was a 59 year old widow with no children - just two spoiled cats. I am blessed to have my older sister, my youngest nephew and tons of friends and co-workers as my support group.
I, too, am an organizer as well as love research which is a good thing when you're fighting bc. I had actually dx myself before my first appt. with my pp due to the weird symptoms of IBC. I totally agree with everyone who suggested keeping notes, all of your test results and all insurance/bills from day one, and taking someone with you for a second set of ears. I will PM you all that I did as it's too much for here.
Definitely find a local LookGoodFeelBetter class. Huge amount of free cosmetics, help with drawing on eyebrows, covering dark circles, or red blotches, tying scarves and using hats. All instructors are licensed cosmetologists and have to be certified through ACS. Mine was also a nine year bc survivor & brought a box of her own wigs, scarves & hats for demo.
I had my hair cut very short, bleached out to a honey blond with some red (not auburn - primary red) streaks put in the top as my farewell to my hair. I lost my hair on day 16. I had my nephew shave my head. We had fun and he gave me a Mohawk before taking the rest off. I bought three wigs and hated them. Seems I have a fat head so they were tight and hot. I only wore them when it seemed socially required and the rest of the time I wore newsboy type of hats or scarves. For me the loss of hair wasn't a big deal for some reason. I've always had a simple cut & don't worry too much about it. I had friends and a cousin who were in tears for the loss so I guess it got appropriately grieved.
I would also suggest either maintaining a journal or a blog. I had a blog so I could keep my friends and family up to date and save calls and emails. I found it therapeutic to write and also could find humor in a lot of the stuff going on.
Lastly, I think you'll find that you will emotionally benefit from having chemo before any surgery. I had to have chemo to reduce the amount of cancer prior to surgery. Those months gave me time to come to terms with the bilat mx I had. Just my take on it.
I wish you the best as you start this journey you never signed up for. Keep us up to date on your progress. This sisterhood is different than any other but has more strength than you can imagine.
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OH MY! OH MY! It's a double whammy. Snowday and Earthquake. Kids have no school in Peotone. Did anyone feel the Quake. It woke me up. Hubby said it shook the house. He thought it was our furnace.
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Well gals...........at least there is no snow here but that hot sunshine has been eluding us! We've been golfing some great courses, shopping until we drop and sitting on the beach when it's not too cold. The locals in the area are freezing and complaining about this FL winter and we are having a ball!
Welcome MakMak and Marina. It sounds like the gals have already given you lots of good info.
WendyTY....glad you're getting back into the work routine and that the onc appointment went well. Thanks for standing in for me with the directory info!
I hope that everyone is getting around well in the snow. We'll be heading back that way on Saturday. I'll hate to leave the warmer climate but miss Dave and the cats. We have several things crammed into the last few days here. Today we're playing another golf course. It's supposed to be too cool for the beach.
Hugs to all of you!
Rita
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I felt the quake and I am in Elgin. I thougt a snow plow had run through my house. it was quite a jolt. Of course, instead of running to get in the door way....I ran around looking out windows to see what was going on. LOL So much for being safe!
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The most glorious moments in your life are not the so-called days of success, but rather those days when out of dejection and despair you feel rise in you a challenge to life, and the promise of future accomplishments.
-- Gustave Flaubert0 -
No earthquake here, but 14 inches of snow on the deck. Heading to the Rockies soon, so this snow is just a preview. DH wants to ski....hmmmm, do we remember the broken shoulder last year??? Actually he is a very good skier, and now gets the senior discount!
Rita, you chose an excellent time for your trip. Hope the airports are all cleared out in time for your return.
Carolyn, hoping the chest pain subsides, and you get a lot out of your second opinion appointment.
Laura, you are so right. You know how easy it is to obsess. Your new website sounds so interesting, and I bet the design will be fantastic! Your considerable talents are at work.
Marina, hope you are hanging in there. Thinking of you.
BJ, do you have a snow day? I'm getting ready to take off, and wondering why, when we have all this snow here.
Everyone, have a safe and great day.
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Good morning everyone. We did not get much more snow so no real accumulation. That is good for many here. Just the few inches we already had. We did go to Denny's yesterday and got a free Grand Slam breakfast -- oh heavens....I need to find a way to get those calories burned -- I'm sure it's too late though. Those waitresses were probably worn to a frazzle. At least ordering was not too much of a chore -- and the cooks had it fairly easy as well -- so our order came quite fast despite the STO the whole time we were there.
Glad that you spoke up Cagney -- I learned a bit more about you but mainly it is such good advice for Marina. I truly enjoyed my local Look Good - Feel Great. Due to trouble seeing I had quit using much make-up -- a little lipstick ( more so lips wouldn't chap ) and sometimes a little blush. I would urge anyone to go -- I think that was where I first found out the world does not come to an end if someone sees you without hair or anything on your head. I did not go without anyway -- I didn't have the "looks" for it even with make-up, but I think many, many women do have the "looks" and these classes will certainly help you make the most of it. I hope you will try it when the time comes.
Henson and Buddy -- I really do find it odd to still have concern after moving back home from the land of earthquakes -- southern California. Joked with friends before coming back about only having to watch for tornadoes now and then. Guess too....I would expect them in summer and not now --- but then it was always summer in California pretty much. Seems backward for them to come in winter. Hope everyone got through all right with no damages. Wendy did you get some of it?????
Carolyn -- here's hoping you get tons of information today in your second opinion and can be really clear about what you need to do for addressing all the issues you have. I think once you can get a fairly clear picture and plan things will be more tolerable -- the un-known and waiting are hard to take.
Smerf -- where is NB. I'm wracking my brain ( what little I have ) and uh - uh - uh nothing. If the horrid cold wind has not stopped that we had yesterday I'm packing up and going with you by the way -- that is why I need to know where we are going !!!!! I would imagine the Chicago area and surrounds almost always have the wind -- but we don't seem to have it too much. When we do the complaints are big time. It's bone-chilling when it comes.
Well, best get this day started -- second cup of coffee is now gone. Take care everyone and I hope you have a great day whatever you do. Stay warm. Rita really is a bum, isn't she ?
Warm hugs, Jackie
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So I had my IUD removed on Monday, and guess what I got this morning!! Haven't had that visitor in over a year with having a baby... Question: I am getting my bone scan and breast MRI today and CT Scan and MUGA tomorrow. Does anyone know if there are issues with having one's monthlies and those tests? I'll leave a message with the nurse but it takes them a day to return calls!!!
Thanks,
Marina
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No quake here in Northern IL.
Do any of your home insurance policies cover quake damage?
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HI Jackie,
NB is Northbrook, which is the next town north of Glenview. Susan had said that the snow had stopped at her house , and she is in Northbrook, but it was still snowing furiously here, so I was ready to make a very short move!
Marina, good idea to check at your facility. At Skokie Hospital where I went, you must have a day in between a muga and a bone scan. You can't schedule them back to back because of the contrast material. You can have all of them with a period though. Oftentimes they will just make a note of it for the reading doctor. Also, you may not be having a true period, but some irritation from having had the IUD removed. And what type of CT scan are you having? With or without contrast?
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Hi all,
I totally felt the earthquake this am--- completely jolted me out of bed. The house absolutely shuttered and there was an audible boom. I sat for a good 10 minutes, straining to hear if there was a plow, or a train. Just silence. And then wondered if I had dreamed it. So, when I heard the report on the radio this am, I started yelling at the radio-- AHA! It was real!! It was small, but i have never experienced one before and found it very eerie!
But--regarding MRI during your period. Mine landed on the date of my (6 month) MRI checkup and just to be cautionary, I called my surgeon's nurse and asked if it was okay to proceed. She urged me to reschedule, indicating that yes, your period can result in additional false positives. It might be different if they are just trying to get a close look at something they know is there, or establish a baseline-- not certain. In any case, probably best to get your surgeon's or ordering doc's point of view on it.
-julie b
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Julie - I'm "shocked" (lol) you felt it way up north here!
Connie - More info please...what was ds's science project about...just curious? Good job DS...way to go!
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Well, just came back from my Bone and MRI scans.. and already had the call that my bone scan is clean.. at least FINALLY some good news this week!! Went to see my make-up girl to learn to make eye-brows (did get a stencil just in case) and she gave me a bottle of 'Synergy" Kombucha. Do any of you know if this is a good idea to drink during chemo? The bottle actually said it started out when their mother was battling breast cancer!! Looks like I'll be on taxotere/carboplatin with a shot of neupogen/neulasta the following day. Laura, I will ask my Dr about the home shots so I don't have to go twice.. and also make sure I need it first per Julie's suggestion... Thanks everyone... I am so so glad I found this forum!!
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A big congrats on the clean bone scan. That is SO good! Don't know anything about "Synergy" product, but I would ask onc if it's okay with him. You need to keep well hydrated, but usually water is best for that, if you can drink it. I had trouble with water starting with second tx, and switched to lemon Crystal Light. Many of us gain weight during chemo, and I did not want too many calories in my drinks. The steroids can really give you the munchies, and carbs soothe the stomach.
The Neulasta shots can cause some se's, but they do an important job of keeping your white count up so that you don't have to delay a tx. Getting all your scheduled txs on time means you are getting the optimum from them, but it would be nice to get them at home. My onc gave me mine at the end of each tx, so I never had to come back. Also, you need to know if your insurance will allow the at home route. Some people have told me their's would not, and Neulasta is very expensive.
I'm off to the mountains tomorrow. I can't believe I'm going where there is even more snow....
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Oh Smerf, how much fun. I would love to go to Denver to be with a dh who skis while I sit by a grand fire reading a wonderfuk book. Have fun, my dear!
I am now working too much and will be more careful about future assignments. I love the kids and the teachers, but I miss time alone. I needed to do this to realize just how much I miss time alone. I need a balance. How cool for me I have the opportunity to tweek my schedule so I have both. I now understand, Black Jack, your struggle with fullltime vs part time. The money means only so much! Time is precious.
On another note, I was dead asleep when the earthquake happened. I would have loved to be able to say I heard, felt it.
I had to renew my driver's license. I was aksed if I wanted to donate my organs. I told the woman I had had BC and thought my organs would not be acceptable. She shared with me that she was a one year survivor herslef. We talked for about ten minutes. Funny how it is every where!
Have a wonderful Thursday!
Susan
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We didn't feel the earthquake, but we did hear it. It was loud enough to wake us up and make us wonder what the heck the big noise was. Hopefully, that was our earthquake quota for a very long time!
Marina - I see that you've already gotten a lot of great advice from the wise ladies here. I went to the same place smerf recommended in Skokie, Jerome Krause, for my wig. I went right before starting chemo so they could see my natural hair and match it - and they did, right down to having individual highlights hand-sewn in. It was pricey, but my insurance (bcbs ppo) covered the entire amount. I was shocked, but very grateful. I wore the wig to work every day and it was pretty much indistinguishable from my natural hair. Once I came home, the wig came off and I'd wear one of my comfortable head scarves. At bedtime, I had a really soft and warm "cap" that kept the cueball warm. It gets cold up there otherwise!
I have bangs, so the eyebrows weren't too obvious a loss, and they fell in waves, so there were always enough stragglers that it was easy to fill in the rest with a few strokes of an eye-pencil. Same with the eyelashes, although I'd bought false eyelashes, I never did use them. I found that wearing eye-liner worked well enough. The eyelashes are a funny thing - for me, they didn't fall out until right after my last chemo tx. Then they came back very fast (within days), then they fell out again. There were several cycles of this until they finally came back to stay.
Laura - Your website sounds great. Can't wait to see it.
Speaking of supplements, I decided to up my D3 intake. Right now I take a Calcium/Vit. D combo that I bought from GNC. Considering I'm about to start Zometa infusions, it seems clear that my supplements just aren't able to keep up with what I'm losing due to the Femara. I was looking at Osco and saw a combo Omega 2 (fish oil) and D3 gel tab on sale. I almost bought it, but I thougth I'd research the fish oil first since I've never taken it. I know it's for heart health (which is good since my dad had very early heart disease) but what kind of side-effects can it cause? Does anyone here have any experience with it?
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Hi All! I went for my 2nd opinion at Rush. I was very happy with the results. All the doctors and residents,fellows,etc.were very thorough, professional and down to earth. They answered all my questions - most before I asked them. I had some special concerns. They were addressed and I feel comfortable that they won't be a problem or if they do they've had experience handling them.
They didn''t feel a 2nd mass so they want to do a 2nd MRI. If that comes back clean I can still have a lumpectomy.
The only news I didn't like hearing is that my previous 3.9 cm mass is know about 6 cm.
All in all, it was a good experience, I'm going to continue on with Rush and I am extremely hopeful that everything will be alright.
Hope everyone has a wonderful day!
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Mak Yeah for the good news
Smerf Have lots and lots of fun
Zap your retired remember!!
Have a great day gals. We can take omega3 right?????
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Butterflies are self propelled flowers. ~R.H. Heinlein
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Marina - Great news that the bone scan is clean! When is your Node Biopsy?
I LOVE KOMBUCHA! Jewel was out of the plain one, so I bought the Green version of it. Haven't tried it yet...but I'm sure it will be good. Have you tried it? And...it's a good idea to ask your Onc about any supplements you're taking.
Carolyn - Glad your appts went well. Sounds like you'll be very comfortable and confident with your team of Drs. I can't remember...did you have any nodes tested?
Irene - I haven't had any probs w/fish oil. I think the Omega 3 is better than Omega 2...hope others chime in.
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For what it's worth, daily, I take:
6000 IU's - D3
2400 mg - Fish Oil-Omega 3
1 tablet Super B Complex (don't know mg's)
500 mg - Magnesium
(and Iodoral and an inhibitor)
Calcium - stopped taking it until I can determine if it's being absorbed-still researching it
Am also researching i3C - an alternative to Tamoxifen
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Urgent question to all!!! I went for a second opinion for breast surgery and she recommended i get the sentinal node biopsy BEFORE my chemo.. and that's tomorrow... Now the other surgeon who did my biopsy called and said to consider NOT doing it because if it's positive now she will need to do a node disection, but if it's shrunk and negative AFTER chemo then she won't even have to do that and spare me the risks of lymphedema... However the surgeon doing my biopsy tomorrow said she highly recommends it as she would otherwise not know and not take out the nodes.. which this surgeon says is not necessary if I am clean at the time of surgery... HELP!! Need to decide in next 2 hrs!!!
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Morning....cold out there but the sun is nice...
Oh MakMak....I don't know what to tell you! I had lumpectomy, sent. node bx and then chemo, rads etc! I am trying to think fast and unfortunately both docs have a good idea. So I am so sorry...I don't have any thoughts! And something to remember...the risk of lymphedema comes with ANY disruption of the lymph nodes, even one node out! Sure..the risk is smaller but it happens. So...I wouldn't count that into my decision. But then...that's MY opinion, for ME! Maybe have the sentinal done and then do chemo and see where you are at that point?? But once again....I think this is what I would do. Me. Not you. Such a hard decision, and no time to make it! Do you have a primary doc you could call and ask? What about calling your onc and posing the question? Now those 2 things...I would recommend right now!
So...I will post this to you and then come back and chat more!
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Back again...
MakMak...I too did taxotere/carbo with Herceptin. I did really well. I had to have the neulasta inj's the day after chemo and my ins. co. required so much paperwork for home injecting that I didn't bother. I don't work outside the home and the onc is only 15 min away so I just went. They did a CBC to check my counts before every chemo so they would know. My onc, and a lot of them do recommend this, told me to take claritin (the plain kind, not the decong.) the day of neulasta and for 3 days afterwards to help alleviate bone pain which does happen quite often with the neulasta. They think the bone pain is more of an allergic reaction so the claritin helps. I did not get any bone pain, but then I took the claritin. Also, ask to have the neulasta given in your belly. I got it once in my arm and the stiffness and bruising was terrible. Got the tip here on BCO for the belly injection, and the nurse was fine with that and no more pain. Had to have procrit inj's twice when my counts went way down but I refused the last one...and my onc was fine with that too. The procrit gave me flu-like symptoms and I was down and out for a few days after each injection of this stuff...even chemo didn't do that! Only se's I had from Herceptin were peely nails and a drippy nose. I didn't lose all my brows/lashes at once either. They held on for me too until after chemo and then I lost most, but not all. Brows came back quickly and stayed...the lashes came and went 4 times over the next year. If you do a bit more eyeline, you can't tell! I got all my wigs from wigs.com - I lovede having different styles, altho they were all the same color. One thing I wish I did tho was get my hair cut into one of those really cute short, sassy, sexy styles - you know, the one you ALWAYS wanted to try...just to see how it would look.
Susan...I don't think we can donate organs now, correct?
Laura...still no Vit D results yet. I take Omega 3-6-9 from Nordic Naturals, which I order from Amazon.com. Smerf told me all about these...her doc specially stocks them for her...so I figured this would be a good one. They're lemon-flavored so no fishy smell.taste.
Carolyn....so glad you are happy with your team. I would be a bit upset that the tumor has grown that rapidly, or did they just miscalculate??? Let us know how things continue, ok?
Jackie...we only got about 4-5 inches or so of snow...not much out here. And yes, we have fault lines out here W of Chicago but the quake from yesterday was a new fault line they discovered and lucky me, only about 12 miles from here! I did wake up....the bed was really shaking! But I went downstairs and looked out the window, and watched all the lights go on in all the houses. Didn't see anything, so I went back to bed and back to sleep.
Gotta scoot for right now...take care all...and MakMak, good luck with any and all decisions. Just wish you were so pressed for time on this!
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Mac One of the gynes in my office is doing that. chemo first becuse her career will be over if she gets lymphedema. I has the snb. this will effect the amount of chemo you get. if it was in my nodes I was going to get 8 treatments if it was not i would only get 6. I do have severe lymphedema now, but not on the snb side. I have it on the main cancer side where they took 22 out. Its a tuff decision you willl have to make. You can pull this info up here and research it. Good luck
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Marina - Geesh... you are pulled in so many directions. If it was me, I would have the Sent Node tested. And figure it out from then. JMO, since node involvement can also create vascular involvement, I would make it a priority. My Sent Node was positive, but a subsequent Ax Node dissection showed no further involvement. And, if the Sent Node IS positive, it may determine your treatment, up front. I feel so bad that you are racing against the clock here - sure doesn't help the ol'stress factor. Hang in there. Best wishes with your decision.
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I am typing this at the computer guest room at Wickstrom Ford in Barrington! Too funny...it's great they have all these computers here for people getting their cars serviced.
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Sorry but I am so disgusted...WE NEED A CURE. It's awful so many girls are dealing with this CRAP! Sorry...I can control my anger MOST of the time, but occassionally just can't hold back! Am I asking too much...is a cure too much to frickin' ask for!
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OK.. almost thought my baby had a fever.. had to deal with that too.. I am going to do it... I agree that I'd rather know then not know and wish I had it done before chemo.. and if comes back clean then I'll have something else to be thrilled about!! Thanks for the advice.. off to CT scan and MUGA...
Marina
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Mak Good for you. I would have made the same decision. At least this way they can be treating you as aggressivley as they think they need to. So glad your baby is ok. I wish I lived closer so I could help you out. Hang in there and stay tuff. You will be one of us soon, Answering other peoples questions. Love Buddy
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Yes, I would never be able to determine the best way to go, Marina. I guess you have to trust the doctor you decide to deal with. What a situation to be placed in! I give you credit for moving forward.
Wendy, we cannot donate organs. I felt so sad when I wanted to donate blood and could not as I have a history of cancer. It really hit me how "marred" I felt.
So much going on here! Whenever I start feeling sorry for myself, I realize that I got to 58 before this cancer started. That straightens me up right away. It truly is unfair.
Susan
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Hi ladies - sorry it took me so long to post! I didn't read all of the previous posts - although I saw Buddy's post about awaiting biopsy results so I had to find out - and I was so glad to hear that it came out okay!!
Surgery went fine - of course I got very sick as soon as I woke up, but this time I knew what drug to ask for (I told everyone before surgery) - so they were able to stop my vomiting within just a few minutes. Path came back negative on my ovaries. Good!
I don't know if I'm experiencing any real menopause symptoms yet (?) I've heard it can happen rather quickly - but I'm weird to begin with (hot, cold, moody, haha) so who knows. I think I've been in a lifelong menopause!
Met with rad onco today - tx starts next week. They want to treat both the affected breast as well as the supraclavicle nodes - sigh. I just wish I didn't need rads - but I know it's probably the best way to fight the fight.
Back to work on Monday - BLLEEEECCH! Although I will be working 1/2 days throughout rads - I'm willing to be poor in order to not spend 8 hours a day at that place
thanks to everyone for thinking of me - you guys are all so sweet xoxo
Juliet
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