Illinois ladies facing bc
Comments
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Beata... let us know how your appt with PS went today. Sure hope the antibiotics kicked in and have you healing up fast so you can get rid of that darn drain. Don't be afraid to vent! That's what we are here for. Well, ONE of the things we are here for. Doxie.... third AC today? Hope the SE's go easy on you.
I will be interested to hear how you gals do with the Zometa. My bone density dropped dramatically after just 18 months on AI's. I am still weighing what I want to do. Are you being treated by your ONC or PCP? My ONC office said they would be happy to do the treatments, but not sure that is the right course to take. His PA is actually recommending that I go with Prolia rather than Zometa. For now, I am limiting my caffeine, upping my calcium intake, etc. Will have another DEXA later this year and make a decision then.
It is HOT, HOT, HOT! I have no where to be tomorrow and am looking forward to being able to stay home in the A/C all day. Not sure how we ever grew up without it!
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Joan888, Thanks for your thoughts, but let's send them to Graceembraced. She is having chemo today. My last was 6 months ago, so I'm not crazy about going into the chemo infusion area again. My MO is the one overseeing the Zometa. Prolia is a newer drug. It's good to have options if you have problems with one of them.
Make sure you take enough Vit D. I'm on 4000iu. 2000 wasn't enough over winter to get myself into the mid 60s. You need enough calcium, but getting it in food or small supplement doses is the best. There a lot of discussion in other forums on strokes and too much calcium from supplements. I'll send this then look for the forums.
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Clinical trials, research, etc. had a topic on high levels of Vit D prevent fractures. Also the Forum on Bone Health has two most recent topics on strokes linked to high doses of calcium.
I wish we could pop back and forth between forums and topics w/o losing what we've just written. Sorry if it's not totally clear.
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Ooops, sorry Doxie. Boy, do I need another get together to put all the new names with faces! So, Grace... Passing my thoughts on to you.
I take over 5000 units of D. I was on prescription Vit D shortly after chemo as my level went super low... 14! Then have been on high doses of over the counter Vit D for over a year and still cannot get it over 50. I am working hard on my calcium intake too. Then with back surgery coming up next Friday, my spine surgeon has me on a high quality multi-vitamin that i take 3 times a day and big doses of iron.... in addition to the pain killers. Geesh... So of course, that all leads to stool softeners..... Enough already! I feel like a full time pill popper.0 -
Joan888, you are well covered on the vitamins and minerals. I couldn't handle the thought of a MX, back surgury is beyond me. I'll be with you then. It's best you worry about the right vit and min balances after you are well healed.
Maybe it's time to get my doxie's photo up under my info.
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Again and again, the impossible problem is solved when we see that the problem is only a tough decision waiting to be made.
- Robert H. Schuller0 -
Hi all
Hope everyone had a happy & safe 4th of July!
As I type this, I'm in the recliner getting my very last TCH big bad chemo! I never thought this week would get here!
2 more weekly herceptins then switching to every 3 wks herceptin and starting rads in Aug. this group is so wonderful and supportive. Even though I've been pretty quiet on this board, I very often read the caring and support you all give to each other.
Thank you all so much and i hope you all have great weekends!
diane0 -
Hope everyone is staying out of the heat! I just thought I would share my news with you. The genetic testing came out negative......no genetic links were found to my bilateral BC..... so as discussed, we are happy for that but just what caused me to get this thing???? That is the question. Is it just bad luck???? Hopefully that is the end of my bad luck days!
So now I know it was right to proceed with the radiation therapy on my lumpectomy side and I don't have to worry as much about ovarian cancer. I can keep on taking that tamoxifen and lower my stress levels and keep myself healthy and all will be OK. Why am I still worrying?????
OK....enough of venting and worrying. On the positive side, my right side extender has now been extended out past my left side (poor saggy old girl) and I'm having to wear padding on my left side to make my clothes appear even, lol. I have two more fills to go. I guess my PS is one of those that likes cleavage and it going to give me some major ta-tas, lol. The lumpectomy and re-excision has left the old girl kind of empty and more saggy than before. I just have to last until September when hopefully he will match them up again!
Diane.....Yeah for last chemo! Time for a happy dance! Wiggle, wiggle, wiggle, wiggle,.....Let's dance!
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Diane.....a wonderful milestone. Great news. Its great to have things you can do about the ugly C, but getting to the finish line knowing you hung in there is such a positive feeling. One of the biggest sighs of relief you can have. Yay for you.
Valerie -- great news for you too. As to why you got cancer........we all wonder about that one. That can be found on the unanswerable side of the page. No one has been able to come up with an answer. I think if you blink your eyes too many times in one day you will be a lot more likely to get it.....but seriously.....people follow the book and get it while people who do everything wrong so to speak don't get that or even a lot of other things that we KNOW darn well are possible.
You will worry less as you get more time under your belt. You will relax again and have very positive expectations come up......and you will laugh again and do it all without one little thought of cancer. It only has so much momentum to consume you --- you will get life back and like most of the rest of us only start to feel apprehensive a bit when it comes time to get testing done.
Rain it turning up in the forecast here for the week-end.....I can't believe I'm saying this....but oh, happy day.
I'll see you all after work tomorrow --- sometime after 11 a.m.
Hugs, Jackie
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Nanc512 - Just wanted to pop in and mention that I did Zometa 3 times, and for the same indication - my dexa numbers dropped like a rock after being on AI's. I went from firmly in the normal zone to osteopenia bordering on osteoporosis. I had a lot of concerns as well, and in fact, skipped my 2nd scheduled infusion, but after talking to my MO and having him explain the various studies and which ones applied to me very thoroughly, I proceeded with 2 more infusions.
I did read that it helped to reduce SE's if you were well-hydrated so I drank quite a bit of water before I got to my appointment, and had a large ice tea that I sipped on throughout the infusion. I asked the nurse to please run it as slow as possible - which she told me was their protocol anyway, as well as running it with an extra bag of fluid. Good thing I was put in a room with a bathroom right next door because I think I made at least 2 bathroom runs with my IV pole during that half hour!
I did my infusions on Fridays, just in case I needed the weekend to deal with any SE's. As far as side-effects, I did experience some flu-like aches and felt feverish after my 1st infusion, but none of that happened until the following day. I basically laid on the couch, took ibuprofen and slept off and on all day. By the next day, I was a little lethargic, but was still fine enough to attend a family party. I was perfectly fine the day of the actual infusion. Importantly - I had no SE's at all after my 2nd and 3rd time, even though I fully expected to wake up the next day feeling crappy like I did after the first one. Thankfully, I was perfectly fine both times.
Now that I'm done with all my treatments and AI's, it was suggested that I continue with Reclast once a year. I'll have my next dexa in October and decide what to do based on that. After having the Zometa treatments, my dexa numbers improved slightly, but mosty they just held steady. I was just glad they didn't continue to plummet.
Good luck to you whatever you decide.
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Good morning ladies! AC number 3 DONE! One more AC, then on to Taxol/herceptin! Chemo day, Thursday Was good, just tired with no sleep. One of the meds meds mess with my sleep. I get 4 hours, then wide awake and usually can't nap during the day. This is usually my pattern for the four days after chemo, but no nausea. OC gave me sleeping pills, so I might try them every few days, thank goodness I don't work Friday, Saturday or Sunday, so I can recoup. Thanks for the well wishes.
OC looked at my left side and underarm, I can't tell if it's swollen, scar tissue or lymphdema. Thankfully he doesn't think lymphdema, but said he feels a chord and scar tissue and recommended going to physical therapy to get working on the chord.
Has anyone had experience with a chord...I don't know what that is, a ligament? Muscle?
Has anyone used a LE therapist in the Western Springs area (were I work) or south suburbs (we're I live). I heard there is one in Lockport and one in Palos.
Valerie I too was BRCA negative and joyful that my daughter and son did not have to be tested. I never said why me, more like why not me, cancer is a random, hateful disease, that can effect anyone at anytime. But we have the faith and technology and meds to fight it and win! Stay strong and positive, cancer hates when we are confident that we will win! Praying for you.0 -
Today's Inspirational Quote:
"The willingness to forgive is a sign of spiritual and
emotional maturity. It is one of the great virtues to which we
all should aspire. Imagine a world filled with individuals
willing both to apologize and to accept an apology. Is there
any problem that could not be solved among people who
possessed the humility and largeness of spirit and soul to do
either -- or both -- when needed?"
-- Gordon B. Hinckley0 -
Hello, Illinois folks--
I am in Champaign, Illinois. I was just diagnosed last month: IDC, 2cm, Grade 2, ER+, PR+, Her2-, 1/1 nodes.
After a biopsy and re-biopsy, I met with 2 oncologists -- one SO not a match for me and the other quite wonderful. I am now trying to decide whether to do chemo (leaning toward a yes, although the predicted benefit is only 4% difference in recurrence over 10 years.) I am also considering whether to participate in a clinical trial (AC/T vs TC). The amount of information gets overwhelming!
My surgeon had scheduled an axillary dissection and port insertion for yesterday, but after meeting oncologist #2, I cancelled the dissection (she said it's not necessary) and the port (since I wasn't 100% sure about doing chemo). I decided not to rush myself. I only met with the oncologist this Tuesday and decided I could really take a few more days to decide what to do.
So I'm busy reading, then thinking, then totally distracting myself for a while and just letting my brain hum in the background.
I think it will be a big relief to have a plan!
Virginia
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Hi Virginia.....
I'm glad you found us. Sorry for the reason as always but a good many of us have been hanging around here since 2007 or so.
You do have a lot of information to "think" over until you make a decision. I personally wanted to do everything I could from the get-go. It is possible for some ( if they are ok with it ) to skip chemo and many do. I started out not needing chemo but after my lumpectomy.....the diagnosis changed enough that it became a necessity. I had already decided to do whatever I could though so there was not much of a decision on my part.
It will be a relief to have a plan......and to get on with it. There is a lot of life to be lived and this sort of puts some of that life on hold. You will gets lots of help, understanding and great information here. I hope you will keep coming back. It is a great group of ladies here.
So a big welcome to you.
Hugs, Jackie
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Thanks, IllinoisLady!
I appreciate the welcome. I feel like this boards will be a big help to me, and I hope I can also help others.
Virginia
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Hi fellow Illinois girls....I am from Gurnee and just posted a topic called Horrible Anxiety. I will re-post it here to see if any of my "neighbors" who are going through treatments or finished them have any advise for me.
I think the steroids are giving me very bad panic attacks that last for days. It is very scary and uncontrollable. I need to do two more rounds of TCH to make it through my treatment. Any suggestions?
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seLori62....hi to you. It sounds like you need to get with your Oncologist and get something for this anxiety. I did not have that problem but others have and hopefully ( it is a quiet time right now here, but should pick up soon enough ) will chime in and let you know how they handled it.
So much is known about se's now and I think you can find something to alleviate almost all of them, all of the time. You just have to let your nurse or the Oncologist know how troublesome it is and ask that you be given something for the anxiety.
I am wishing you well and do check back as others will come on......maybe not until tomorrow, but they will be here and more than willing to give you a hand.
Take care
Hugs, Jackie
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virginia, welcome. You will find these IL gals very supportive, informative and helpful. I am close to you as I am in Danville. Take your time making these decisions. They're big ones and you need to feel comfortable with what's about to go on with your body. Hugs
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seLori62- I had to take extra steriods due to an allergic reaction. It was so bad I took Benadryl simultaneously. The B slowed me down enough to not go completely nuts, but my moods cycled up and down constantly throughout the day.
I second what IllinoisLady said, see your MO. Your MO could lower the dosage if you are doing well handling the chemo. In the meantime in additional to trying Benadryl, you could sip on camomile tea all day or, if you are well enough, burn up some energy with exercise, clean house, or go shopping (I'd go to Target and the grocery store and buy enough to survive a month of blizzards.) Try anything that will redirect the agitation from the steroids by burning energy and/or that will relax you.
Hope something here will help.
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seLori -- I had horrible emotional reactions to the ups and downs of the steroids. Felt like superwoman for a day or two after the infusion, then the crash was awful....... days of anxiety and depression. I talked to my MO, and was put on a low dose antidepressant. It evened things out for me, I could function again. I echo what everyone else has said... talk to your MO to find a solution. For me personally, the side effects from the steroids were one of the worst parts of the treatment.
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SeLori - maybe they can try to "ween" you off the steroids. My MO changed my premeds and after meds. I know take dexamethasone the day before chemo (orally), the day of chemo in the IV, and for three days after chemo. As the days progress I take less and less.
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stjude10--
Thanks for the welcome. It's good to see someone pretty local on here!
Virginia
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"On the mountains of truth you can never climb in vain: either you will reach a point higher up today, or you will be training your powers so that you will be able to climb higher tomorrow."
Friedrich Nietzsche0 -
Late getting here today. We are still awaiting our rain though it is a little cooler. Rain this evening and tomorrow as well. Can't wait. I hope you are all going to have a fantastic Sunday. Welcome again to you new gals.
Hugs, Jackie
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Thanks Ladies,
I did talk to my oncologist last week and she was considering lowering the oral steroid dose down a bit for the next round. It is a catch 22 because I know they are supposed to help reduce side effects, so what would I be in for then? Hmmmm....I just might give the Benadryl a try, it does make me very sleepy so maybe that would calm the system down a bit.
I had issues with my thyroid in the past (still do, but that's another story) and when it was swinging from hypo to hyper I was having the same anxiety issues. My doctor tried two different anti-depressants on me and I had bad reactions to both. So needless to say I would rather not throw gas on the fire right now. But I do appreciate every ones input and open for more if anyone else has anything to add.
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Hi Virginia....I'm not far away either........in Bloomington. I'm glad you posted. The decision-making process is so hard. Once you've got a plan of attack, you'll feel much more in control of your journey.
Jackie, we drove through some rain in your surrounding area last night as we passed through after taking our grandson back to connect with his parents. We had a great week together and had lots of fun. We are still awaiting the rain here. I heard them sound the warning to call in the golfers from the course about an hour ago, and got all excited, but nothing has evolved and now the sun is out again. We seemed to get missed when it comes to precipitation. Boo!
Welcome, SeLori!
YAY graceembr... three down and only one more in this series to go. You're on the downhill slide now, gal!
Hugs to everyone in treatment!
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Welcome to the new ladies-you've found an incredibly supportive spot.
Feels so comfortable today-glad that heat broke. Spent yesterday on a tall ship sail on Lake Michigan-wonderfully cool on the lake.
Hope everyone made the best of their weekend.0 -
Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding.
- Dorothy Thompson, 1893 - 19610 -
Haven't looked at the site in a while, I think I was subconsciously trying to pretend I never got cancer and so never needed to know this marvelous site exists. Kind of silly, I know, especially I had my first MO appointment last week and I'm still peeling steri-strips off my reconstruction incisions. When I got the IDC diagnosis my BS did a good job of warning me that chemo was the likely recommendation. I was really really hoping that she was merely quoting some "book" and that I would end up with just herceptin or tamoxifen or something with no real side effects. Apparently not. The MO said TCH and then whatever version of tamoxifen they give post-menopausals. All this is supposed to start right after the BS and PS release me next week. I have a second opinion scheduled just to make sure (and I really really really hope he doesn't say ACTH, I think I've accepted that it will be at least TCH). She said they have no good studies showing whether chemo is necessary for negative node patients and so they do the chemo route. Damn.
Anyone have a recommendation for a wigmaker in the near western Chicago suburbs? I can't go hairless at work and I don't have the panache to carry off a scarf.
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Hey Everybody! I have been reading posts daily but am very bad at actually writing one. Welcome to all the unlucky people that had to find us..
..you will be glad you did. I don't say this enough but I sure do appreciate each and every one of you. You all have something to teach me. Your warmth, kindness, experiences, laughs, and rants have helped me more than you know.
I continue to heal, am still dealing with the bilateral blood clots (which has really messed with my reconstruction) and won't know until later this week if I need chemo. I had a Mammaprint test done and my results should be in this week. Luckily this test does not come back with any 'gray area' results. I will have a clear answer and path of treatment.
I hope that everyone is on the alert for symptoms of blood clots. I wasn't and my treatment was delayed by weeks because I kept thinking it was muscle pain. As cancer patients we are all at high risk for blood clots (DVT - deep vein thromosis). There are plenty of studies that show that cancer (not just surgery) increases our risk. Just Google cancer & DVT or blood clots. You will be surprised.
I have been released and am free to travel for business once again. I have been grounded for so long I know the first few trips are going to be a grind but I am ready to go. Of course...I am taking you all with me.
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