Anyone starting Chemo in August 07?
Comments
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DeAnn--I go in to the cancer center for the Neupogen shots. They once muttered something about self-admin over a weekend, but that was never pursued.
My mom had to self-admin her blood thinner last week. She said it's a little funky, but doable.
Are you going to self-admin for sure?
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June - I've been trying to find something to help you, too...
I typed in "taxol bone pain" in the Search Community Knowledge Exchange field on the top on the right (underneath the main search) and came up with some things from the board:
Someone was prescribed 10 grams of l-glutamine powder 3 x day for 3 days after tx.
Someone else said the pain was worst between days 3 - 5.
Someone else said it was worse in the morning and moving around helped (but yours is worse in the evening, so that doesn't help)
Someone else said they changed the dosage and it's more manageable now.
I am so sorry you're having this... hopefully it won't last long. Oh, someone else said that it didn't get any worse than it did the first treatment.
Good grief. I hope something helps.
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June,
Sorry to hear about your bone pain. I thought I was experiencing it from neulasta shot. I guess it was the taxol tx, although I had # 2 on Wens and so far no pain. I hope you find a solution. However, try to remember that this is just for a few more treatments and if you need the relief you should take the medication that helps you. It's only temporary and try to keep that in your mind. You can stop the meds as soon as you're done. Keep telling yourself that. I just hate to hear that you are suffering because you're afraid to take the meds. And I am not a person who takes medication a lot, but I feel at this point in our lives we must take what relieves us. I hope I'm not sounding like a crazy person!!!
Lots of hugs, Jackie
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Hi all,
Havent been home , went to Hopkins yesterday to get my surgery date.
*******November 28th********
Final say is " Double modified radical mastectomy with double node removal"
Yuck!!
Glad to hear the winds are starting to calm and fires are slowing and coming under control. !!
I guess we all have issues with our neck of the woods but FIRES YIKES.
Glad to hear your all getting back on schedule with treatments and am praying for Nashes mom.
June - I have leg pain with my Taxol as well. If it helps the first time was the worst. Doc gave me oxycodone, i used it when necessary and the pain went away after about 3 or 4 days. Mine was worse in the evenings but has gotten better with each treatment.
Do I remember you guys talking about mouth sores?
Ive had a REALLY sore throat for the past 2 days and this morning woke up with white bumps all over the back of my throat and tongue.
Have yall dealt with this? What did you do?
Ive been kinda wiped out this time and not feeling well I figured it had to do with a cumulative effect this being my 5th treatment but now I wonder if I have a bug.
Hanging in there in Virginia
Kim
Edited - PS who had there surgery yesterday?
I know Someone did, PLEASE forgive my brain I can not remember who.
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HELLO LADIES! THIS IS ANGIE'S SISTER...MARIA. I APOLOGIZE FOR NOT POSTING SOONER. GREAT NEWS...ANG MADE IT THROUGH SURGERY QUITE SUCCESSFULLY AND THE PRELIM PATHOLOGY IN THE O.R. WAS THAT THE LYMPH NODES WERE NEGATIVE! I HAVEN'T BEEN UP TO SEE HER TODAY BUT WILL BE MAKING A TRIP LATER AND WILL POST AGAIN WHEN I GET BACK HOME IF I GET A CHANCE. SHE REALLY THINKS A LOT OF YOU ALL - I AM SO GLAD SHE HAS YOU AS A SUPPORT OF PEOPLE WHO HAVE "BEEN THERE DONE THAT" SHE HAS FOUND A GREAT DEAL OF STRENGTH IN YOUR EXPERIENCE SHARING. GOOD LUCK TO YOU ALL AND I WILL WRITE AGAIN LATER. THANKS AGAIN, MARIA
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Maria/Angie--excellent news! So glad to hear the surgery was a success and that Angie's nodes were negative! Please send her our best.
June--Hope you are hanging in there OK.
Kimmie--glad you have a surgery date, although it sounds sort of narly. Also sounds like you have thrush in your mouth. I'd call the doc--they can prescribe an anti-fungal mouthwash or lozenges for you. If it's thrush, it can go down the esophogus and be really bad, so get on it now before the weekend.
Hugs to all.
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Hi All,
Glad to hear that Angie's surgery went well, and we will hope and pray that the final pathology reports show negative nodes.
Just got home from TaxolHerceptin #3, but I had a terrible allergic reaction to the Herceptin, of all things. You hear about it with Taxol, but not the Herceptin. They started me out with Herceptin, and I was on for about 10 minutes. I got up to go the bathroom, and when I came back, I realized I was gasping for breath. As I sat there, I realized I could barely swallow, and my breathing was becoming worse. The nurses came running, and stopped my drip and handed be a barf bag. I started coughing and must have vomited about ten times before it started to subside. So, I only got half a Herceptin treatment, and we finished with the full Taxol. I had all the appropriate premeds, but I still had the reaction. I haven't heard of anybody having a reaction like that to Herceptin, have you?
Then, when I tried to schedule my Nuepogen shots, they told me I can't get them until day 5 and 6. Yet I was severly nuetropenic last time by day 3. Sigh. I have a call in to my onc and we'll see what she says. I do NOT want to go to the hospital again. No way, no how!
Kimmie, I'll mark my calendar to give you extra prayers and good vibes for your surgery day!
DeAnn -
Good grief, DeAnn! Does this mean you can't get any more Herceptin?
My mom had an allergic reaction at chemo to carboplatin, so I know how scary it is. I'm glad they got the reaction to stop.
Yes, neupogen isn't given until day 5. Remind me again why you're not getting neulasta?
I went in for my first neulasta today. Had been doing neupogen, but it's not enough, and they say I will be needing both drugs.
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Hi Ladies,
Kimmie, Nash is right - I hope you've called your onc by now, because white bumps could not only be thrush, but Strep Throat. Neither of which you want to deal with. Don't wait on this!!
DeAnn - Wow, I've never heard of a Herceptin reaction. How frightening - I'm so sorry. Did your onc have any suggestions for you instead of Herceptin? Also, I'm so afraid about you going into the weekend without any neulasta...my dh says (and he's a smart guy) just take your temp regularly and if it goes up at ALL, CALL THAT ONC IMMEDIATELY. I'll be praying for you, D. Sometimes we have to INSIST on what we know we need...my husband says that after I had my neutropenic episode he said very pointedly to my onc when she called him back: "So we'll be doing the Neulasta from now on, WON'T WE." She agreed. You might even need to remind her that you were low at day 3 before. Please be careful.
Nash - Well, I'm down here in SD, and I gotta tell ya, the air is better here than it is in the desert right now. The Santa Ana's stopped and started blowing from the west again - guess what's to the west? The Desert! So my home is suffocating, and I'm lovin it here in the ocean breezes.
You need both Neulasta and Neupogen? Wow, well, whatever works. I just hope it DOES work for you.
I will miss you Sunday, but I understand completely. There will be another day/another time.
Be safe, Ladies! Have a good healthy weekend!
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Glad you were able to come down, Kaye! I didn't even think about air quality up in the desert when the winds shifted. It's amazing how far all the ash and stuff can blow around.
I'm so bummed that I can't meet you guys for lunch, and especially to meet you in person. I was hoping to be able to force myself through this chemo round, but I feel sicker day 2 of chemo this round than rounds 1-3--I think I've hit that cumulative effect thing. Blech.
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Hi All,
Feeling pretty good tonight. The steroid are kicking into action, I think!
Nash, I'm not getting Nuelasta because I'm doing weekly Taxol/Herceptin, so you can't get Nuelasta with that as it is a long acting drug, and it can only be given if you have a two-week break. My onc said that it was very unusual for me to go Nuetropenic after my last session so quickly, and that it was probably the low point from my first Taxol chemo rather than the 2nd tx that did it. Since my numbers were higher this time around going into it, and I had the week break in between, I shouldn't crash so hard, and the Nuepogen shots should keep me from going Nuetropenic after round 4.
I am, however, watching my temp super closely and at even the slightest hint of a fever, I will head straight to the ER!
Yeah, the Herceptin thing was very weird, and they said it is very unlikely that I'll have the same reaction next time. I got through the first two rounds just fine, so just one of those weird things. They'll try me again next week and we'll hope it all goes well since I'm supposed to get a year of this stuff! Fortunately, I responded very fast once they took me off the drip and I didn't need any additional meds or the Epi-pen or anything. Probably my body just protesting because it didn't want to go through chemo again! "Hey wait! She's doing it to us again. Stop her!"
At any rate, I'm feeling good now and hoping it stays that way. Hope you all feel good through the weekend.
DeAnn -
Glad to hear you're feeling OK, DeAnn, and also very glad to hear that they think you'll be able to continue on the Herceptin. That's really important.
Absolutely keep an eye on the temp, for sure! That makes sense on the weekly Taxol with the neulasta. I'm sure the neupogen will do the trick for you--I've had good success with it.
Happy weekend, everyone!
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Hello Ladies,
It has been awhile since I last posted, alot has went on! I just wanted to ck in and see how everyone has been doing! Must of you should be seeing the end of treatment, I hope everyone is doing okay!
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Hi Cindy! Long time no see-written-posts!
How have you been???!!! I've wondered about how you're doing, I'm so glad you checked in!
Yep, a lot of us are done. Some of us are done with chemo altogether, some have started the last phase of chemo (Taxol) and some are in the process of moving on to rads (me).
How have things been going with you?
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Nash, you had asked why I was on Arimidex rather than Tamoxifen. I'll post the URL but you'll have to cut and paste it. (Unless dh wakes up from his nap - aaaahhh, vacations - and makes it "clickable" for me!..I need lessons. It CAN'T be that hard.)
If that doesn't work it's because I can't cut and paste on his laptop and I did it from memory (AAH HAAA HAAA HAAA HAAA! snort, HA HA HA!!! Hee Hee!)...Oops. That was the actual "LOL" you just witnessed.
If all else fails: The reason is because I'm post menopausal, and it works by suppressing the enzyme (called Aromatase) that converts some hormone produced by the adrenal gland to estrogen. It reduces the amount of estrogen circulating in the body. (I'm ER+ to tune of 100%) It's not for pre-menopausal women because their ovaries are still producing estrogen. (It's not for ER- gals either, as far as I can tell.) The thing i'm going to have to watch is osteoporosis (don't have a familial history to it) because Tamoxifen protects the bones, and Arimidex doesn't. But overall, regarding bc, it's supposed to work better for post menopausal women. The list of side effects are gnarley...but then - so is everything else I've done for the last six months!
There are a few of these Aromatase Inhibitors that are showing a lot of promise for us old bats. (You heard me, June!) so I'm encouraged that if I can't take it for some reason, there might be another one that I can.
PS from katoMato's dh: Nash, a handy Firefox add-on can be downloaded from https://addons.mozilla.org/en-US/firefox/addon/1419 Firefox has an IE rendering engine built into the program, and this add-on will allow you to switch your view back and forth from the Firefox view to an IE view. When in IE view, you will be able to use this sites cut & paste and add link features. I find it easier than the suggested edit of the Firefox program. That works also, but this way is actually easier. It has the added benefit of enabling some web pages that I'm sure you must have come across that still don't function well in the Firefox browser.
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Hey ladies. Angie here. I am home from the hospital and doing ok. My first coherent thought as i was in recovery from my bilateral mast was... "Hey, I can see when I am laying down now!" Such a treat. I am home on percocet and it seems to be working OK, although, I think it has been making me nauseous. So now I am taking it with my leftover compazine and no pukies after this last dose. Thank goodness. Well I just wanted to post quickly and let you know- so far, so good. The drains aren't as horrible as i thought they would be (yucky... but doable). And so far I am emotionally doing well with it. Although I have a feeling that first look will be hard. My boys aren't thrilled with all my current limitations, but we are all very glad I am home.
I will end here... my brain is handicapped by the pain meds and a lack of sleep. Love to all... Angie
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Welcome Home Angie!!!!!!
I'm so glad you're doing so well! (No pukies are good!)
Take it easy. And thank Marie again for us. It was great to hear how everything went - and congratulations on the no nodes. That's all great news!
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Hey June - how are you doing?
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Angie,
Welcome home. It was great to hear from you. Thanks to Maria for keeping us posted. You stay strong and keep taking your meds. Feel good.
Lots and lots of hugs, Jackie
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Girls,
I am experience the bone pain, which I thought was from neulasta, but I did not get neulasta this tx(#2) because my wbc was too high. My joints and bones, especially from my knee down(even my ankles) are really hurting. I even slept with my legs up on the couch Friday night. It's much worse at night. Is there any over the counter meds you can take for this? My liver enzymes are high so I don't know what to take or not take. Any suggestions? I appreciate it.
Hugs, Jackie
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Hey Everyone,
I'm alive/some better/ and a lot wiser (I think). The bone pain has gone...started almost exactly 48 hours after chemo and lasted five days exactly. After much much research on the web, I found that this happens to a large % of women taking Taxol.
Jackie: My pain was also worse in my knees and lower leg bones and it got really intense after 5p each day. Some things I did for relief: I took 50 mg. of Demerol when I couldn't stand it any longer. I also have Ambien sleeping tablets and they helped a lot. You CANNOT take a narcotic and sleep inducers or alcohol at the same time though, very dangerous. Will tell you one other thing that happened to me. On day 4 of the pain, my DH and I went out to an early dinner (about 4p) and he just insisted that I have a glass of wine. I have not had a drink since the first of June. I drank about half of my wine with dinner and was home in bed by 8p. Had no pain and slept until 4:30a. Now I know that alcohol is a muscle relaxant and I don't know for sure what happened, but I know if the bone pain comes back next week that I am going to try a half glass of wine. The next day was day 5 and the pain came back...alas, no wine in the house....but it was the final day of the pain. Hope you're better and by all means talk to your doc.
I have also done a lot of research this past week regarding neuropathy with Taxol. My onc seems? concerned that I'm having it this early and says that Neurontin is what she prescribes. This drug has dismal results for most of us and many se's. The web says a new drug called Lyrica is much much better. I also found that many BC sisters took L-Glutamine and B vitamins. My hands are pretty numb and I'm having difficulty opening things. My next chemo is Friday and of course my onc won't be there, so I will have to see what the NP has to say. Anyway ladies, I just wanted to share some information with you all.
Angie: So glad you're home and such good news! You're lighting the way for those of us behind you. Be extra extra good to yourself!
DeAnn: Okay Missy, I'm pulling out the 'big guns' and sending all back-up guardian angels to you! How scary...but so glad it was short lived and you're doing well.
Kaye: How wonderful that you and DH could spend some time in SD....even if it was sort of enforced, huh? "Old Bats"????......I beg to differ lovey :> In the south we're called 'Steel Magnolias' cause we're WISE...WILD...and WICKED!!!! LOL Want to join the club?
Nash: You're such a doll for trying to help me. You truly are our 'resident researcher' and go to person for info. Thanks so much for the web sites. Isn't it funny how we all seem to have a particular role on this board? You're our librarian, Kaye is our comedian, and I volley between the poster child for 'bitches' and the 'village idiot'. :>
Kimmie: How is the mouth? Did you get in touch with your doctor? I had thrush and it wasn't pretty but did get the antifungal med and it went to work right away. Please let us know how you're doing.
Well girls, when you have to have both a coffee break and a potty break to even finish reading my posts....then you know 'ole diarrhea of the fingers' has struck again.
love to you all,
June
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Hi,
I sure appreciate you all, Yes it is thrush, the oncol. prescribed 3 days of anti-fungal pills but today is day 3 and although its MUCH better its not gone. The white bumps are gone but my throat still hurts. I mean it hurts to eat bread!
Im a little baffled by all the talk of shots and blood counts. I get the jest of it all but I only have my counts done just before chemo. And they are fine. Have you always had counts done in between or was there something that caused your oncologist to monitor you more closely?
June thanks for the laugh (Village idiot) what a riot.
Deanne - How awful my stomach did a flip just reading about it.
You must be dreading the next chemo. even more than
usual. I be sending you good vibes and energy and crossing
my fingers for the best.
On the neruopathy subject. My right side is worst than the left and the thumb and first fingers are more numb than the rest, It started for me in cycle #2 of taxol. I pretty much just ignore it but it does make opening things harder.
Angie - WOW YOU GO!!!! sounds like your doing great and I couldnt be happier for you.You seem so positive it makes me fret a little less about my surgery coming up. If you have any words of wisdom please pass them on and continue to take good care of your self.
Take care all,
Hugs from Va
KIm
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Welcome home Angie!! I'm so glad to hear that you are back at home with your boys. Rest up, take it easy, and know that we are all thinking about you! I remember the first few days after my mast surgery passed by pretty quickly in kind of a haze, so I hope yours will pass by quickly too with as little pain as possible.
June, so glad to hear you are feeling better! I'm 48 hours post Taxol treatment, but so far, no pain or further reactions. I get out of breath super fast and my dogs swear that they are dragging me when I take them for a walk (OK, so maybe they are a little bit, but they're two big golden retrievers. I think they can handle it ), but I'm still moving at least.
Kimmie, I hope you've been able to get your mouth checked out. The white spots have me suspicious of strep throat. It's gone around my son's preschool for about six weeks now, so it is definitely the time of year for that sort of thing. Hope you are doing OK!
Jackie, bummer on the bone pain! I suppose if your liver enzymes are high the wine trick June suggested is out the window. Darn! Hope it resolves soon.
Hope everybody is doing well today. I'm going to go take a nap even though I just got up two hours ago!
DeAnn -
Hi Kimmie,
I guess we were posting at the same time! Glad to see that you did get it checked out and are getting the right meds for it. The mouth stuff is just no fun.When you can't really eat, it just makes everything seem worse.
Yeah, I'm a little nervous about next Friday and trying the Herceptin again, but we'll see what my doc has to say about it all. Hopefully, it was just a one-time odd reaction. Fingers crossed!
DeAnn -
Hi, girls, just a quick check-in, as I feel like I spent the night out drinking, then got run over by a truck.
Thank you to Kaye's Dh for the link--when my mind actually works, I will check it out!
Angie--so glad you're home!
June--glad the torture has stopped for now.
Kimmie--glad you got the anti-fungal stuff going. BTW, I get my blood checked weekly. It's just how my onc does things. As whacky as she is, at least she stays on top of the neupogenia.
DeAnn--cyber hug to you.
OK, I have to go lie down now. Kaye--have an extra nacho for me at Chevy's today. I'm so bummed not to be there.
Hugs to all.
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June and Jackie I also had bone pain with the Taxol. It started Sat p.m. (tx was Thurs) and didn't end until late Thurs night. The fatigue has been really bad as well. I'm not sure if it is from the Taxol or the fact that the bone pain kept me from sleeping much. I didn't take any pain meds because they make me nauseated and after 4 days of vomiting with my last a/c I just couldn't go there again. My lips were also numb for a week. I will definitely be trying the wine trick.
How much are you ladies working? I'm off treatment day and the day after (for me Thursday and Friday) but that's been it. It seems to be getting harder and harder with the fatigue. It's a walk to get from my car to my desk and some days I feel like I just can't make it.
Welcome home Angie...rest, rest, and then rest some more.
DeAnn I'll be praying for you Friday. I just can't imagine going through that and having to do it again. I loved your nap comment, that's how I feel all the time!
Take care everyone.
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Tami, I've also been wondering how much others are working. I'm off on treatment day which is Friday, and then I've been working from home on Mondays and then going into the office the other days of the week. It is definitely getting harder, and I think I'm going to have to work from home more often. I'm not as productive at home, but then, being in the hospital was not productive, and I think they'd rather have me working at home than not at all.
Oh, and as the queen of weird new side-effects, I now have a new one, everybody. I've had blood in my urine today. Anybody else run across that one? Rest assured, I did go to the ER today to make sure I didn't have a bladder infection. No sign of one yet. They'll do a culture, but at least I'm clean for now, no temp, no other pain. I am, however, starting to feel like I'm a bit decrepit! Honest, I'm really not falling totally apart, I just sound like it!
Oh, and Kaye, if you did have Nachos, I envy you. I've been doing my best to eat as healthy as I can and no dairy, but oh how I love nachos. I hope they were good!
Thanks to all for the good thoughts. Hugs back to each one of you!
DeAnn
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Hi All,
We finally got all the ash and soot cleaned up, and I just have to announce that my final chemo is tomorrow-yippee!!!! I'm so dreading it, but at least I'll be done. Then on to Tamoxifen. Just curious how all of your oncs. will be monitoring you. Tumor markers, scans??? These are my questions for her tomorrow. I've been working my butt off around the house the last couple days; now I won't feel so guilty when I can't get up off the couch this week.
Kaye-hope you had fun in our wonderful city. Wish I could've made the luncheon.
I ended up not going to my friend's memorial service up north, but I'll attend the one in Laguna where we grew up next weekend. I think all my tears that I've kept bottled up lately will be let loose as soon as I get there. It's going to be really hard.
For the record, 2007 had to be the worst year ever. Looking forward to 2008! Hang in there everybody. I'm going to do a little reading and try to sleep if the steroids will let me.
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DeAnn--did you call the onc today about the blood in your urine? How funky. Can't imagine what that would be from.
Eve--Congrats on the last chemo! That's so exciting! As far as monitoring goes, it appears that the standard these days is to NOT do scans in the absence of symptoms. And tumor markers vary by onc. Mine will be pulling them, although I don't know how often. It's every 3 weeks right now. I'll be interested in what your onc says.
My kids finally go back to school tomorrow. It's been a really long week with the fires and all. I agree--2007 blows!
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Yay to Eve! Congrats on your last chemo! I'm so glad to hear that you will be all done after today! I hope the side effects are minimal and that you start to feel like yourself very quickly!
Nash- glad to hear that school is back on and life starting to return to a little bit of normal. I haven't called my onc on the urine thing, because today all my symptoms are gone. It just lasted one day. How strange. Could be it was just stress and me trying to do too much this weekend. I cleaned out my front closet to find all the matching gloves and mittens in preparation for the oncoming winter chill, but maybe I overdid it. At any rate, I don't seem to have any symptoms today. Maybe my bath with tea tree oil fixed me?
Oh, and I heartily agree that 2007 has been probably one of the worst years ever. I should have known to go hide in a hole when I got in a car accident back on January 8th during a business trip to Ohio! Starting out the year with that was a seriously bad omen. Hopefully the year will end well for all of us though!
DeAnn
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