Is there a July 2011 group?
Comments
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Aletheai: I know that you were addressing kk11 with your questions. But I wanted to jump in an contribute. kk11 is the person on here that I have found is the closest to my treatment plan. She is two days ahead of me with the 4 AC, then 4 Taxol, if I am remembering everything correctly. I had just turned 40 at the time of diagnosis.
I have had the low body temperature most of the way through treatments and have commented on it here several times as well as to my doctor. They never seem concerned about it. I did read that it can be related to low rbc counts which I do have.
But also, I have been realizing that the reason I was unnerved by it was that I was getting such a constant change in hot to cold and finding that I was sweating a lot, like breaking a fever, but not much change on the thermometer. With the nauseous feelings, I was thinking that I was catching something. Now that I just started Taxol and don't have the nauseous feelings, the temperature changes have gotten worse, but I think what I am feeling have been hot flashes that have been really intense. I am finding this happening probably every hour and all through night.
My wbc's went up quite a bit, but my physician continued the Neulasta all the way through. Mine went up to 44 as I was fighting with what they thought was a UTI. The onco thought that the counts were just up from the shot, but then the doctors at the ER found what they thought was a positive result for a UTI, so that could have been the reason they were so high. If you have any sign of illness, I would bring it up, but other than that - I would take it as a compliment to your immune system that he is finding you don't need it. I don't know much on that one other than that.
Since we are on such similar treatments, it might help you to read back through these pages, skimming for kk11 and mine. Good luck with all this. It is a tough road, but this too shall pass. Find things to do each day that you can enjoy and not think about cancer too much.
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Misswin - Definetely I will pray for you. Keep positive
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I'll be thinking of you Misswim - you are a trooper!
Rabbit - so sorry to hear you have been so nauseated. Glad you are getting back in the swing of things.
I cannot stop thinking of eating, and following through with the eating. Here it is, 3 days post CHAIR number 3 and I am eating peanut butter and nutella on a cracker, topped with peach slices! Going out to dinner with the hubby and friends tonight, too.
I had my brain MRI today and the tech said she didn't see anything of note. Let's hope the Dr who reviews it comes to the same conclusion. I hope she saw a brain in there, but you never know. . . that might explain everything!
Everyone - have a great holiday weekend and duck as many SEs as possible.
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missswim: I'll be thinking of you and putting out good thoughts in your direction that all will be well. And I agree, it sucks to have to get through a long weekend first. I hope your meds relieve some of your understandable anxiety. For what it's worth my last reaction to Taxol also gave me incredibly severe lower and mid back pain -- it was just like being in labor. We pushed steroids and benedryl like mad and that helped. I feel for you.
Rabbit: I found the same things with sweet potatoes! How funny! Regular potatoes taste like glue. And dark chocolate tastes like metal. (Wait! did the earth's axis shift when I wrote that about dark chocolate?) I'm into vanilla these days. Vienna Finger cookies in particular. LOL And I still lost a pound this week. I'll probably gain 50 pounds the day I finish with chemo....
PhillyBird: So, did they locate your brain? LOL I'd be afraid what they'd find if they took a look in my noggin. Corn fields probably...
So, today was The Spa, #7 of what should have been 12 but will now become 13. My wbc was too low for the Abraxane, but not low enough for shots (I'm grateful). So here I was with my cancierge Kathleen at my side, all of my knitting projects in progress, my laptop, iPad and phone, snacks and ice pack, etc. And I was only there for Herceptin. A mere 45 minutes altogether. Very disappointing. I know, I know, who gets disappointed when chemo is cancelled? I was just looking forward to a relaxing day. So my cancierge, who gets major props from me, said "you are not going home to the wreckage of your house. Let's go shopping and out to lunch and to Paneras to knit afterward." So we did. Dropped money I shouldn't have at the knitting store but what great retail therapy! Found some funky broaches for my hats at the thrift shop next door, along with silverware to replace the spoons and forks that I believe my older son eats. I refuse to buy good cutlery for every day anymore. He loses all of it. I don't know where. Then we had a great lunch at Panera -- but I'm forbidden raw veggies and fruits this week. Limited to the thick peel ones. Bananas, cantaloupe, watermelon, oranges. No berries.
( After Panera we came back to my houseboat and I did a wig fashion show. Kathleen voted for the blonde wig. My kids like the reddish one. I still kind of like the punky one, but all three of them are fun. I'll start wearing them when it gets cold out. Keep my head warm. And freak out my co-workers.
I don't expect much in the way of SE this week since no Abraxane. I wish everyone a good Labor Day weekend, or the best one we can get.
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ellenquilt, I know what you mean about dark chocolate, it is my favorite chocolate by far, in fact I can have a chocolate craving and if I can't find a good dark, I won't eat it...I don't even really like milk chocolate anymore.
I have found for that metal taste we get, that flavored teas, specifically Honest Tea, is awesome, I can tase them and they are good for you, very low or no sugar, in some flavors, no artificial junk...and they just came out with some drinks called Honest Ades..pomegranate and others.
Also, I seem to make frittatas a day or two after chemo, I crave eggs and veggies and it works like a charm, I eat a piece for breaky or lunch almost every day after chemo for several days.
And can't help but crave my frappes, it's sick, I love coffee flavored ice cream..have put on a total of 9 pounds since the first tx, but had lost about that after dx... I am exercising some, but nowhere near what I was pre tx.
I will be walking on Oct 8th for "The Cure" http://louisville.info-komen.org/site/TR/RacefortheCure/LSV_LouisvilleAffiliate?fr_id=2296&pg=entry
my first walk as a survivor, I guess I have the right to say this...I have survived 4 rounds of FEC LOL.
misswim, thinking of you dear, love ya girl, hang in there, the waiting game is the worst part of this journey, I'm sure it's just chemo and stress playing dirty tricks on you.
OK, another weird symptom....it seems my muscles in my esophagus don't work correctly...I've had GERD and a hiatal hernia for years, but it seems that many times (once or twice a day) I go to swallow a drink, pill, food..and it goes down the wrong way, and I choke a bit. It's scary, just happened as I was writing this eating my frittata and a swig of coffee. I choked on it, and I'm chewing small bites and being cautious of it, it's like the flap that's supposed to close when you swallow, doesn't close, it gets lazy...anyone else experience this during chemo? Did I mention chemo SEs suck!!!
xoxoxo
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Thanks girls. Hoping for the best, expecting the worst. My anxiety is through the roof. My Dh lost his mom at two to mbc. I have an 11 year old who needs me. It all seems very cruel. Love you guys for your support and prayers. Will post Tuesday with results.
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rabbit - I had something sort of similar. The day of and maybe day after chemo, I had a little difficulty swallowing. It happened each time and I know I wasn't imagining it because I would forget about it until the next one and it would happen again and I'd think...oh yeah. I have no idea why. All four times it went away though after the first couple of days.
Also with you on the egg craving. Each time I've made a batch of egg salad for the weekend. Just finished eggs for lunch.
Has everyone given up sugar? I have cut back for sure, but not given it up. I'm still stuck on the idea that if insulin spikes really fed cancer, diabetic patients would be dying at much greater levels than non diabetics and that's not the case. Also, when you hear of 25 year survivors, they weren't giving up sugar, they just survived. I'm buying more organic, eating more veggies, etc. but haven't gone extreme yet. Also during chemo, I just ate what I wanted and what I could eat with my docs restrictions. Seems like during chemo is when you want your cancer cells active, not small and hiding. Now that I'm done, I'm going to get back to green tea, more antioxidants, supplements, etc. Interested in everyone's thoughts.
I'm having some shortness of breath, which worries me. I know AC can cause congestive heart failure. I had an echo on Friday and will have results next week. Hopefully medications can reverse any damage. Has anyone else had heart problems with AC?
thinking of everyone -
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bcisnofun---Wild, I made a big batch of egg salad the other day! We must be craving protein. I have not given up on sugar yet. One of my guilty pleasures are the Snicker ice cream bars. Just the right combo of crunch and cool. Interesting, my sweet tastebuds have not be affected at all by chemo. Thank goodness.
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I had my 4th and last AC infusion last Tuesday. Yeah!!!! Next Taxol (12 weekly)
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ellenquilt: That is very helpful to hear that Taxol gave you that kind of back pain. It was only that one treatment? Mine lasted for three full days. Did you have difficulty walking? I am just so hopeful that that is the only time it will be like that!
I have been eating eggs a lot on chemo too. I have tried to cut back the sugar in the whole house but it's just making all of us want it more. This week we gave in and bought a box of Twix ice cream bars.
bcisnofun: I get some shortness of breath on the steroids after AC treatments. But it sounds like you would not be on them right now, right?
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Aletheai: Do you know how high your wbc's were when your doctor stopped your Neulasta? Mine was 47 yesterday which is the highest I have ever seen mine. Usually it is more like 16.
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ellenquilt: I meant to say, I love the new photo! And, I hope your home is getting back together.
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Ralston - yeah for being done with AC!
Ellen - I agree - love the new pic. How fun you are that your cancierge wants to hang out with you!
jbug - took my last steroids on Sunday, so 6 days ago. Hopefully no damage to the heart. Maybe it will get better with more rest. I felt like each AC took me a couple days longer to really fully recover. Last time it was on Sat, so maybe by Monday this time I'll feel great again.
Glad I'm no the only one who didn't fully give up sugar!
Thinking of all of you -
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Ladies: I think we've all been craving protein. My son is still grilling for me. Delicious lamb chops the other night. Everything tastes better when I don't have to cook it! LOL
Misswim: Thinking good thoughts for you! Keep us posted.
JBug: The back pain was just that one time and the IV push of steroids and benedryl knocked it out of me in about 20-30 minutes. But it was excrutiating, and I have a pretty high threshold for pain. I was so out of it that when I was offered Demerol, I forgot that it makes me barf and it was only when the needle was approaching my arm that the mental alarms went off and I said "No! Wait! I can't do Demerol. It makes be barf all over the place!" Whew! A close call with barf city. Haven't had the back pain since, but I'm not on Taxol anymore either. The allergist said I was allergic to the Cremaphor that is the binding agent in Taxol. That's why I was switched to Abraxane, to which I still react, (ergo the low WBC this week) but not as severely. So my infusions will be very slow and closely supervised to make sure I don't have any more bad allergic reactions.
So folks, since I only had some steroids on Thursday night and Friday morning, I've lost my superhuman Roid Rush this weekend and am almost a normal human being. I never seem to make it all the way to normal. Oh well. After my lovely day with my cancierage yesterday, today I went to a baby shower in Staten Island for my friend/boss's daughter who is due with her first later this month. I made her a christening gown, crown and booties in anticipation of the big event. You can see pictures on my knitting blog for those who are interested (http://oitqknitwits.wordpress.com) You have to scroll down to about two months or so ago. for the pictures. The bonnet and booties were finished some time after the gown. I have already been told that daughter #2 is getting married, so it's time to begin the next gown. Love it!
Met with the public adjuster this morning. I'm going to let him wrestle with FEMA. He figures between $40-50,000 worth of damage, mostly structural but about $10K in contents. I'm already planning how the downstairs will look once rebuilt. From the studs up. Floors, sheetrock, doors and doorframes, electrical, plumbing etc. etc. etc. Plus all my appliances need to be replaced -- the rebuilt motor in the boiler is temporary. The whole thing and the water heater really do need to be replaced, along with my extra freezer, washer and dryer and several A/C units that were being stored in the garage. Tons of clothing and other stuff to. But the smell is receding a lot, My son's girlfriend has become the Queen of Bleach and mops with bleach over and over every day to get rid of the smell. I'm forbidden to go downstairs by my kids. So I don't. I'm getting used to climbing over plastic bins of quilts, and bicycles in my dining room. LOL Like I said, I never ever make it all the way to normal.
I hope everyone has a great Labor Day weekend. Mine will be lazy. I think I might go shopping for some fall clothes for ME! This year is all about ME. LOL It feels good.
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bcisnofun...I was already on a low suger diet before dx and had just lost a bit of weight, now the chemo gives me major sugar cravings, but mostly for frappes and ice cream. Oh, and banana walnut bread! What you say makes sense though, interesting. I definitely plan on cutting back on sugar after my txs. The steroids make me feel so puffy and bloated, I hate it...I feel like I've gained a ton of weight, much more than I have!
Ellenquilt, hope you get that all sorted and yes, it's all about ME too, it has to be!
I'm hoping the docetaxel I start on the 21st, doesn't make me have the sugar cravings as bad as the FEC...I know the nausea is not supposed to be a problem.
Hope everyone has a great holiday weekend!
xoxoxo
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Don't know if I have a sugar craving, really. Just like to have a caramel now and then. But in the first five or so days of each cycle, can't really taste things too well. I have been eating a lot more meat, to get protein and because I seem to be losing weight if I don't eat more than usual. Still, I am pretty reasonable and keep eating tons of fruits and vegetables - as usual. Keeps me regular too.
I am so sad about my hair again. I also think that even though I feel pretty good physically right now, I am emotionally weird. Like I want to be with people, and not be with people, all at the same time. I think it is because I don't recognize the person in the mirror anymore and I start to think people think I look a little weird with the bandanas. It must be the chemo and the tapering off of the steroids that plays tricks on your mind.
Maybe I just need to go to the gym and lift some heavy weights. Thanks all for letting me vent.
Hope all are enjoying the weekend.
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Holy body pain. Went for my first Taxol treatment on Wednesday. Beginning on Saturday afternoon the bone and joint pain kicked in and has been pretty, well, painful. I didn't know what to expect, since my MO said I would probably have bone/joint pain, but it's far worse than I had anticipated. I'm taking pain killers to ease the pain, but it just doesn't seem to be alleviating it. Not to mention, I walk like Frankenstein's Monster and have zero appetite.
I know some of you ladies have had similiar symptoms with the Taxol. About how many days has it lasted. I'm on day 4 today. One Taxol treatment down, 3 to go
Wishing you all a happy and safe Labor Day Weekend!
Linda
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Phillybird I strongly believe the chemo and steroids are pulling you down. I feel like that first 5 days post chemo. I like my friends visiting and yet during those down days I don't want any friends near me because of how I look. I even take photos of my bald patches and then zoom in to see if there are any growth! Sounds pathetic right!
Sugar - even if we avoid them they are hidden in many of the foods we eat. Moderation is the answer I suppose. I remember weeks before my diagnosis I was on high sugar craving and must have desserts all the time - perhaps my cancer cells were screaming for the sugar fix???? -
I was so excited to be done with number #3 out of four that I forgot about that yicky feeling for the first few days afterwards-- nothing tasting right, general blahs. Gotta resist the temptation to eat sugar. It doesn't even taste that good when I give in.
Hang in there Linda. It's usually taken me about a week to start feeling somewhat normal. Try to get some exercise, it really helps. -
Ok the sugar thing - its true and sucks. even good sugar is a no no. But really lets be honest like frances said, its in everything so we have to think in moderation. Before I was DS'd I was juicing organic fruits. Guess what, super bad, I thought I was being healthy and I was doing was feeding the cancer. Also another one for you that are hormone positive stay away from Soy. So even being vegan is the choice for a lot of cancer patients, we really do need out proteins, just think organic if you can afford it.
Alright Thursday is mt last TC, I will be officially done. I'm so excited I can's sleep. Of course the stupid hot flashes don't help. I'll check in but wish me luck
Miswim- all of us will be thinking of you on Tuesday, its going to be fine, sending hugs
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Thanks, Dexxy. Honestly, though I will be devestated if sometinh further is going on, at least I will know. It's the not knowing that is just so tough. I appreaciate everyones good thoughts. Send them at 1:00 Tuesday.
Hope you are all having a good weekend.
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Lindaqs: For me the body pain started on day 2 after treatment. So first Taxol was on Friday. Pain was worst on Sunday and unbelievable! I could barely walk. The pain meds were not helping. It was a bit better on Monday. By Wednesday, I did a little work at home for my workplace, but found it very exhausting. Thursday I was able to go into work for a meeting and work for awhile. I felt like I was pretty much myself again by Friday.
Force yourself to continue the water. They gave me fluid by iv in the ER and just that helped. When I got home I forced myself to drink a ton of ice water. Because my appetite was so bad and the pain with it, I hadn't realized that I wasn't pushing the water like I did on AC.
Sugar- - - I think Frances is right. Moderation is key on the sugar. I have several books about identifying sources of sugar and working on dropping the habit, because I have been extreme with the sugar habit. Sometimes looking at those makes me lose my mind, because it is just everywhere! But, if anyone is interested, my favorite is Get the Sugar Out, by Ann Louise Gittleman. The other is Sugar Shock by Connie Bennett (which has a recommendation by Dr. Oz on the cover).
Phillybird: I go through these moments of talking and acting like myself around people at work, home and appointments. Then I get home and look in the mirror and ask myself how I allowed myself to just be myself without being self-concious. Like, how dare I just put myself out there so comfortably when I look like this? Then I think, what's the alternative? Cowering in fear and self-doubt? What I am doing initially is good, it just shocks me when I look in the mirror and realize that I just moved through my day acting so normally. (Yes, I think going off the steroids contributes.)
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Thanks for your thoughts JBug and Frances. My friends think I am handling this all so well and they tell me how good I look and stuff. They don't know the long sad face I make each morning and evening when I take off the bandana and brush my hair. Today I feel very hot and sweaty, but it is probably to do with heat and sun. I have been taking lots of pictures of my progressive baldness. Nothing weird about that, Frances.
Had another caramel and a (small) oatmeal cookie with my coffee today. Otherwise - lots of salad and vegetables. Nothing tastes too good - especially not the ginger tea that I thought was so good 3 days ago. Go figure!
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Hi everyone! I haven't been on here in a while. I like to keep everyone abreast of things going on with me though. I have been doing pretty well I guess. I have had to skip 2 seperate chemo treatments due to low blood counts. I take neupogen injections. I landed myself in the hospital on Tuesday night/ Wednesday morning I ended up with a temp of 103. At the time my counts were low and my body was trying to fight off and infection. My head was pounding, my throat hurt and my ears hurt as well. They gave me 2 different types of antibiotics and after being in the ER I feel much better. I no longer get sick on day 3 and 4 since they changed up my meds. Now I only get really tired. I guess its a better trade off. Enough with this sad stuff.
I really wanted to share with everyone that I will be doing the Susan G. Komen race. I have created shirts for my team to wear. I am believing they will look amazing. We are called the BreastSavers. Our shirts will have lifesavers over the breast and instead of say lifesavers they will say breastsavers. We will also have a lifesaver package on the back of the shirt saying the same thing and on the little flag that usually says 5 flavors it will say saving all flavors. I am really excited about the shirts. There will be around 40 people on the team. It is awesome to be able to see all of this support for me. I am also doing fundraisers to help raise money for me since as you guys know it is expensive to be sick. I ordered rubber bracelets and they are selling really well. Is anyone else doing the race? Does anyone else have anything fun going on?
I can't wait to hear you guys stories. I will post a picture of the shirt when we get them in about 2 weeks.
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Bless0Mel
I am doing the race Oct 8th in Louisville, Ky..my team is "Rabbit Foo Foo" long story, but a nickname from my mom, hence the name "Rabbit" I am hoping to have around 20 on my team, just started the sign up process a few days ago, getting donations etc.
When and where are you walking or running?
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Hey, rabbit. That's sounds cute rabbit foo foo. Are you making shirts? I will be doing my walk/run (there is no way could run the whole way. I hoping to be able to finish the 5k period) in Birmingham, al. Are you nervous about the race? I tend to get exerted pretty easy these days. I am really excited and with so much support surely I will be able to make for the whole thing with bells on
I even want to get some of those pink five finger shoes for the race -
Phillybird,
You probably DO look good. When I look in the mirror I look past the thinning top and straw like sides and concentrate on my face. I smile and see that it looks as vibrant as ever. Maybe try something else besides bandanas. Two of my friends gave me hats -- the kind I would probably never think of buying myself, but they are very cute. Luckily it's cooling off in Chicago (sounds like that's not true in Philly yet), so they don't look too out of place. I had a long conversation with a stranger on the bus the other day. I was wearing my bicycle helmet and he was looking at me all the time and I don't even think he noticed anything strange. I'm glad I've kept the little hair I have left so there's something to peek out from under the hats. -
Hi all - congrats to those doing the races. What a wonderful way to fight back on this disease so we can all beat it and our children will never have to fear it!
blessomel - glad you're feeling better
For what it's worth, I'm convinced that the steroids cause a temporary depression. I definitely got more self conscious and sad during the time immediately after I stopped taking them each time. The worst was dose 2 when I just lost my hair, started my period and had that depression. Not a happy time. Good news is...no more periods!
Every dose I had took longer to recover. I still don't feel 100% and I'm 11 days out from my last one. Very glad there are no more.
I think only people on this thread will appreciate this, but I think I might be getting the beginnings of underarm and leg hair. I certainly never thought I'd celebrate having to shave my underarms, but I will! Hair is hair and hopefully it means it will start on my head soon.
Everyone have a good SE free day.
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Bless0Mel, I am not doing shirts, just using the ones they provide. We are doing the 1 mile family walk but if I'm feeling great I will probably walk the 5k run. I am a little nervous about how I will feel on that day. Typically it would be a good day in my new 21 day cycle of life LOL, but my first docetaxel is the 21s of Sept, so I have no clue how the SEs will be for me on the new chemo. I am getting lots of mixed responses to how the SEs are for this one. Some say it's a breeze, some say it's a nightmare??? We will see!
The steroids are pissing me off...I swear I look at pics of myself and I see bloated arms, puffy face, it's sick, I hate it! I've only put on a few pound the last several weeks and I feel like it's 20 pounds! I don't get it.
now I'm constipated, I ache in every bone and muscle in my body right now. This sucks sometimes! That's my steroid crash alter ego talking LOL I swear I am so grumpy and yucky after coming off steroids.
Ok..back to reality! Have a great Monday everyone, is anyone in the chair today? I haven't looked at the list the last few days....
xoxoxoxo
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Hi Everyone hope you are all having a S/E free long weekend.Is anyone in the chair with me this week.I am having Fec# 3 so I will be half way done.Though if its anything like the last chemo I will be in bed for 12 days.Hope not as my 16 year old son is singing in Ityaca New york @ a fair on Sat and I will be upset if I cant make it.We live in Ontario and its about a 6 hour drive i missed his last gig last month the 1st one ive ever missed in 8 years..Rabbitt how was your 3rd treatment how long before you were feeling good.I will only be 3 days out before travelling I dont know if i should chance it.
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