January 2012 chemo
Comments
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Hi everyone! I just wanted to share a service with all of you for housecleaning. There is a group that is able to provide general cleaning for cancer patients for 1x a month for 4 months, for free. I'm sure many of you are like me and would greatly appreciate a little help. It's not that everyday is terrible and I can't do any cleaning, but it just would be a great help. They are throughout the U.S and Canada. Check out the website www.cleaningforareason.org
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ely - Every time I've tried to sign up for that, I get a note saying the service is full... but they refer to the town next to mine, not mine, and we have a Maid Pro here that participates (I wound up paying them to come before my surgery). I've called, but they won't take requests over the phone. I'd be interested to hear from some people who had more luck with that.
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Hi all, I'm just catching up on posts.
Kite - I had the stool softeners too. I may try not doing that next time and see if the diarrhea and cramping is better.
Momof2 - I feel like that about my next treatment. It's hard when you are feeling good again and you know that you are not going to feel good after tx. It does help that I know more what to expect. Hope your next tx is easier. ((hugs))
I am becoming a wig expert. I did not go and get fitted, although I probably should have, because the shop close to me charges $300 for a good wig. Instead I've ordered mine from the Cancer society TLC site and from Paula Young. I've spent $300 already, but I have 3 instead of just one. If anyone out there is purchasing one soon, look for the hand-tied front. This gives you a more natural looking part and fits closer to your head. Also, Paula Young has some reasonable Human Hair blends. I just got one that I love but the color does not quite look the same as it did on my computer so I am blonder than I meant to be. You can blow dry these with moderate heat and supposedly curl them (haven't tried that).
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I had the same negative experience with cleaningforareason.org
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Unfortunately the cleaning service doesn't list any in PA. Oh well, nice idea.
Judy - thanks for the wig ideas. I just shaved my head this morning and realised I'm not really a hat kind of person. I have one wig I bought at a local shop that fits well. But it is not high quality and might not last very long. I should really get a backup. I have tlc catalog but had not checked out Paula Young. My wig lady talked about the hand tied front type. she referred to them as lace front I think. They do look better but she didn't have any in the larger size. I found that I have a big head. I'm off to check out Paula young.
I had my second tx yesterday and am pleasantly surprised how it is going. I shouldn't jinks myself but, no SEs yet. I'm staying on top of every little twing and doing something about it - meds, water, eating, etc. My husband just gave me my neulasts shot. Again no issues so far. I did not use Claritin the first time around and had no bone pain, so I decided to try again. MO said some don't get the pain. So we will see.
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Nancy - thanks for the list. Unfortunately, because of my nicked lung during port placement and having to have a chest tube put in, I am now starting this Monday, 1/23, instead of the original start date of 1/9. Is anyone else starting this week? I have been following everyone's progress and struggles. It is wonderful to have this group so we can help each other. I am very nervous about starting Monday.
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Tina - I am on the same tx plan. I found that the more hydrated I stayed throughout the process the better off I was. Unfortunately that also means I get up through the night to use the bathroom. I also found small meals and snacks helped, even when I wasn't hungry. Most importantly, I think, stay on top of your symptoms. If you feel a little queasy take what meds you have been given. I take zofran if my head feels ok (headache is a se of zofran). If I don't want to risk the headache, I go right to my other option ativan and compozine. I also heartburn meds - tums if mild and pepcid if more persistent.
The NP at my MO's office told me that people often report that their symptoms resemble how their pregnancies felt. I must admit that she was correct in predicting my response to tx. I feel just like the early months of being pregnant. Fortunately, I have been able to work so far. In fact, going to work really helped. It took my mind off things.
Good luck on Monday. I'll be thinking of you and sending healing thoughts your way. Even though you had such trouble with the port, you will find that it is rather easy to use and virtually pain free. Both hands are free to knit or read or do whatever. I brought some gingerale and saltine crackers to snack on. I was there through lunch so I didn't want to have these drugs on an empty stomach.
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Hi Everyone. Thanks for all your good wishes.
Well today is day 3 after my first infusion. Dare I say - I feel fine? So far I haven't felt anything out of the ordinary, except I am very very tired. But no other SE worth mentioning.
Hope everyone else is doing OK.
Love Kate
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Kate - That is excellent! Maybe this is how it will be for you. Just don't put off taking something if SEs sneak up on you.
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Great to read back on your posts Janetanned (by the way I like your pic - we are both good looking aren't we???)
I have to say I don't like my oncology nurse in charge much. She is very matter of fact and if I ask her something which she has already told me she will say 'remember I told you....' anyway, she did mention something about someone having to give me a shot the next day and I'm wondering if it is the neulast shots she was referring too. If so, what is it for? It must be after treatment 2 though because I don't have anything at all at the moment.
I must admit, it is just fortunate that I don't have any bad SE's as apart from the 3 Emend tablets I was given, and I have just had the last one this morning. I was not given anything else at all. No scripts for zofran or anything. So I am just feeling that I don't have any sort of safety net if I do fall.
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Cat - made your change to the list. I'm sorry you've had so many setbacks between expecting to start, and being able to start. I found Factor X - the unknown - to be worse than the actual tx. I think I said something in my blog about, "the next thing I know the machine is beeping and *bing* - I'm banana bread." It was over much quicker than I expected, and I walked away pleasantly surprised. Janet's right - the port has been a blessing, very easy to access and virtually pain-free. I will be keeping you in my thoughts on Monday.
So far, day two post-chemo and no side effects to speak of. I'm on top of any little twinge and have taken the Compazine twice now. Naps in the late afternoon/evening. One more day of steroids, so I'm waiting for the "drop" on Monday when I'm done with them. I'm planning to go to the gym tomorrow and run/walk, and ride the recumbent bike as much as possible - hopefully. The comments about SE's mimicking pregnancy is interesting - I never had so much as a twinge of nausea with any of my pregnancies, and except for being tired had a wonderful experience, so I'm holding out hope that that holds true now!
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Kate - well, that nurse sucks, she just needs a good slap of compassion. Sorry, but I don't understand why an onco nurse would be, dare I say, rude? I hope your next nurse is more kind and generous and patient. You deserve that, and more.
I get a shot the day after every treatment, and yes, it's the Neulasta shot. It's meant to help bone marrow regenerate, so our WBC doesn't drop too much. It can cause some bone pain as the marrow grows and expands, which is why so many have suggested taking Claritin. For some reason it helps alleviate the bone pain (I've had no pain whatsoever). My onco nurse had heard of it, but couldn't tell me why it worked. But she said if it worked for me, that's all that mattered.
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Yes the pics are very nice! My girl is an old German Shepherd who is on her last legs. Poor pup. I hope she hangs in there for a while. She is 11 and suffering with some issue with her hind quarters and there is something else going on that hasn't been diagnosed. She just isn't right. She is my husbands heart dog. I was so afraid that she would deteriorate while I was going through surgery and recovery. I don't think he could handle both health crisis' at once. She is a wonderful girl! Who is your beautiful friend? Looks like a Shetland Sheep Dog?
The neulasta shot is a relatively new and very expensive drug that stimulates your bone marrow to produce blood cells. Since chemo destroys these cells, the neulasta helps you body build more rapidly. Some people experience bone pain, particularly the larger marrow containing bones - upper legs, sternum, hips. Apparently claritin helps relieve this pain. I don't know, I didn't take any claritin. I did not have noticeable pain. Some MO's don't prescribe with the first tx. I guess they want to see how well you do?
Most people have thier cancer center give them the shot. Mine isn't open on Saturdays so we do it at home. It really isn't difficult. My husband (no medical training what so ever) watched a youtube video, read the instruction in the packaging, and gave me the shot. Almost painless.
As for other medications - wow! They gave you nothing else? I came home with 3 anti-neausia meds, steroids to take for three days, emend for two days, and 1 pain med (Oxy) for the neulasta shot. They also gave me a list of over the counter type meds that might help. I also had a prescription called into my pharmacy for an antiviral med when it looked like a fever blister was going to break out.
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Hi Janetanned. Nope I have nothing! I don't want to be a big baby or anything about this, but I am now terrified that if I do crash then I have nothing for support and I don't want to have to have the only (overkill) option if you ask me of having to go to the ER. They have given me a card which if needed should give me priority treatment if I do need to go to emergency. But that seems crazy to me.
I am very emotional today. I think it is just the tiredness, I know I am not myself in terms of emotions. I feel very teary and short tempered but I think that's just cause I am fatigued and I'm not used to feeling like this.
My girls name is Jilly and she is a Border Collie who is 5 years old. She is my best friend in the world. Understands me 100% and just always wants to be with me. She will even forsake going for walkies with the other doggies I have if someone else takes them and not me. She is just so loyal. I'm sorry your girl is getting old and sick. Such a shame that dogs just don't have a bigger life span than they do, but I bet she has had quality all the way - am I right?
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I take Claritin and stil get the bone and joint pain. Feels like I have the flu for about 3 days.
Janetanned, sorry about your dog. I lost my Jack Russell earlier this year, he had a stroke I think. He died peacefully on the way to the vet while my daughter was holding him. We still miss him, he was such a character. They are family.
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Janetanned - thanks for the tips. I'll try to remember all this stuff. I don't have any children (without fur anyway) so can't compare any pregnancy SE. LOL! I already have bad acid reflux so I hope that doesn't worsen.
Nancy - thanks for changing the date for me. I sure hope chemo will go better than things have gone for me during surgery and port.
Ely - I am going to talk to my MO about 12 weekly taxol instead of the DD every two weeks for 4 cycles as it sounds better, except for the additional time. I have spent hours looking for research and the only ones I have found were in 2008 and it was more for HER2+. I am TN. I thought there might be more recent studies or trials since several on here say that their MO's changed them to the weekly. If anyone has any references or links, I would appreciate it.
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Deb and Laura,
Thanks so much for replying and confirming the shakiness. Although of course, I am sad to hear that others have this SE, it is nice not to feel alone. I guess I will gear up for it again after my 2nd treatment this Thursday. I had made the mistake thinking that during my "down" time after my 1st treatment, I could possibly catch up on personal e-mails and write the holiday thank you cars, but 6 days of the shakes really made that impossible. I couldn't write at all and could barely type. If anyone hears of anything that will help this, please let me know. I will also ask my nurse when I go in for my 2nd treatment. Trying to go to work through this and the shakiness makes that so difficult too. Can't really do one week on and one week off at work. Hoping that once I finish AC and move to Taxol, this SE will go away.
Ordered a 2nd wig and some caps and hats today. Hoping to donate my hair next week when we cut/shave it, but not sure its long enough. Trying to come to acceptance about the hair loss.
My doctor had never heard of Claritin for the bone pain. But I had terrible lower back pain after the 1st shot. So I will try it. Worth a shot - the shakiness and awful back pain were the worst SE's for me.
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Hello ladies! Have been reading all your posts for a while now. A few days before my first chemo (Fri, the 13th) I wrote a long post myself, just before my computer power went out. Of course all my typing was gone when the power came back. Oh well. :-) So here I go again.
I am scheduled for a total of 4 x AC (every other week), followerd by 4 x Taxol (every other week) right now. The Taxol part may be changed to weekly, I will have to see. I had gotten a second opinion (from an naturopathic oncologigist), and he suggested weekly EC instead of AC, followed by weekly Taxol. So now I am waiting to hear back from my regular oncologist as to what she thinks about that, or why she would want me to stay on this path..
I am 8 days out from my first dose of AC and feel ok for the most part. - The infusion itself was not uncomfortable at all. My port was numbed with a Licadene shot when they did bloodwork in the morning, so there were no issues. Later, when I got home from the infusion, I got really nauseous though, and actually even had to throw up. - I'm thinking maybe that was from the Neulasta? I noticed that most of you get the Neulasta shot on a different day. I wonder why? Mine are scheduled on infusion day, after I am done with everything else. Hm.
Since treatment 1 I have only taken 2 of the pills that are supposed to help with side effects. I also followed the advice of some people on the board here, and rinsed my mouth with salt/baking soda - water combo several times a day the first few days afterwards, and have been wearing "sea bands" on my wrist. My naturopath suggested accupuncture, but I do not need it for now. I just don't want to add one more "to do" things to my list. I try to drink tea (ginger, peppermint and green tea), sometimes also Gatorade, as much as possible, but I just don't feel like I want to ingest anything most of the time. My son was eating a snack of roasted seaweed the other day, and the smell of it made me gag the same way the pure thought of eating the chocolate cookies I was eating during infusion made me gag.
Haven't lost more hair than usual so far (60-100 hairs/day is considered normal), but also have not washed it (I know, kinda gross), because I want to hold on to it as long as I can. Some day soon, I told my kids that they can cut my hair short. Hoping that will take some of the scariness out of it for them (and for me). And then I'm planning on having my husband shave my head while thee kids are watching. I have an appointment for a wig-fitting next Friday (before chemo #2), and they told me it would be better to have no hair left for that. :-)
Thank you all for sharing your stories, kind words, advice and support for everyone here. It means the world to me to know that I am not ALONE going through this.
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HI everyone, I am from the July 2011 chemo group and I wanted to do what someone did for our group. Pop in and wish everyone luck and tell you it's doable. I was on chemo from June 29th til Dec 7th...some of it was not bad at all, some of it gave me some horrible side effects, but I was told that I was that 1% in many cases LOL. I survived, my hair is starting to grow back and I even noticed eyelashes coming in today.
If anyone wants to ask questions, please feel free to
This forum is incredible and has helped me in so many ways.
Hugs to you all!!!
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Happy Sunday Ladies. Havn't been on in a while and just caught up on reading. Had a pretty good weekend just crampy crampy crampy! Anyone else?? I threw up a couple times too but without any nausea or warning....weird. I kinda feel like like a Sci fi project. It is very creepy havn't chemo.
thank you for all the support about my shitty first infusion experience.
"where women are worshipped, goddesses are made" (unknown)
Love and strength to you all.
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Hi!
I am new to posting, but have been reading since my diagnosis in November. My chemo (Taxotere/Cytoxin) started last Wednesday. I worked Thursday and Friday, but by Friday pm I felt horrible. I could hardly stay awake. On top of this, I got my cycle, which they said would end during chemo. I guess the timing was off. I am expected to get 4 rounds of chemo every three weeks.
So I have felt sluggish all weekend and can't decipher whether my issues are related to the period or the chemo. I think my iron count is probably low because of the period and that makes me really tired.I slept most of Saturday, but have been up for two hours this morning and feel like I have some stamina to stay awake another 2-3 hours.
For those of you wonderful ladies who have weathered this storm in the past, what is a typical pattern for this treatment? Will I feel sluggish for another week? Did you isolate yourselves from the world? I am almost scared to go outside. Any advise or coaching will be most appreciated!
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Good morning Pink Ladies (I always wanted to be a pink lady from Grease haha)
Thought I'd share my crazy haircut story with you for a good laugh.
Well yesterday was day 15 and it was evident I needed to buzz my hair. I could have pulled out every piece. It was getting messy. Anyway, I had previously cut my long hair into a Bob so I made little ponytails and let my 17 year old daughter cut them off which she seemd to almost enjoy ha. You can imagine the hideous haircut. I then tied all the hair in a pink bow and photographed it in a creative way. I then put the ribboned hair in a suet feeder cage hoping the birds would use it for their nest. Wierd I know but Im odd like that.
When my husband came home from his welding class we went out to my beauty shop to buzz the rest off. He wanted the honor of doing this.. For 28 years I have been buzzing his hair off and for the first and hopefully last time he will be buzzing mine. He was either nervous or on Speed because he was running that clipper over my head like a race car with hair flying everywhere including my face. It this point I started screaming like a banshee which led to crying like a baby. He had to stop to let me catch my breath. I instructed him to blow the hair off me like I do my customers. Apparently I was also screaming Im gonna die which I dont remember but I do remember my heart beating like crazy and feeling faint. Needless to say I or we survived and even took a group picture. I wore my Pink survivor shirt and it wear it again on the last day of chemo. The buzzing thing was a terrifing event for me but one Im sure we will laugh about for sure. Who knew I would throw such a fit but if it counts , it was my first fit. haha
The day ended great. My sister and her husband took us out for a great dinner and I rocked my new long wavy wig but I was ready to yank the vice grip off on the way home. I came home put on my new PJ's (a gift) and sleep cap and got under clean sheets. I layed there and felt very blessed. We are all blessed. We have a place to lay our heads, we have health care and we have food. Many people dont have this luxury. I dont know you all but I pray for you and send my love.
ps my newest side effect is a constant dripping nose and eyes. My daughter says I look high with my glazed over eyes.
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Good morning Pink Ladies (I alwasy wanted to be a pink lady from Grease haha)
Thought I'd share my crazy haircut story with you for a good laugh.
Well yesterday was day 15 and it was evident I needed to buzz my hair. I could have pulled out every piece. It was getting messy. Anyway, I had previously cut my long hair into a Bob so I made little ponytails and let my 17 year old daughter cut them off which she seemd to almost enjoy ha. You can imagine the hideous haircut. I then tied all the hair in a pink bow and photographed it in a creative way. I then put the ribboned hair in a suet feeder cage hoping the birds would use it for their nest. Wierd I know but im odd like that.
When my husband came home from his welding class we went out to my beauty shop to buzz the rest off. He wanted to do this. For 28 years I have been buzzing his hair off and for the first and hopefully last time he will be buzzing mine. He was either nervous or on Speed because he was running that clipper over my head like a race car with hair falling everywhere including my face. It this point I started screaming like a banshee which led to crying like a baby. He had to stop to let me catch my breath. I instructed him to blow the hair off me like I do my customers. Apparently I was also screaming Im gonna die which I dont remember but I do remember my heart beating like crazy and feeling faint. Needless to say I or we survived and even took a group picture. I wore my Pink survivor shirt and it wear it again on the last day of chemo. The buzzing thing was a terrifing event for me but one Im sure we will laugh about for sure. Who knew I would throw such a fit but if it counts , it was my first fit. haha
The day ended great. My sister and her husband took us out for a great dinner and I rocked my new long wavy wig but I was ready to yank the vice grip off on the way home. I came home put on my new PJ's (a gift) and sleep cap and got under clean sheets. I layed there and felt very blessed. We are all blessed. We have a place to lay our heads, we have health care and we have food. Many people dont have this luxurey. I dont know you all but I pray for you and send my love.
ps my newest side effect is a constant dripping nose and eyes. My daughter says I look high with my glazed over eyes.
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Hi Missyo! Welcome to this group (sorry you find yourself in the 'group')! I am not on the same chemo as you, but I did find that my second week from tx was much better than the first week. While I was able to work the first week, I noticed my energy level dropped drastically after lunch time. Fortunately, my boss took my last class of the day away and assigned another teacher. I feel bad that I'm not pulling my own weight, but after being out for 8 weeks for surgery I guess they are glad that i'm back doing something. I'm sure your period is playing a roll in your tiredness. Just go with it and sleep! Your poor system is being torn apart and your body is trying hard to repair. If you can afford the time, just rest, eat well, drink lots of water, use your meds if needed. Things will get better.
As far as isolating, I tried to avoid going to crowded places, I wipe down the grocery cart handle when shopping, I carry hand sanitizer and use it, I avoid any sick people, and I wash my hands regularly. I skip church If I don't feel up to being in a crowded, germy, hot place. I hope God understands! Unfortunately, as a teacher, I am in contact with kids who have colds. I've asked my students not to use my pens and pencils, etc. So far so good. We will see.
Just remember that this is for a limited amount of time. We will get through it and a new 'normal' will begin to takes its place. My last tx is April 13. I keep that date as my light at the end of the tunnel. I try not to think of the Rads that follow. One step at a time!
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Shell Seeker - I loved reading you hair story. I had a less dramatic shave yesterday, but certainly relate to your feelings! My husband also 'did' my hair! For years when the boys were little, he buzzed their heads. He cuts his own and usually does a decent enough job. Well, he was not so sure of himself yesterday. He blames my hair. It was too long and too soft. While I haven't complained to him, it looks pretty bad. I have weird tracks, some hair a bit longer, some almost to the scalp. I guess he was pretty nervous! I had a moment or two, as the waste basket filled, where tears came. But I decided to just hold back. My 19 yr old daughter was home for the weekend and I know how much this is scaring her. She is beginning to wonder if this will be her in 20+ years. I don't want her remembering this time as sad. It is sad, but I'm getting better by going thru this tx. I want her to feel okay with everything. I'll cry later. I do this a lot these days.
I like your bird nest idea! Whenever, I groom my dog I put her fur out for the birds. They like it! I bet your locks smell a lot nicer than dog fur! The birds could build a luxury nest!
Glad you went out and had a great time! And, yes, we are very lucky to be able to have this treatment and the comfort of home and family! I try to remember this when feeling low or sorry for myself! My nose and eyes are also runny! No more hair in the nose! My sinuses are annoyed as well! Not congested, just sore.
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Hi Everyone- Today is day 4 out from my 2nd TC infusion. I kinda feel like I was placed in the back of a tractor trailer and a giant picked it up and shook it. I just feel sore and achey everywhere. I have no nausea, thankfully, but no appetite either. My weigh in the other day showed that I lost 2 lbs between the first and 2nd treatment, not too bad. My goal was not to gain any, especially towards the end, when I felt completely normal and healthy and forgot about the first week after treatment. I have a friend that went through this and she warned me about the tendency to gain weight between treatments, so I'm trying to remember that.. I think fir her, after her chemo was done, she was more depressed about the weight gain than anything.
MissYo- I got my period right on time, just a few days after my first chemo treatment. It was much heavier and crampi -
I have 4 more treatments of taxol and then the whole chemo nightmare will be over. ONly to be followed by the radiation and hormone therapy nighmares. I will tell you one thing this lack of energy driving me to stay home all the time is causeiong me to go stir crazy. I want to go back to work!
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Sorry.... It was much heavier and crampier than usual. My MO asked about it, and she made it sound like it was par for the course?
I too find myself more emotional at times, we all have a lot going on and just thinking about this everyday is enough to make the strongest person crumble. -
Diane - Sorry about the vomiting! Does your MO want to know if you vomit? Mine said to call if it becomes a problem. Keep an eye on the crampy feeling. I had a few short bouts of diarrhea following my first tx. They came on quick and were over quickly. But I was just glad I was at home near my own bathroom! This time around I'm having the opposite problem, so I've taken a mild stool softener. These always cause a bit of a reaction, so again, I'm hanging at home today to see if the problem resolves itself.
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Michelle - This may sound crazy but I did feel better going back to work. I think that my feeling of fatigue actually lessened as I got used to being back on my feet. I know my emotional being is feeling much, much better. While I was out on medical leave, my spirits dropped lower than they have ever been. It was awful! I was house bound for much of this time due to post surgery issues and just on overwhelming feeling of isolation and fear. Can you go back to work part time and see if this helps? It feel so good to talk to others about normal things.
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