Starting Chemo Feb 2010?
Here is our list ([age] as of chemo start; =started,
=done!):
1/21/2010: leta17, [41] [port] TC 6x. Rads. Tamoxifen
1/27/2010: CAL30, TC 4x. Tamoxifen
2/2/2010: lindee629 [49] AC 4x, Taxol 4x. Rads. Tamoxifen
2/2/2010: MomWhoFan, [53] TCH 6x w/ Herceptin (1 yr)
2/2/2010: MW943 (Marie), AC 4x, T 4x
2/2/2010: lbreedl (Laura), [46] [port] TH (12x), FEC 4x, H 1yr. Surgery, Rads. Tamoxifen.
2/3/2010: faithfulc, [40] [port] TC 6x. Rads. Tamoxifen
2/4/2010: christine66, TC 4x, Rads, Tamoxifen
2/4/2010: Grazie47, [57] [port] TCH 6x, Herceptin 1 yr. Rads.
2/4/2010: kpj (Karen), [50] Taxotere and heceptin pre surgery
2/4/2010: kshep, [49] AC 4x, then T 12x
2/4/2010: retrievermom, [55] TC 4x, rads
2/5/2010: CinD (Cindy), [49] TC 4x. Tamoxifen
2/5/2010: donsuzbee (Susan), Faslodex injections and Aredia infusion
2/8/2010: Writer (Colleen), [51] [port] TCH 6x w/ Herceptin 1 yr. BETH trial w/ Avastin for 1 yr. Rads.
2/8/2010: Bambaloos (Mandy), [49] Taxol wkly 12x, AC 12 wks. Surgery. Rads
2/9/2010: ennayttap44, [54] TAC 6x, Rads
2/9/2010: mebrown, [44] TC 6x
2/10/2010: roso88 (Cathy), [34] TH 12x/Herceptin 1yr. Rads Tamoxifen
2/11/2010: burley (Kim), [39] [port] AC 4x, T 4x , Tamoxifen
2/11/2010: mofend (Mo), [48] TCH 5x Herceptin 1 yr. Rads.Tamoxifen.
2/11/2010: nancyinaustin, TAC 6x, Rads
2/11/2010: pegeyore (Peg), Carbo/Gabopentin
2/11/2010: SunnyCoconut, AC 4x dd, Taxol 4x biweekly
2/12/2010: avanarsmom, AC 4x. Taxol 12x wkly + lapatinib or herceptin.
2/12/2010: copingkris, TC 4x
2/12/2010: suz6, TC 4x
2/15/2010: BaileyCan: cyclosphomide (sp?) and Taxotere 4x
2/15/2010: rababar, [port] A/C 4x, Taxol 4x
2/15/2010: vmarie (Verene), [44] TCH 6x w/ Herceptin 1 yr. Rads. Tamoxifen. BETH trial w/Avastin for 1 yr
2/16/2010: Leah58, [58] [port] TC 4x
2/16/2010: riley702 (Carolyn) [49] [port] clinical trial Avastin/Taxotere/Xeloda X 4; then Avastin/AC X 4; surgery
2/17/2010: beth3172, [37] TCH 6x. Herceptin 1 yr. Rads. Tamoxifen (?)
2/17/2010: grdnslve: [port] AC ?x, T?x, Rads.
2/17/2010: makmak3030 (Marina), [39] [port] Taxol/Carbo (wkly, 6 mo). Herceptin 1 yr.
2/17/2010: me2u (Jessica), [37] AC 4x, Taxol 12x, Rads. Tamoxifen
2/17/2010: MomoB, [60] Taxol (12 wks), FEC 4x, Surgery, Rads
2/18/2010: cbranner (Crystal), clinical trial TC 6x
2/18/2010: Ezscriiibe (Michele), [port] TC 4x, AI (5 yrs)
SUPPORT Michele!! 10/2010: Avastin, Gemzar, and Navelbine
2/18/2010: sgerrity, [port scheduled 2/10], [regimen?]
2/22/2010: Janina, CMF 6x. (2 wks on, 2 wks off). 6 months.
2/24/2010: Ado, [?] 6x + Herceptin 1 yr. Tamoxifen
2/24/2010: salsoda62 (Sally), [47] [port] AC 4x dd, Taxol
2/25/2010: ariesrottie (Donna), [52] TC 4x
2/25/2010: swiftbird, [42] [port] TC 6x, Herceptin 1 yr. Surgery. Rads.
2/25/2010: Teel, Taxol/Herceptin wkly x 12; Herceptin 1 yr.
2/26/2010: ginadmc (Gina), [48] AC 4x dd, T 12x wkly
2/26/2010: TiffanyGanell (Tiffany), [port] AC4x, Taxol 12x. Rads.Tamoxifen
?: feroza, FEC 3x, Taxotere 3x
3/2/2010: countrystars, [54] regimen?
3/2/2010: staceyt TC 4x, Rads, Tamoxifen
3/3/2010: frosty1, [49] [port] TCH 6x, Herceptin 1 yr, Tamoxifen
3/24/2010: teemee, [43] TC 4x. Rads, Tamoxifen
Comments
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Great to hear from you! Your story is SO close to mine I am joining this as well, even though I will be starting late next week. I am 41, IDC, Stage 2a, 1.4cm, ER+, PR+, HER2-, BRCA both -, 1/8 nodes my ONCOTYPE was 10, which was great, but the lymph node involvment is the bummer, even with a score of 10. I am being told the data on ONCOTYPE is not that old and the data is mostly on node negative women and also many of the women are post-menopausal, which I am not. So I am still going crazy with which chemo route to go...these were my recs...
First Opinion AC x4 and Tx4, Second opinion either TAC every 3 weeks x 6 or TC every 3 weeks x6, but she would prefer I do TAC every 3w x6 because of my age. My surgeon too, who was fab, wants me to go full out. Our doctors are thinking similarly I think, I am leaning toward the TC though.
My port, which is freaking me out more than almost the chemo, goes in Monday. I will decide by then which chemo route to go. I'll keep you posted as to my progress, I am just ahead of you:)
We will do great! It is only a short period to our LONG lives!
Leta
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I will be going in too in Feb - IDC triple negative all lympnodes and surroung tissues clear - grade 3 (2.3)
How do you get a second opinion - I would like to avoid chemo if I can : 6 sessions once in every three weeks with nulast injection after every chemo and then 21 days of radiation. Can I avoid the port?
ANy answers please
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feroza - I would absolutely speak with 2 or 3 different oncologists, you may not get very different recommendations but you need to be comfortable with them, their knowledge, attention to detail, bed side manner, everything. Ask your other Dr.'s for recs or if you know of anyone who has dealt with BC themselves who they use. Forgive me I am new too to the lingo, what is triple negative? Since you don't have any node involvement, did your Dr. order the ONCOTYPE DX test? If you are young, pre-monopausal, your Dr.'s will likely recommend chemo. They showed me the stats and it is worth it to me to throw everything at this, so that I don't get it again. Yes, absolutly get the port, I am over my freak out over it, the chemo drugs are very strong and you don't want your arms looking like a drug addicts!
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Hi
I was in your places 4 years ago, no oncotype then just ACx4 then Tx4. I tried to avoid the port, ruined my left hand viens after the third AC and had to put in the port any way
Good Luck, I am glad you are able to connect here.
HH
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Leta, glad we can connect here. Good luck to us both. I'm leaning toward TC as well. The second oncologist ordered Oncotype for me, although it won't really change the fact that I'll get chemo. Still I'd like to see a score. How's your port experience?
Feroza, I think the onc's usually go aggressive for women who are premenopausal and especially node positive.
I just had my port in yesterday (Friday 1/15/2009) at the same time with the reexcision. The port site sores more than the reexcision with some redness today. No fever yet. Is this normal?
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HH, thank you for sharing your experience!! So glad this is all behind you now.
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hi ladies. i'm new to the forum.
i'm having my port implanted on Feb 1st and will start chemo on Feb 5th. can't tell you how anxious i get when my mind starts wandering...
my onc has recommended the following -
AC (4x dose dense) followed by Taxol (6x), then Radiation (6.5 wks), Herceptin (1 yr) & Tamoxifen (5 yrs straight)
i had a partial mastectomy in Dec '09 & just had a re-excision on Jan 15th. i can't get into Dana Farber for a 2nd opinion until my margins are clear. definitely want a 2nd opinion since they're throwing everything but the kitchen sink at me.
i'll post regularly to share my experiences. can't tell you how appreciative i am to be able to talk to others who are going through the same thing.
sending out positive energy to you all.
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faithfulc - My port is going in Monday morning, I have heard that the port sight can be tender and red for a couple of days. I'm hoping it won't be too bad, I'd like to get in one or two more good workouts before I start my tx on Thursday
roso88 - welcome, this sight has been great, I craved information and it is great hearing directly from others who are or have been in our shoes. The kitchen sink is very popular it seems:) but it is always good to get other opinions.
I am going with TC x6 every 3 weeks....Thursday, I begin...
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Hi Ladies,
I'd love to join you if I may. I'll start chemo the week of Feb 8th. I'm feeling pretty overwhelmed. I'm sure you all know about that. My oncologist has given me the choice of Taxotere, Cytoxan, and Herceptin for four cycles (her recommendation) or Taxotere, Carboplatin, and Herceptin for six cycles. Four cycles is cetainly more appealing than six. Either way, Herceptin infusions are weekly throughout the chemo cycles and then I would switch to Herceptin every three weeks for a year.
I have been going through some of the posts and making a list of things I might need. It's all so strange.
Looking forward to knowing you.
Best,
T
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Hi all, I am actually on the Jan 2010 Chemo group - but wanted to share a few things that I have learned so far on the beginning of this journey. There is alot of good info on these threads!
LETA17 - Had my Port installed on 1/7 - just took the dura strips off today. I was told no heavy lifting for at least 4 days after it was installed. It more than likely will be sore for a while. I was no showers for 4 days, as site could not get wet. Port was on the right, and my cancer is on the left, so while I was under, they also took out the sentinel lymph nodes, and another core from my cancer. So, I really couldn't move either arm without pain for about 4 days. I was given good pain meds - vicodin - and that helped some. Just be carefull with exercising.
TEEL - I am on TCH - every 3 weeks for 6 cycles, then surgery, rads, then Herceptin alone every 3wks for a year. Based on size of my mass - 4 cm, Chemo first to get it to stop growing, and hopefully shrink it.
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Update on my port experience:
Port went in Friday 1/15/2010 on left side under collar bone, along with re-excision on right side.
On Saturday the cut on the port side went pink and it was more sore than the re-excision cut. Actually my right arm was free to move pretty much anyway I wanted, but the left side could not move at all without soreness and discomfort. Saturday night I had to take a pain pill (Oxycodone/apap 5mg) to sleep comfortably. I had not taken one pill since my first lumpectomy last December, so this was how uncomfortable the port site was.
Sunday was much better, but the pink area persisted. This is Monday now, and I am able to do a lot more with my left arm - such as flushing the toilet. Still taking it easy. That one pill Saturday night seems to be the only one I needed so far.
At the rate I'm improving, I'd venture to say after a week I should be OK with the port. Fingers crossed. I'm meeting my oncologist on 1/27 to finalize chemo plan. Leaning towards TCx6 every 3 weeks.
Leta, good luck on Thursday.
Roso, I'll probably start around 2/3. Let's keep encouraging each other as we know that this is only a phase - one that's temporary and will lead us to a more healthy state.
Stcardsfan, the mention of vicodin made my smile - as I love the TV show "House."
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faithfulc - Good to hear things are improving and taking the pain medication when needed is good, it is a short term need and that is ok!
For those of you who have not gotten a port, I learned today that there are different size ports. I was so freaked by the size of the port my onc showed me that I couldn't bring myself to read up on it, even on this website. Anyway, my surgeon during pre-op told me she had some good news and the port she had was 1/2 the size. So far I only have a little tenderness and only a small bump. My surgeon said too that I can do my normal exercise routine as I feel up to it.
Be well and keep on moving!!
Leta
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faithfulc - hang in there. i hope the port site gets better fast.
leta - thanks for the tip. i'll definitely inquire about port size before i have my procedure.
i'm healing from my re-excision on fri. the skin around the site is red and irritated - actually bothers me more than the excision itself. i'm waiting for results from my surgeon...hopefully my margins are clear so i can move ahead with port & chemo. just want to get it all over with asap : )
sending out positive energy to you lovely ladies.
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Roso88, I have almost the exact same diagnosis as you: just under 1cm, grade 3x3, strongly Her2-positive, weakly ER+/PR+. Plus several cm of DCIS. Had a large lumpectomy and reconstruction on 12/18. Having my port installed on Monday, starting chemo on or around 2/8. Headed for six cycles of TCH, with Herceptin continuing for a year. Yippee!
Feeling good, though, and have recovered beautifully from the surgery. Taking that as a good omen.
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Ladies, I've edited my initial post at the top to keep track of our start dates/treatment regimen, etc. Will try to keep this updated as we move along. Leta17, good luck on Thursday.
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Thanks faithful. I forgot to add radiation after chemo for me. I get the whole package!
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Well, what do you know?... Turns out the hospital sent the wrong specimen (something that belongs to another patient) to the Oncotype people 12 days ago. The correct specimen (that actually belongs to me) was sent out just yesterday. Some delay in the process... It's always human error, isn't it?
I'm hanging in there. Port site is much better today (day 5) - not much limation in motion in left shoulder. Yay!
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faithfulc - thanks for including me in the February blog as well:) I will have rads after chemo and then tamoxifen for the 5 years.
I took my steroids tonight as instructed before my first tx tomorrow...Surprisingly I feel relaxed, hopefully I will get a good night sleep.
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Leta17, thanks for the update. Hope the first tx goes well for you.
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I have some good news to share: my PET/CT came back a pretty clean report. Only minimal activity at the surgical site. Otherwise no evidence of lung nodules, lesions, etc. No adenopathy identified. The official opinion is "No evidence of hypermetabolic metastases."
This and the fact that the port site is about 90% back to normal makes today a pretty good day. Going back to office to work tomorrow. (I've been working from home so far for 3 days.)
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Hi, may I join you ladies?
Will be starting Chemo Feb 4th, I'm not exactly sure what the name of the chemo agents will be.
Should be getting ?????????plus herceptin every three weeks X6, then radiation daily for 6 weeks, then herceptin every three weeks for a few months.
Grace
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Hi, I had my first tx (TC) on Thursday, and so far so good here on day three. My energy level is good, even without the steroids today, apetite is fairly normal, I ate lobster last night and it was as good as always! I did not have any wine though, tasted it, and it did not taste right and so I am just going to go without wine until I am through all of this. I feel a little 'fuzzy' in the head at times but other than that I feel like myself! I really hope I can keep my daily routine with work and kids going, I'd rather take the time off after all of this to celebrate with the family! But one day at a time:)
I am going to get my wig styled later today and my hair cut to the same style, then if my hair follows others I will be back in 2 weeks to have it shaved, I don't want it coming out in clumps, I'd rather take it off myself.
Enjoy the weekend and keep moving! It is beautiful but cold here in NJ!!
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Grazie - Welcome to the board. I'm HER2+ as well and my onc has recommended ACTH. There has been a recent study showing TCH is just as effective so I'm curious as to to what chemo treatment you'll be getting. Would you mind sharing?
Faithful - Congrats on the clean scan! My margins are clear so I can move forward with seeking a 2nd opinion at Dana Farber. Depending on how long the review will take and what they say, looks like my chemo start date will be delayed til Feb 12th; I am also leaning towards just TCH (6x with Herceptin continuing for 1 year) instead of ACTH - would you mind updating my info up top?
Leta - Your update is so encouraging. Glad to hear all is going well. My doc did not instruct me to take any meds prior to TC (just Emend if I go with ATC route). I'm just supposed to pop the steroid day of treatment. Interesting...
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Welcome, Grazie. Maybe you'll be having Taxotere and Carboplatin with the Herceptin if you're Her2+ -- that seems to be the standard. That's what I'll be getting in two weeks.
Leta, I sure do appreciate hearing the positivity as I head into this! I hope you keep doing so well!
I'm having my port installed on Monday. The procedure doesn't take long, but for some reason they want me checking in at 10:30 (fasting, of course) for a 1 p.m. surgery time, and said I probably won't go home until 4. Long day, but I really trust my surgeon.
Getting my chemo cut next Friday, then going wig shopping with my 16-year-old daughter, a theatre girl who loves wigs, so that will make it fun instead of sad.
Good luck to you all.
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roso, my oncologist (a UCLA guy) feels strongly that TCH is the best and that there is no need for ATCH. He said there are some east coast oncologists who hold on to the old model. Based on what he said, I would encourage women to push for just TCH unless their doc has a really convincing case otherwise.
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roso88 wrote:
Grazie - Welcome to the board. I'm HER2+ as well and my onc has recommended ACTH. There has been a recent study showing TCH is just as effective so I'm curious as to to what chemo treatment you'll be getting. Would you mind sharing?
I really don't remember, I know it will be the herceptin and something else. I will find out more when I go Feb 4th, then I will post it.
I was supposed to start chemo Jan 7th but my pathology report wasn't good so I had to go back in for surgery to remove the rest of my breast. Plus a million more tests, so my head was spinning and I forgot.
I had my port installed Jan 13 along with the surgery to remove the rest of my breast. Just now waiting to get on with the rest of this crap.
Writer and Roso88 thank you for the welcome.
Grace
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Hi everyone,
I start chemo Feb 4 and have already gotten so much out of reading these postings! I think this little group will help me a lot. I had my tumor out 12/16, 1.8cm, no lymph nodes thank goodness. But it was grade 3 (9/9) with Oncotype score of 25 so the Dr. changed me from no chemo to yes chemo. Yay me
I'll be getting 4x TC every 3 weeks, which seems pretty easy compared to some of you. Then 6-7 weeks of rads and 5 years tamoxifan. No one has said anything to me about a port. I hope they don't spring it on me at the last minute. I'm not emotionally up to a lot of surprises right now.
I'm not planning on a wig, although I may change my mind. I just cut my hair from shoulder to chin length, am having a hairstylist friend cut it shorter in the next week or so, and shaving it at the first sign of trouble. I think the actual hair loss would be harder for me than the baldness.
Thank you Leta for starting this thread. I absolutely hate the idea of poisoning my body with chemo, but I know I have to do it, and I already feel a little better reading this thread.
Good luck and good health to all.
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Welcome, teemee. You may not need a port with "just" four rounds of chemo. We Her2-positive gals have six plus a full year of Herceptin, so our veins would have more attacking. Hopefully you'll be just fine for four rounds.
I'm also doing the gradual hair thing, hoping I will slowly adapt, just as I've slowly adapted to each stage of this cancer process as it's happened. Getting a short cut next Friday, and then at the first sign of it going, I'll get at least a buzz cut. Gives time to get used to the mirror....
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Just wanted to say good luck to all you gals starting chemo this February and to let you know there IS a light at the end of this tunnel. I started mine in February of 2007 and it was so scary until I got that first treatment behind me! You will come to love your ports - it makes getting infusions so much easier. And as you go through chemo your veins shrink which makes even getting a regular blood test "challenging" at times.
Some easy tips that will help: drink TONS of water before, during and after chemo treatments. Seriously, drink so much that your teeth are floating at least two days before and two days after treatments. You want to keep your body hydrated and flush the toxins out as quickly as possible to prevent issues with kidneys and liver. Slather lotion on several times a day all over your body and don't forget your head. You will want a soothing aloe. Also dissolve a tablespoon of baking soday in warm water and rinse your mouth out four or five times a day to prevent mouth sores.
And my number one piece of advice: eat anything you want and da** the calories! If you want ice cream, eat ice cream. If you crave a Big Mac, order the extra fries. And if you remember to eat at least a couple of crackers every hour, it will go a long way toward preventing nausea. (Nausea is self perpetuating, the less you eat the more nauseas you become.)
About two weeks after treatment you will feel a tingling in your scalp, and that means the hair is about to go. I found a woman locally who specializes in alopecia and chemo patients and she shaved my head in her private room (the same day as Brittney Spears!) and then cut and shaped my wig. When I left the salon no one even gave me a second look. I had several wigs to match my moods which was lots of fun. (And one big benefit is that it only takes ten minutes to shower and be out the door!)
Another very unexpected benefit was the love and support and lifetime friendships you will make with your chemo buds. This is the one place you can let it all hang out and know you are totally understood and no one thinks you are whining.
If you have any questions at all, I will be delighted to answer in any way I can. Chemo is not for wusses, but in a lot of ways it was not nearly as bad as I expected. The first treatment was the worst, and then after that you learn how to alleviate most of the side effects. Not everyone has the same side effects, so listen to your body.
Many hugs coming your way, my dears!!
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Vegas - SO good to hear from you, your words give us all strength!!!
Teemee - Welcome! There is also a thread for those getting TC that may be helpful for you as well!
All the personal stories on here have been so helpful, even those that are having the worst SE and experience from chemo, inspire me to keep moving forward, because even in the face of the worst, they are still moving forward and working through it with everything they have. We all will get through this, like Vegas, and the many, many others that came before!
I think I am going to watch some football, but staying far from my husband who has a nasty cold! Kids back to school tomorrow and I am back to work. I am weirdly looking forward to the routine of it all!
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