Gemzar/ Carboplatin chemo treatment
Hi, my name is Lori and I started gem/carbo tx this week for a 2nd recurrence of tnbc. I was wondering what to expect as to se's and how it worked for your particular cancer. Sometimes it helps to share stories with others that are going through the same thing or have gone through it.
Thanks.
Comments
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Lori, I have been on this combo for about 6 months. So far, it is the only one that has worked for me. I have mets to my liver and it has completely gotten rid of all of them except one. The only one left (the largest one) has decreased by about 75% so far. As far as SEs, I had some nausea in the beginning but with Zofran and Ativan that helps. The main SE with this combo though, is that your blood levels can get off. My hemoglobin has been low which makes me extremely tired and I've had to get a blood transfusion. That has happened twice. Low white counts can put you at a risk for infection so you need to be careful around children/crowds/sick people. I have done this and then been on antibiotics which in turn lowered my platelets. You'll probably have to take a Neulasta shot to boost your WBC and that can give you some bone pain - take Aleve. All in all, it is an aggressive treatment for me, I go two weeks in a row and get both drugs each time, then get a week off, but it is all worth it because I have finally found something that is working and working fairly fast! By the way, I did not lose my hair with this treatment
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amgsc, thanks for your response. It gives me hope that I can shrink these numerous nodules that have come up on my skin again. (about 9 of them and possible deeper nodes). I was on AC/T which was said to be one of the hardest combos, and I did alright with nausea. I did crash about 3 days after each treatment with that, and was wondering if nadir hits with this tx also. So far 2 days out and all is fine. Do the rounds build into a cumulative effect? I had neulasta with AC.
I hope you are able to continue on this tx and it keeps your cancer at bay. My MO said I could possibly be taken off carbo at some point and only use gemzar. Have you heard of that?
Best of luck to you,
Lori
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Hi, Lori. I hope you are still doing ok. My first MO wanted to put me on the AC/T regimen at first but the echo revealed a problem with my heart (at 38 years old!) and he referred me to a cardiologist. The cardiologist didn't recommend that regimen because of the Adriomycin. I have heard that combo is hard and know several who have 'endured' it. I ended up on the weekly taxol and then when that didn't work, I moved on to Xeloda. As far as the nadir, its not the same for me as with the taxol. Like you, it was 3 days out for me. With this one, the nadir has to do more with my blood counts so I may not notice it at all, just depends on how low they get. I haven't gotten a cumulative effect yet as far as SEs. Probably the worst SE was the few times my hemoglobin was low and my MO says there was nothing I could really do about that. I was just extremely tired and could hardly make it up the stairs without being out of breath! I got a blood transfusion and after that everything went back to normal.
I can ask my MO about the possibility of getting off carbo and just having gemzar and see what she says. I have a new MO now, she is young and stays up on everything all of the research. I asked her if I could possibly stretch out the time between my treatments if we got rid of the mets but she doesn't want to do that because the research hasn't supported that yet. I never thought to ask her about getting off carbo.
I hope you have the same results with this tx that I am having. There is hope!
Amy
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well, after 5 1/2 hrs, my 2nd dose of gem/carbo was delivered to me yesterday. I think the office was backed up from the 12-14 " of snow we got on monday and tuesday. I feel a little tired, my platelets are a little low, but the rest of my #'s are good. Did you experience any burning in your arm with the Gemzar? It was very uncomfortable, so I had them add more saline into the iv. It only helped a little. They are testing my clotting factor, if its good they will schedule me for port surgery. I wonder if Gemzar will make the port area burn?
I'll have 2 wks before my next dose. Oh yeah, meant to ask if there were any other se's, like headaches. I don't want to jump to conclusions, I could just be coming down with a head cold, but I cant help but worry that this cancer is spreading upward.When I was on Xeloda, I got watery eyes and nose, and thought maybe the headaches could also be a se from this combo.
On my off weekend, I'm planning to go to my birthday dinner with DH to Ruth Chris steak house. YUM
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hello ladies,
I am new to this thread it was passed on to me by the wonderful ladies on stage IV liver and bones mets. I am new in mets level i just started the carbo+ gemzar combo i do one week both and the week after only gemzar then 2weeks off. I have Neupogen on the 9th day after gemzar for 5 days. My SE's are fine with the chemo a little nausea and consitpation on the first and second day. It is the neupogen for the blood count which makes me feel like i have a flu and i get some fever but not alarming and some bones pain . I also get 10 days of 2 antibiotics , motilium for nausea, stimitil for vomitting, and a special mouth wash for the sores to use after each meal and methadexazone for three days after the carbo. I had a port catheter installed from the beginning, with carbo i have some sensitivity on the port but the methadexazone takes care of it. With Gemzar alone i get nothing. I will have a blood test this week to prepare for the next doze. Fresh ginger with lots of lemon slices and two spoonful of manuka honey are doing wonders for me. Do not boil the mix just pour hot water and let is sit on a warm surface for a while then add the honey. I hope this helps. And wish you all a speedy NED status. By the way what is nadir?
Hugs to all of you
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Lori, sorry you had to wait so long for your last treatment. Hopefully it won't happen again. I had a port put in from the start so I haven't had any burning but I have heard about that. I got a headache the past two nights, but like you, my platelets are low so maybe that has something to do with it. I haven't had any headaches before now. My onc. told me about a good website wwww.chemocare.com that is helpful and has a lot of information specific to the drugs and side effects. You can also check out the blood counts and the side effects of those.
Woodylb, welcome to this thread but sorry you have these mets. I just started getting mouth sores this time around, I've had about 7 cycles so far, and also got a prescription mouthwash. That has taken care of them. My blood counts got so low with the typical regimen like you are getting so my onc. has me on gemzar and carbo both weeks in a row but a lower dose each time. I get nuelasta on the 9th day and have those bones pains like you get. I do take anti nausea meds around the clock - Zofran and Ativan. They also give me a 5 day Zofran and 4 day Ammend during chemo. So far, that has taken care of the nausea and vomiting that I started out with. I'm glad to hear that the gemzar alone is easy. As long as it is working, I can deal with SEs.
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Hi all
I have triple negative and have just gone through 3 cycles (which was really five infusions because one was postponed from low WBC count). Will be getting a CT scan on Tuesday which will help determine the effectiveness of this combo. I still have swelling in my left breast (no surgery as cancer was discovered at stage 4) but it seems to have gone down and is less inflamed. I have been trying to figure out a forum on this site that is current and applicable. I am keeping myself sane by daily walks, art and time with family. Health wise I have low days 2 and 3 after chemo but generally only foot neuropathy and some nausea. Hope all of you are enveloped in the light of hope and health. love
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amgsc i am sorry as well we are all there, we seem to have the same ER+ but different type od cancer from what i have seen on other thread i.e. 12 years mets IDC work well with this combo. Your onc probably chose this regimen because you are still able to handle. I have had no symptoms for liver or bones all my blood tests and enzymes even my marker are normal. My onc chose this combo because he said you handled ACT very well and it is the worst and toughest treatment , you will handle this one. The only problem with this one is the blood, platelets and neutropenia. So please be careful not to bump youself or cut and avoid large crowds. I had some headache but tolerable with any anti imflamatory med they gave me proxene. I also have zofran lollll i forgot to mention it having so many meds to take. And i take xanax to relax or ambian to sleep. I have a lot of insomnia. But i avoid to take all these meds when not needed. I am sure you will do well and i hope this will keep the cancer from progress and send it into a deep sleep. My thoughts and prayers are with you and everyone else on this site. 😘🙅 please keep me informed.
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hi Lori,
I am sorry you are here and i hope this works for all of us as it did for others. The combo is not really bad in terms of SE except for the blood , and that the dose could be adjusted to suit you. Are they giving you neulesta? It helps but the SE are a bit tiring but it helps keep your blood count more or less stable. Protect yourself from viruses and infection, and keep your activities safe to avoid hematomas and bleeding. I wish you good health and a good response. Be well.
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happy birthday slowloris for many many years to come ! And yes you get some headaches and sore throats if you are getting neulesta for the blood count. Enjoy your birthday.
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amgsc , i forgot to tell you i get the carbo every 21 days, i get carbo, gemzar one time a week later i get gemzar alone, two weeks off then repeat the same pattern. Ask your MO about this maybe it will give you time to breath from carbo. My liver mets are extensive 10 spots showing on scan both lobes. It doesn't hurt to ask. I hope she accepts it will give you at least a week to breath.
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Hi to all the new posters on this thread. I'm sorry you all have to go through this, but it is a doable treatment. I am not considered stage IV, but they do call it metastases.
woody, I wasn't aware of receiving only 1 of the meds on some of the infusions. I get both, 2 wks on, then 1 wk off. I have not had any neulasta shots with this yet. I did have them with the AC/T. so far I'm just really tired and slight nausea in the early morning. Nadir is the term they use when you hit your "low point" after tx. On AC, mine hit about 3-4 days after, when the blood counts would bottom out and all I would do is sleep. on C/G, I only notice it slightly, but I am tired the whole time. I'll see what my off wk does since I haven't experienced one yet.
Prosper, before I started this tx, I started getting swelling in my hand and arm. Since starting, I have noticed it has gone down dramatically. The cancer invaded my lymph and skin system so I guess it had started to block things up. I will now think that the meds are working since there is a decrease in swelling. I hope this trend continues for you.
Thank you all for the birthday wishes. Another milestone to be proud of!
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slowloris, thank you for explaining nadir for me. For me on AC i was doing well but with neulesta the only side effect was weight gain but my last 4 cycles which were tax were bad i swelled all over in water retention and i had gained 20kilos and totally bold and extremely tired. I lost the weight 6 months after. With the C G combo as it appears i am little allergic for carbo , we know that since when i did both meds i had a lot of redness on the chest/neck area and itching after 3 days with steroids and allergy med it went away. When i did the gemzar alone i had no reaction whatsoever , it is wheni did the neulesta i got a soar throat and my voice was gone with one day bones pain and then it was gone few days later. So actually just like you i am actually not getting any day off or to rest lolllll. Carbo causes a lot of tiredness because of the blood , my onc said that my sleep pattern will change and that i should go with the flow. I don't sleep at night i sleep at early morning hours for few hours and some on the coutch in the afternoon. My energy level is low as well. But i make the effort to do small things around the house. Gemzar causes swelling in the arms and legs so don't always think it is the cancer. You may be doing very well but still swell from the meds. May god be with you and mostly for all of us gives patience and indurence. The mix of fresh ginger and lemon sclices and manuka honey just a tea spoon is giving me a huge boost in infusion and i chew the ginger in small pieces. Try it , it also helps with the nausea. Xxxxx
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Well, my 1st dose of round 2 was postponed due to low wbc's. I don't like this at all, I feel vulnerable when I'm not on the chemo. I do know it has begun to work since some of the nodules I felt before are no longer there. So I am taking an extra week before I get my round 2. The MO did give me a shot of neupogen (sp). She will examine all of my blood counts and dosage, and maybe make adjustments or give me neulasta after my 2nd infusion in each round.
It seems that the meds that might work also really do a job on your blood counts. Nothing is ever easy... I guess I have to just wait this out and pray the little buggers don't start to grow again.
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Got the word today, Port surgery being done Friday, with chemo immediately following. With the Nor'easter coming, I hope it doesn't get cancelled.I'll crawl there if I have to.
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Am joining you ladies tomorrow: first gemzar infusion. Am nervous, anxious, but I know that is normal for facing any change. Xeloda failed me, and since it works as a pyrimidine antagonist and gemzar also works as a pyrimidine antagonist, I am fearful that it won't work for me. And I see that some of you have had major improvement on this drug, so I am going into it with a can-do attitude (I hope!). I know that in any battle, there will be casualties, and that may be minor or major, will just have to wait and see, believing it is the right choice with SEs that I believe I can handle. I will not be getting carboplatin, so that was interesting that some of you are asking about using just the single drug. My MO is pretty current with the latest research, explains things pretty well to me, and she did not even talk about using them together. Then again, she knows how anxious I get about new meds, and maybe she thinks she will add that later if needed .... who knows? I am rambling ... I am going to pick up some ginger and lemons at the grocery today, get my water bottles filled, keep ahead of the nausea game, and hope for good results.
Slowloris, I hope things are going well for you at this point, that you were able to get the port and your meds, and that you get a break in this miserable winter weather soon!
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linda, i am sorry you are here. If you took xeloda do not worry about Gemzar , the side effects mainly are blood count, as for nausea ask for zofran it works well. I get one doze of carbo +gemzar , and the week after i get gemzar alone and the SE are not bad mainly fatigue. Gemzar is not always given with carboplatine, it is given with Taxol. But i think each doctor chooses the combination or one depending on the case and the patient's needs. Do not worry you, you will handle it and i hope it works for you, for me and all the rest of us. God be with you.
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slowloris,
I hope you were able to get your dose ...big hugs
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Woodyllb, I haven't been on this forum in a while so just catching up. I started out on the regimen that you are currently on with the C/G one week and then Gemzar only the second week. I ended up in the hospital after that because of my levels so my onc. changed me over to a lower dose of each drug each week and is giving me each of them over the two weeks to see if that helps with my blood counts. I end up getting the same doses as before. This has continued to shrink my tumor but my CBCs do get off at times. I do hope we all continue to have success and can stay on this for a long time
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hello agmsc,
Glad to hear from you, and sorry about your problems with the blood count , wereyou getting neulesta or neupogen after the gemzar? Because i did , and i do it at home for 5 days , it tires me a bit but it keeps the blood at a respectable levels, i get a little fever with it but not alarming. I also get 2 antibiotics for 10 days after each cycles. Doses should be adjusted to your weight. I get 500ml of carbo and 1700ml of gemzar. So far i've had after 21 days of the first carbo 2 really tiring days where i had no energy to move , but then i was fine. For now my on onc is doing 6 cycles of this combo. I am at my third, on the 10th and 13th i will have a bone scan and 2 days later the frontal body scan, if there is a response he will continue if there is none, he told me we have a long discussion. I am keeping my fingers cross and praying. How long have you been on this combo? And how long does your onc planning to keep you on it? agmsc i do hope you keep responding and maybe than he can move you on inhibitors , please keep me informed. I hope it works for both of us and all the ladies on this board. Keep the faith.be welll.
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Hi Woodylb,
I get a nuelasta shot after my 8th day. I am responding well to this treatment even though my CBCs get off sometimes. I just had a scan and my liver tumor continues to shrink. My oncologist also did a CA 27.29 on Wednesday and my counts have gone from over 500 to 44! This is after my 8th cycle with Gemzar/Carbo. I know that you can get a false positive but she said that she has been monitoring these counts and they have continued to take a downword progression over the duration of my treatments. The last time I got antibiotics, for a sinus infection, they brought down my RBC so I don't get them unless I absolutely have to. I see my onc. this Wednesday so I plan on asking her about future treatments since I am responding so well (she called me with the results). I hope you can have the same success!
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My God amgsc! This is great news , i am so happy for you, don't think negative with false positive, it is stable and continuing to shrink. I learned something new from you the CA27-29, my onc always checked my Ca15-3 and mine was never abnormal even now with multiple liver mets it is low even lower than before. ILC is funny this way and the mitotic rate is low, chemo is said to be less effective on it, but it still effect cancer cells , i keep my fingers crossed. IDC responds better to chemo and you are PR+ so i am almost sure after the chemo you will be put on hormone inhibitors and they will continue the job accomplished by chemo. Today , my onc told me i will be put on Aromasin ,since i am postmenopausal. Waiting for the scans the most they can give of our combo is what you got 8. Mine for now will do six. I do how ever have an anemia , so i started to eat meat again and i feel better. The antibiotics here where i am , my husband works in Saudi Arabia are a standard meds for chemo, to prevent infections , so i am forced to take one i dropped augmentin. The insurance here is forced by the government to pay all medication , during and after treatment. So far i have been lucky at least in this matter. It is normal for your blood to do this carbo is very tough on the blood. So far you are handling it well compared to others, hang in there just for a little while, just get red of those mets. IDC can go NED , not ILC if it does it would be a miracle:( but he told me it is controllable. I believe in miracles loll and i am counting on one...you will have one , i have a good feeling. Keep me posted on your status and eat well for your RBC. I will let you know my scan results . Big hugs and yayyyy ! Awaiting for your full response and regression. Kisses
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hello amgsc and slowloris,
I hope you are both well , just wanted to give you my news. My doctor called about my scan today. He is very happy, my largest tumor went from 2.5to 2.2 cm and small ones became less prominent he almost missed them. So he says it is a very good initial response so i my onc on saturday and to my fourth chemo session. Just something cheerful to share xxxx
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hello ladies,
Just a little update, i just had my abdominal scan after three sessions of carbo+gemzar , and i got the results through my doctor. The biggest tumor shrunk from 2.5 to 2.2 , the smaller ones are less visible and no news tumors. He is very satisfied with the first response. Next sunday i'll have my fourth.
Slowloris and amgsc how are you? Hope you are both well, amgsc i hope you contine responding. Slowloris, i hope you are well with your chemo sessions . Wish you well both of you.
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Hi all. I took a little break from the computer. Woodylb, I'm so glad to hear the good news. I pray that this combo continues to work for you.
On Friday, I had round 3, but with some changes. My wbc's, but more importantly my platelets, were taking a dive with the 2 wk on, 1 wk off regimen. The risk of bleeding was too great. My Mo thinks that it's more important for me to continue with the carbo, so instead of only getting G on the 2nd wk, we switched to a DD type of schedule. I'll get both , every other wk, with neulasta the day after. Hopefully, my counts will rebound in time for the next round. This wk, we stayed at the same dose as 2 on, 1 off, and if my levels are good, she'll increase my dosage each round until we find the top level my body can handle.
I get tired 3-4 days after the infusion, but it's manageable. a nap in the afternoon helps. Apparently, it can cause neuropathy also. my fingers feel a little "tight", but no tingling or numbness like I had on Xeloda. My only other SE seems to be watering of the eyes. It's almost like hayfever or an allergy. This also happened when i was on X. Nausea feeling peaks about 3-4 days also, but is also manageable. It's like a slight case of morning sickness.
I don't know when I'll get my next scan, but I'll let you all know when I do. Here's to continued success on this treatment!
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Had my 3rd infusion yesterday. Officially MO said it was the 1st infusion of 2nd cycle - one cycle is 3 weeks, with gemzar at week 1 and 2, nothing for week 3, then start over again. So far counts are holding. Felt like a big bus or semi hit me for the first 24 hours - maybe I should hire one of those lawyers that advertise on TV to go after those semi drivers who cause accidents ... just can't find the one that hit me! In any case, I am staying on top of the nausea and pain better. Pain not so bad this time, but MO said it was probably tumor flare with the first round, and the mass over my ribs is very tender, she said it may be that cancer cells are dying and that is a good sign! Tumors have not shrunk but they haven't grown, so that is good as they were growing very quickly before I started this. She said we will know better after I finish 3 cycles. Keeping my fingers crossed - quality of life is not horrible on this, my hands are SO much better than they were on Xeloda. I am not getting carboplatin, I think that is the drug that can cause more neuropathy and maybe even more nausea.
Prosper, we haven't heard from you - hope scans were improved. Slow, amgsc, woody - hoping you are all having good days. Who else is out there on gemzar with or without carboplatin? Sedning you all positive thoughts and lovingkindness.
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Slowloris, i hope so too , i hope this combo keeps working for both of us and everyone else.
I am glad your MO changed the way she is giving your regimen if your blood is so affected. It gives it time to regenerate. I am having watery eyes too, and a slight case of neuropathy mainly on the side of my hand up till the elbow but it is not as bad as it was with ACT. My platelets took a plunge after the first session but after that they went acceptable. Still though i can t squeeze anything on my body or when they draw blood it becomes blue instantly. So i am careful. Keep me posted. Xxx
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Hi Lori,
I too have a 2nd TNBC. I started the gemzar/carbo treatment last Thursday. I was originally trying for a clinical trial but my since my 13 cm tumor is only in the left axilla area it isn't advanced enough for me to participate.
I am doing two weeks on and one week off. I was not sure what do expect after the last chemo 5 years ago but so far side effects have been minimal. I was very tired day 2-3 and also had bad nausea. I called the cancer center and they called in the nausea medication and I am feeling much better.
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P74, I'm so sorry that you have had a recurrence. did you find it yourself, or was it picked up on routine exam? I was on 2 wks on, 1 off to start with. I really didn't feel that bad, just really tired. My wbc's and platelets, however, tanked down way too low. My MO waited extra week, to my dismay, and she knew I wasn't happy with that as my tumors grow incredibly fast. So we are attempting a DD schedule every other week. Friday will be 2 wks from last infusion, and if my counts are good, she'll up the dose.
Keep us updated as to how tx goes for you. Good luck , and remember to continue to "LIVE" each day to it's fullest. (((hugs)))
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Lori,
I am glad I found this thread and look forward to hearing how treatment is going for everyone. Hoping all goes well for your Friday.
I diagnosed it myself. I had been feeling swelling and heaviness in my left arm and under arm area. I figured it was lymphedema but once I went to my primary he sent me in for testing and sure enough TNBC but only in that area. Bone and CT scans all came back clear except for enlarged adrenal gland but I am hoping that this treatment will work.
Does anyone know how long treatment can last? Is this the type of chemo that can be given indefinitely? When I met with my MO I had so many questions and I forgot to ask how long I would be on treatment. I honestly don't care how long as long as the cancer is not growing.
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