chemo or not?

I hope you are well. What did you decide? You did not say what stage and type of BC you have.  I think you should get to the best cancer hospital that you can and trust the advice the doctors there give you. Chemo is short term, death is forever. God keep you! 

LBM2020 said:

16 rounds

 

Just finished 16 rounds of chemo. 4 AC & 12 taxol. More side effects than I imagined I would get. Still suffering with congestion-neuropathy - continued nail problems on toes and hands that have caused infections- on antibiotics twice- among all the other medications to treat symptoms -list goes on.  Now seeing surgeon to go over new tests and prepare for my surgery as a triple positive that spread to the lymph nodes. Hoping that the chemo worked. Then of course radiation and tamoxifen for 10 years. This is all so scary and my new normal which I can only take one day at a time.  Would feel better if the side effects of chemo subsided.

---

 

LBM' the side effects of the chemo will slowly get better. The radiation and Tamox may give you new side effects, but, hopefully you will fewl better soon and on the path to good health!   Hang in there!

Suzilyn- I am so glad you posted this! Thank you. You are not alone: you have me in the same boat. I suspect there are few of us, or the others are not speaking up. I was diagnosed Stage 3, aggressive breast cancer, already spread to lymph nodes, in early Autumn 2014. I had bilateral mastectomy wth 11 lymph nodes, all positive for cancer. By Spring of 2015, it had spread to many ribs (painful!!) Now this is 2018 and the cancer is in lots of bones from my skull to my femurs. Before I got cancer, I always said if I did, I would NOT have chemo. So far, I have not, and I am fairly sure I won't. I was always very healthy, and still am,except for the cancer. I cared for my mother in my home until she died at 84 from stroke-related dementia. I wouldn't EVER want to live like she did. Then I cared for my dad, who died 14 days after a massive stroke. I knew better than to call 911--he had made his wishes very clear that I was not to do that. So, like you, I never want to end up like either of my parents. It is hard, very hard, to resist what it seems like everyone else is doing: chemo and radiation. But I feel pretty strongly that I will stick to my guns in this. Mostly, I am trying to avoid as much pain as possible, while still being able to drive and take care of things at home to some extent. My husband is 83 and in decent health, and we care for a 94 year old friend of the family in our home, too. The 94 year old is in pretty good shape, but his life consists of eating, sleeping a LOT, and a little TV. There is more to life than trying to live as old as you can. Quality, not quantity, you know. I don't want the side effects of chemo trying to fight an incurable disease. So there are at least two of us who are thinking the same.  --LarkAlexis

Hey, you did not mention the type and Stage of your breast cancer. Talk to your oncologist about your dilemma about chemo, even after, if advised, you should go for chemo. I know its after-effects are terrifying but trust, it is just one phase that will pass. Keep your hop[es high. God bless you.

I am sorry you have to go through this.  It is rough.  At times I wanted to throw in the towel but I thought of my kids and my grandbabies and I decided I have to fight the best I can.  Somedays are so so bad but the next day comes and you try again.  If you go through some of these older post you will see the struggle, the fear, the frustration in all of us.  I refused the taxol, I had too hard of a time on the 1st type of chemo.  I jumped to Herceptin for  8 mon.  It is tough too, but they kept a close eye on my heart and I had no issues.

  No matter what type of cancer you have, it is a beast and we are all suffering in one way or the other.   But we are also here to encourage ea. other and to allow you too get your frustration out.  We get how you feel all the way.  

I am now 8 months out from chemo and recovering and it will take a long time.  The meds I have to take for the next five years cause major side effects.  I broke my leg  3months ago and it is taking a long time to heal.  They took me off the 5 yr. pill due to high chance of blood clots and oh it was great to go off it for a spell, but I knew not being on it was dangerous to my future so we chanaged it up to one I had been on before that caused me so much muscle and bone pain, HOWEVER, I am going to try it again because I just have to give it a shot.  I just have to see my kids and grandbabies.  I pray to God all the time and He sees me through.  I try to find a positive note to ea. day.  I have learned the little things are sometimes the best things.

I too have lymphodema, both arms and hands.  PT does help and will educate you on how to care for it.  you can get it undercontrol and stay on top of it.  It took a long time in PT.  I no longer wear my sleeves (2 yrs out)  but if I did not keep up on the manual massage and keeping them moving, they would be a mess.  I have neuropothey from diabeties and the chemo has enhanced it.  I have two broken disc in my back.  The docs say, "oh your a mess!"  and I say, "oh but doc, I am a good mess!"

Hugs and prayers going up,

Annie

Suzilyn805 said:

herceptin

after the chemo what meds did they put you on?  I got the port installed last week and didn't even think I had to go to the hospital for it from the way everyone spoke of it. Oh it is nothing just a bump. ah well it isn't just a bump. It was a real surgery, and now I have this thing in my throat, chest. I felt like what I would imagine a gun shot would be. I think this is the same philosophy they give to the side effects--oh nothing to it it is treatable. I am terrified. I have no one. I have 2 nausea meds and got no clue why I have 2 and what the difference is. Guess i'll ask or read before wednesday. I've never had nausea--I've had food poisioning once, but not with pregnacy or sea sickness even during major storm. Figure if I don't eat I won't get sick? I have always been healthy, I only suffer from seasonal allegies, but I worry about my immune system with chemo. I do not believe in getting flu shots--because I first of all think it is a scam between the pharma and insurance companies, but more importantaly why do I need to infect myself to protect myself. I want my life back. I had to leave my job due to this because I could no longer do job requirments. To find a job at my age and being sick--well sure anyone can guess that won't happen. especially with no boobs!!

I dont know if your asking me or not about what meds I am on for 5 yrs.  I was on Arimedex which can cause and it did, bone and joint pain.  Because I was post menopausal and had a complete hysterectomy yrs ago, I went to Tomoxifen, but broke the leg and had to go off due to high chance of blood clots.  2 months later still healing from I the leg I still could not go back to the Tomoxifen.  My onocologist was having fits because my breast cancer was estrogen positive and my numbers were high so he wanted me back on a 5 yrs pill ASAP.   I agreed to try Armidex again but told him that if I got all that pain again, we would have to revisit the issue.  So far (3 wks.) the side effects are not as bad as they were when I was on it the first time.  So the doc and I think the first time I was also recovering from the Herceptin treatments on top of it. 

I know this will be hard to believe but I still have my port in.  Many docs leave your port in place a whole year after chemo.  I am glad they did.   I dont even notice it now.  Because of my lymphedema in my arms, they do my blood draws from it.   I get it out in August of this year and I will miss it due to those blood draws needed every 3 months but your cant keep it forever!

While going through chemo your immune system will be compromised.  Those flu shots are in your favor, so are the pneumonia shots.  I stayed away from people alot during cold and flu season.  I told people, dont come around me if you got a sniffle, my life depends on it!  They respected that. 

I had to quit my job.  I was so sick.  I am now on permanet disablity due to my back and diabeties neuropothy being so bad, not my cancer.  It took 2 yrs to get it.  It was tough. 

One of my biggest frustrations is my loss of memory, how to spell and the proper use of grammer.  I had a 4.0 all the way through college and my chemo brain wiped that out.  They say they dont know how long it will last.  Some people get it right back and some people never do.  We understand that here and it's ok.  My friends and family understand and love me anyway.  I get mad but move on and dont let it ruin my day. 

Keep a journal, it will help you see the progression and the patterns.  None of it is easy.  My fight started Feb of 2016.  I am way way better now and I try to find the silver lining and blessings to everyday, that is how I have gotten through this. 

Prayer, laughter, positive energy surrounding me.  I have been mad alot, I have cried alot.  I have pouted and then got up the next day and said, OK, try try again.  I remind myself I am a warrior and I go to this site and read all my other comrads stories and struggles and I learn from them and find some inspiration from them and many times, I make my some decisions based on some helpful hints from them.  We are all alike and we are all different.  In the end it is your choice, your life and we dont judge.  We are here for you.

Hugs and prayers,

Annie

PS: Dont forget water water water and lots of veggies help!

This is a really personal decision...the problem is, you don't know how chemo will affect you.  i have triple neg, and just finished 3 months/4 treatments of TC.  I worked most of the time; minimal tummy issues, aches and pains, major fatigue, and of course the hair loss.  Probably a total of 10-15 days actually down for the count.  The hair loss is a thing...You think it's nothing (compared to dying it is nothing), but it puts something very personal out there.  So the cancer is always on your radar, can't forget about it when you get those sad looks from strangers.  I opted to do neo-adjuvant (pre-surgery) chemo (stage 2, no lymph nodes impacted)...figured i was pretty lucky, and didn't want to push it in case there was some microscopic cancer cell waiting to pop.  Plus, it looks like it shrunk the tumor, so surgery will hopefully be a minor lumpectomy.  But everyone is different, and if you chose to go without, more power to you!  I wish you lots of luck whatever you decide.

JayDeee said:

chemo or not

I had double mast diag   stage 2  1.9 size  est pos her2 neg, i had two nodes tested no cells found.  Then they hit me that i "should do easy chemo as my doc put it"  I was told My nodes were neg now they want chemo, why!  She said just in case.  I said no to that, i am taking the AI.  I also have a stage three on the replecation rate  onco score 50-65 they say this is high and i should do the chemo.  So far i am taking my chances the chemo is off the table now from my doctor.  I can only hope that i made a good decision.  Just my story,  What have you chosen?

I was diagnosed with Paget’s Disease of the nipple, and then breast cancer the month I turned 40.  I quickly had a double mastectomy and no cancer was found in my lymph nodes.  I had the Paget’s and dcis and 2 small tumors. It was all stage one.  They just told me I am HER2+ and should do chemo. 

I really don’t want to do the chemo. 

Thoughts? Advise?