16 Rounds Of Chemo before surgery?

cashiertina · May 2009

I am quite puzzled by everything about my diagnosis thus far. The path report says I have IDC Grade 3 , Negative hormone involvement. Had an MRI, showed only local involvement, no Lymph nodes, etc. Then Had a CT scan, bone scan, also came back clear, so far so good I guess. Also had a "Power Port" implanted in my chest (Hurt Like Heck). Question is, They say I have IDC but that it is "Cystic" I have an 11cm cyst in my right breast and the Doc says that the cancer is contained within the lining of this cyst, anybody ever heard of this? I can't find any info on this at all. My Onc says that the cyst is to large to remove so therefore she wants me to undergo 16 rounds of chemo to try to get it to shrink enough to remove. If this doesn't work they will then try radiation to shrink it, if that doesn't work I guess they will remove it anyway but surgeon says that I will have to have a skin graft taken from my back to have enough tissue to close the wound. I am scared to death of all this, I don't understand it and no one has been able to explain it. My surgeon said that she has never seen it present itself like this (this cyst) , am I some kind of Freak or what? I requested a second opinion on my diagnosis ( Mayo Clinic) but haven't heard anything yet. I am really scared about all this Chemo (seems like an awful lot of it), especially now with this Swine Flu on the loose, I sure don't want to get that after I start having a compromised immune system. Any body have any ideas about all this? I would appreciate any help you can give me to understand what is going on with my goofy body. Thanks!

nelia48 · May 2009

Tina, don't panic yet! Did he say 16 rounds of chemo or 16 weeks of chemo???? I had 6 treatments, 3 weeks apart. My tumor was also VERY large --- broke through the skin before I started treatments. Had to have the chemo first, too, to shrink the tumor. By the time the chemo was done, it was down to 1 cm. My oncologist thought I would also have to have skin grafts, but the surgeon did a great job without having to do that. So. . . . all that I worried about all that time never came true.

About the flu stuff. I just don't know. Best thing is to stay away from crowded places, wash your hands a lot, use wipes when handing things like grocery carts, etc. And start building your immune system now, before chemo, with some vitamins, anti oxidents, etc.

I just finished all my treatments, surgery, and radiation, so please know ---- there is a way through all of this! Keep us updated on what happens, OK?

cashiertina · May 2009

Hi Nelia48, Thanks for the input. She (onc) said, I will have chemo once every two weeks for 4 times and then once a week for 12 times. They say that mine is not a tumor, it is a fluid filled cyst with cancer cells in the wall of it., that is what I have never heard of . I am so glad to hear that you are doing well, I sure hope that I do as well. I work at the customer service desk in a department type store so, I will (and do ) come into contact with alot of people everyday, so that is why I am so afraid of this flu thing. Also the drugs that I am starting on Monday are Adriamycin , cytoxan and neulasta. Were you on any of these? What kind of side effects did you have? I hope that I will be able to continue to work through all this. This crap sucks, I am perfectly fine right now but, I guess that is all about to change, huh? I hate being sick..........yuck !!

nelia48 · May 2009

Tina, I had the cytoxin and the neulasta, but not the Adriamycin. I had Taxotere in my mix. Some say it is the neulasta that gives the side affects. Others say it is the anti nausea and the steroids. I don't know. First 3 days I was fine. Then, it was downhill after that. I was never nauseated. But I did get very tired and weak. Taste is awful, and couldn't eat much because of the acid stomach. About midway through, someone told me about Carnation Instant Breakfast drink, and that made all the difference in how I felt. Other side affects were diahrea and urine that burned terribly, skin peeling, toothaches. But the worst was just that tired feeling. The steroids made my heart pound and race and sometimes I felt so breathless that I thought I was going to die. But just when you think you are at the worst (about half way through) you begin back up again, and then it's time for the next treatment. It's doable. And some of the drugs are not as bad as others and girls seem to be able to go to work, etc.

Just be careful with this flu thing. Wash your hands a lot!!!!!

lissette80901 · May 2009

Hey Ladies!

I also started with chemo first. My tumor is in a cyst too, but not as large as yours. The cancer is 4cm but the whole things is about 4.5. I did my first 2 rounds of AC. It's a total of 4 every 3 weeks, then 12 taxol weekly. I work in an elementary school and even though everyone, including the kids, know about the cancer and how I have to stay away from germs, I get a million hugs a day. I just make sure to spray lots of lysol, wash my hands a lot and keep hand sanitizer very close by at all times. So far, it's working. I think it is important to start the chemo right away and to just take it one day at a time. I wanted to start to attack the cancer as soon as possible. I hate that it was just growing in me. I take off the day after chemo and then I am off sat and sun. Those are the days I feel the worst. Whenever I feel icky I just make sure to wash and wipe down even more. Good luck!

Lissette

lissette80901 · May 2009

By the way, don't worry about the being sick part. It's not too bad. I never notice how sick I actually felt until I feel better! lol.

jancie · May 2009

I had dose dense Adriamycin and Cytoxin (4 treatments total - infusion every 2 weeks). I am not following that up with Taxol (again dose dense - every two weeks - 4 treatments total). My 4 CM IDC tumor HAS SHRUNK! And it continues to shrink so I totally understand what your oncologist is talking about as far as shrinking the tumor because it does work.

I am a small B cup breast size and with a 4 cm tumor (smaller than yours) there was no way to do a lumpectomy and have any breast tissue left since the doctors have to get clear margins.

As far as side effects, weight gain, little nausea (never threw up) fatigue, shingles due to compromised immune system but that is not a normal side effect, inability to sleep more than 2-3 hours a night, no metalic taste but nothing really tasted good, definately lost most of my taste buds. I didn't have any mouth sores. I also didn't have any issue with burning while peeing BECAUSE for the first three days after infusion, I used baby wipes instead of toilet paper. The first time you pee after Adriamycin, your pee is pink in color and that is some toxic stuff so the baby wipes got rid of any toxic stuff left on my genetials. My biggest complaint about chemo is the fatigue and then when I got shingles and the fact that a lot of food just tasted like cardboard. Three weeks after my last infusion of A/C my taste buds started coming back.

I kept on eating healthy nutritional meals to help with my immune system, lots of fruits and vegetables and yes....I still ate the junk food here and there because it would put me in a good mood.

I wash my hands all of the time. I did get a cold but that is only because my hubby had it for over a month so I knew that I was going to get infected by him. I did avoid any large crowds if at all possible. I kept some sterilizer gel with me at all times and used that each time I got in my car after being out in public. Personally I wouldn't allow the swine flu or any other flu to keep you from doing chemo if that is what needs to be done. You want to go fater those cancer cells that are in your body. My lymph nodes came out negative for cancer but doing the chemo gave me some relief in knowing that any cancer cells that "could" have spread via the blood stream are DEAD!

lissette80901 · May 2009

Hey Janice, Good to hear about the tumor shrinking. Yea! Did you do the taxol? I'm wondering about the weight gain. How much did you gain? Did you stay active? Did you take steroids?

jancie · May 2009

Lissette - I have completed 2 rounds of dose dense Taxol and have 2 more to go. I did gain weight due to the steroids - about 13 lbs total so I went from a size 4 to a size 8. I am trying to stay as active as possible but am restrained due to joint pain from Taxol (2-3 days) and the fatigue I felt from the Adriamycin and Cytoxan. I have to take a total of 20 mg of steroids the night before infusion and another 20 mg the day of infusion. On top of that they put steroids in the drip. I can't wait to get off of chemo so I can actively walk every day and get rid of this weight. Right now I can just look at food and gain 5 lbs.

lissette80901 · May 2009

Thanks Janice! Not too bad. 2 more rounds to go. There's an end in sight! I am doing a lower dose of taxol. 12 rounds weekly and keep hearing horror stories. The AC has not been bad so far. I have round 3 this week. I just went for a 3 mile run today and I feel great. I still work out. I hate the not knowing part since I keep hearing everyone's different. I was excited to hear your 4cm tumor shrank. I'm hoping mine will too. They say if it shrinks then your chances of recurrance are lower. My fingers are crossed!

waycross48 · March 2016

I have been doing some research for a friend who has breast cancer. I read a medical study about the 16 week chemo, as this is what my friend is currently on. It states that the results of the 16 week regime are very good. That giving the doses on this plan, patients suffered fewer or at least more controllable side effects. The overall outcome for patients was very positive. I hope this helps explain the chemo plan you are on. My friend is having this, then surgery, then another round of chemo and radiation. She has lymph node involvement so hers is not encapsulated like yours. Good bless you and I pray for a wonderful outcome.

16 Rounds Of Chemo before surgery?

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