so now it's chemo and bilateral mastercomy

Cantbelievethis

Hello. As I posted in a previous message, I was freaked out after the path report from my lumpectomy showed the tumor to be 2.7 cm, after all the mammograms and breast exams, and ultrasounds, it still go this big. No lymph node involvement and no LVI, thank goodness.  I consulted with several doctors who I respect including the doctor who read my mammograms. They all said my breasts are so dense and lumpy that it is very difficult to read imaging. They all recommended a bi-lateral mastectomy. I'm going to do that, even though MRI's may catch it earlier I want the least chance possible of ever going through this again. The oncotype test came back 19, low intermediate, even though it was grade one. I'm going to do the chemo so that I know I've done everything possible to increase my chances for long term survival. Plus, it will likley send me into menopause so I can start an aromitase inhibitor sooner, which was the topic of my previous post. I'm at peace with the decision I guess, though I get hit by moments of WTF is happening, this can't be me we are talking about. I start chemo in early August and mastectomy in December after I heal. MRI pending to make sure nothing else is lurking. Anyway, I'm kind of numb right now so nothing to really ask, but I know I will have questions so I thought I would give the update. Oh, one question, I want to stay as active as possible, is it really possible to jog or run while on chemo? I usually run about 2 miles every morning, not a lot but it makes a difference. I actually want to make it my plan to increase that when this is over. Is it still realistic to run? What did you use as headwear, I just can't run around my neighborhood bald, I just can't.

MsPharoah

Cantbelievethis.....So sorry you find yourself here! Hugs to you. I was active and worked/exercised every day while on chemo, but everyone is different, so make sure you reduce your activities without guilt, if you need to. I am not a runner, I am a power walker, but if you are highly conditioned to running, you may very well be able to maintain your schedule. When I power walked, I used what is called a "hat with hair". It is a baseball cap with a hairpiece sewn in. Most wig shops have them and you can get them on line. Different hair color and lengths. I had several beautiful wigs and quite frankly, I never had a bad hair day! Wigs are quite beautifully made now in all styles and colors, so most people can get a wig that is like their own hair pre-chemo. Lots of people cold cap to save their hair, but I am glad I did not do that because once I started chemo, my hair became dry and lifeless and pretty darn ugly....saving it would have been crazy.
Good luck to you. MsP

ThePrincess

Sorry you are here - I ran though the 8 weeks of AC, no problem - keeping up 4 miles per run!

The weekly taxol is giving me trouble though - by taxol #5 I'm down to about 3 miles on a MUCH slower pace and last week had trouble going more than .25 at a time (walking break for a small time) - this week is better ( I took a week taxol break) and I am determined not to have a bad week like last week again - KBeee is also running, she did a 5K in the HEAT last week and she's at taxol #10!

Good luck!

Cantbelievethis

Thanks. Does the type of chemo make a difference? I'm going to be on taxotene and cytoxin.

ElaineTherese

Cant,

It's hard to say how ANYONE is going to react to a given chemo. I felt that AC made me spacey and slowed me down. Taxol/Herceptin/Perjeta gave me mild diarrhea but I felt more energetic on it. I do think the taxo- chemos have a reputation for producing gastrointestinal issues, but YOU might not develop them. I did work through chemo, and managed to swim twice a week during the five months. Good luck!

ICanDoThis

Can't

CT is also called "chemo lite"
Really glad your doctor is minimizing the bad SEs of chemo (Adriamycin is mean to the heart), while still meeting your concerns.

Jackbirdie

@Icandothis- could I ask you where you read or heard Taxotere/Cytoxin is chemo lite?

While gratefully not including Adriamyacin, which does indeed have permanent heart damage issues, there is nothing much worse than Taxotere.

You may be confusing Taxotere with Taxol, which I have read here on bco is 10 times LESS TOXIC (than Taxotere, though dosing would have to be taken into consideration).

I am not a doc, or a nitpicker by nature, but CT is most definitely not chemo lite.

Cytoxin is also sometimes confused with Carpoplatin, also not as toxic.

I would really appreciate knowing where this misinformation us coming from. People need to make informed choices

Spookiesmom

I had 4A/C. Was supposed to have 4 Taxotere. Was supposed to be "easier" to tolerate. One round and done. Not easy on me.

tonia52

cant, the taxol is very doable. The main thing is intestinal problems. I requested a prescription strength of nexium and it worked so much better than the over the counter product. Also the steriods kept me up at night and I started ambien. It has given me a very good night sleep and I wake feeling good and refreshed. I am able to work out. I'm not a runner but love Zumba and dance fusion as well as power walking. You are going to do great. Best wishes and prayers to you.

282go

Don't do it.  Same diagnosis, but smaller tumor.  You can fight this naturally w/o taking such drastic steps.  Give yourself time to research and review your options, but bottom line, trust your gut instincts.

I'm guessing you wouldn't have posted to this site if you didn't have some doubts about going ahead wit such radical treatment.  You won't die within a week, or even months, and perhaps not at all from breast cancer...just take a breath, calm yourself, and trust in all that is good and healing to guide you.

My very best wishes for your health,

Tina

282go

Sorry, but just me again...after rereading your post, I really believe you owe it to yourself to rethink your"comfortable with" decision.  Please do more research.  I'm in the huge cloud of research studies and info available online, and can only tell you there are other, safer, natural treatments available to us, and according to test results, offer benefits equal to mess like tamoxifen w/o the toxic effects of those and other chemo drugs.  Radiation therapy is also overused.  In my case, just the radiation from mammograms, annually over the last 20+ years, may have been a significant cause of my developing breast cancer!  So the simple logic of treating cancer with cancer-causing, heavy dose, near daily, radiation therapy escapes me!  It, like chemo, only compromises your immune system, which is the one thing that needs strength to defeat these out-of-control cells forming into cancers!

I can't believe this was the advice from your MDs.  But I'm not one an MD. But please know, I do care about you

clarrn

I think your decision is wise. In case the above poster makes you worry here is a relevant study done by actual doctors. The above advice is extremely dangerous. I only share this information because I care too.

http://www.wjso.com/content/10/1/118/abstract

https://www.sciencebasedmedicine.org/rejecting-can...

I don't want this to digress into a debate, but I don't want you to reverse your wise decision.

dltnhm

Dear Cantbelieverhis:

Second things first. The poster urging you to "not do this" stated that her diagnosis is the same. From reading your description, you would be staged at IIa based on the size of your tumor. She does not have the same diagnosis. Full disclosure - neither do I.

First things second. I was able to continue running throughout my chemotherapy (also fast paced walking when I walked) - AC 4x's over 8 weeks. Taxol 12x's over 12 weeks. I was fortunate to go through my treatments with relative ease. I see you will be on another regimen if you continue with the scheduled chemo. I cannot personally speak to that particular regimen. My oncologist encouraged me to do whatever I felt comfortable doing and she and was very supportive of my running.

Chemo started in the Winter for me (and I had hair in the beginning too) so I wore (as I always did/do) a ball cap with/without a fleece head/ear band when it was cold. We did have some unseasonably warm weather in March that year and since I chose to go wigless & hatless period, running that way was not an issue for me. In the hot weather I wore a sweatband or bandana twisted and tied around across my forehead. Regardless of the season - I made certain to slather on the sunscreen on my head & into my new hair as it grew in (which it started to do during my Taxol treatments). Please do what you are comfortable doing - just know - people are very supportive. As you probably know already, runners are a community - accepting of one another despite our differences. Cancer doesn't change that!

Regarding chemopause .... I have not had a period since my first chemo treatment. 3 years 5 months. I was not headed toward menopause based on my hormone levels tested and had no physical symptoms pointing that way. I was 48 years old. My oncologist started with the "wait and see if your menstrual cycle remains stopped for 2 years and if so we will check hormone levels". As it stands my estradiol is menopausal but my FSH & LH are still very much NOT. Therefore, I am still taking Tamoxifen until those numbers change or until something else changes where I'd opt for suppression & an AI.

There are others on this board whose doctors go with a cessation of menses for a time period and some do not even test the hormone levels. They go to an AI. I prefer my oncologist's plan.

If you Google "chemo lite" you will find some interesting and varying hits. Bottom line is no "light" breast cancer chemotherapy protocol. There has been interesting research on patients who are prescribed less than standard dosage, or depart from the standard schedule or stop before complete protocol is given. This has been referred to as "chemo lite" in some articles referencing studies. The retrospective studies show that doing this ends with a decrease in effectiveness of the chemo compared to taking it the way it is intended to be taken. Sometimes, this is the best that can be done for some with comorbidities, allergic reactions, or strong negative side effects.

Hope this is helpful!

Diana

Jackbirdie

great post Diana:

I did 6 rounds of Taxotere plus Cytoxan. I made it through and have no regrets. They do a much better job of managing side effects these days.

Cantbelievethis

Thank you all for your replies. To 282go, thank you for your concern, but I actually was not posting because I am in doubt about the decision, just for support and to find out other people's experiences. I hate the decision, but I do in my gut feel it's the right one. If I had a very small stage one tumor such as yourself, I likely would not be considering chemo. But even though there was no lymph node involvement and no LVI, the size of the tumor gave more opportunity for some undetectable cells to have escaped. I'm doing the chemo to maximize my chances of a long and healthy life.

It's good to hear that running is still a possibility. i'm not really a runner by the way, more like a jogger, 2 miles a day is about my max. I'd like to try to keep it up through chemo if I can, and increase it afterwards. Maybe try to run a 5K or even work up to a 10K when all this is done.

Beatmon

I

I've called what I'm on for life now....chemo lite! Herceptin and perjeta, but done with taxoterrrible! But trust me,myou can still have SE from H&P without any of the Taxanes

mdg

Sorry you find yourself here with us, but you will get through this. I also was very active before dx...I am a fitness instructor and exercise daily. I did workout 5 days a week through chemo for about an hour each time. I opted to do cold caps to keep my hair through chemo and they worked for me. I returned to teaching aerobics 4 weeks after completing chemo and my class never knew I had chemo....I still had my usual pony tail and looked the same to them. Good luck! You can do this!

littleblueflowers

Hey there! I bet you will be able to keep jogging! I did- almost every day during 16 weeks of dose dense ACT. To cover my head, I do the bandana under a ball cap thing. You definitely don't want to sunburn your head! You can do this!