Starting Chemo Soon. SCARED! Lot's of questions!

Kelly5757

Hello Ladies,

 I have been lurking and learning for a while now. I'm 57, premenopausal though I had a hysterectomy at 29 they left my ovaries and they are still producing very high levels of estrogen.  I had a diagnostic mamo and ultrasound on 2/26/14 BIRADS 5 susp. for cancer 1.5 cm. tumor. 3/7/14 I had a core needle biopsy, dx below except they were still saying approx. 1.5 cm. 4/4/14 I had BMX no reconstruction and none planned at this time. I told them it was growing I could feel it and I was told that cancer doesn't really grow that fast. Well it has turned out to be 3 1/2 cm x 3.0,  stage II, high grade, they found DCIS and Pagetoid Spread, the 3 nodes taken were clear, and my right breast was fine. My cancer was painful that's how I found it. I have been to genetic counseling as I have a VERY STRONG family history for breast and ovarian cancer. I have been to my Oncologist and the plan is chemo, Taxotere/Cytoxan. Zofran & Compazine for nausea & vomiting. Decadron steroid to help prevent side effects and Neupogen injections for five days following treatment to stimulate white blood cells. Tamoxifen afterwards.

NOW THAT I HAVE GIVEN BACKGROUND I HAVE QUESTIONS...

Does this sound like a reasonable treatment?

Has anyone had this same chemo combo and how did you do during and after treatment?

What does Second Generation Regimen mean and why would that have been chosen for me?

My understanding of Pagets Disease is cancer of the nipple. Can someone explain to me what the Pagetoid Spread is, and can it also met. through the bloodstream?

I asked onc. about the Oncotype DX and she said we would do that if there was a question about chemo or no chemo to help make that decision. I feel like that even if my score was low I still would feel like I needed chemo. Is that test,that important to have?

I would love any complementry holistic remedy's as well.

I guess I will start with these questions for now. I appreciate all of you and what you do on this forum. It's been a blessing to have this resource. I thank you for any input.

lintrollerderby

Hi Kelly. Welcome and I'm very sorry that you have reason to be here. I will do my best to answer your questions. What was the result of the genetic counseling? 

Yes, this sounds like a reasonable treatment plan that you were given. I also had Taxotere and Cytoxan. I had Decadron the day before, day of, and day after chemo. I was given Zofran and Phenergan for nausea (I'm allergic to Compazine). I had a Neulasta injection 24 hours after each round of chemo. This drug is very similar to Neupogen; they both stimulate white blood cell production. For me, this drug was worse than the chemo itself as far as immediate side effects. I had significant bone pain from it. Long term, however, the chemo left me with some permanent side effects. That's ok, and I would do it again, but I'm a big believer in knowing the possibilities from specific treatments. 

Chemotherapy regimens evolve over time as studies are performed and survival benefits are analyzed. There are first, second, and third generation chemotherapy regimens for breast cancer. Which regimen a patient gets depends on factors such as the preference of the oncologist and the specific cancer that is being treated. 

I'm sorry, I don't know about Pagetoid spread. Perhaps someone here can elaborate. I only know what it is at the most basic level, but not how it applies to your diagnosis.

I also can't answer about the OncotypeDX test; my cancer was Triple Negative, so no Oncotype was performed as chemo was a certainty for me. 

I'm sorry again that you find yourself needing to be here, but I'm glad you found this site. Please feel free to ask questions as you think of them.

Best wishes.

Kelly5757

lintrolerderby... Thank you so much for your answer. My genetic counsler wanted to see my Mom retested since it had been the early 90's. She was dx with breast cancer at 39 yr. and has NHL now. The conclusion of this was because of my Mom's NHL her blood is tainted and would not be able to test it. They have ordered a large panel on me and it's in review with my insurance. The results of this test panel take 3 or 4 months and would not be a part of my treatment decision now.

May I ask what your long term side effects are?

Thank You for the welcome & your kindness

Many Blessings

Kelly

doxie

Kelly5757,

I had the Oncotype run on my tumor to see if I needed chemo because I was clearly on the borderline for it. If both you and your oncologist are certain you need chemo, then the test isn't necessary. It takes 2-3 weeks for results after getting insurance approval. With grade 3 and the size of your tumor, it's unlikely a low Oncotype score would occur. This is especially true if your ER and/or PR are at low % positive. Even though I was very high ER+, my 5% PR+ pushed me into chemo.

It might be helpful to go to the Chemotherapy forum and join the current chemo group. It also helps to read through an earlier one. This was very helpful for me. There is also a forum for Less Common Types of BC where you may find others with Pagets.  

Sorry you have to join us.

ladyboss1997

I had the exact same regimen, and I went through it with flying colors. I did my chemo on Thursdays, had my shot on Friday, and rested all weekend. I went back to work on Monday after chemo. I gave myself a break from exercising for a whole week after chemo, then began exercising again until the next cycle. I really believe that continuing to exercise during this process made a large difference in how I felt. I never once got nauseous, but I took my nausea medicine every 4 hours for the 24 hours after each chemo. It is also very important that you drink 10 glasses of water a day. You want to flush the body. I started losing my hair in droves about 12 days after the first chemo, so make sure you are ready for that. I bought my wig way in advance, and cut my hair very short. My oncotype was right in the middle of the moderate risk. I have not regretted for one moment doing the chemo. My entire treatment was 6 months from day of diagnosis to completion of radiation. Just a small bump in the road of life . . .

Diana     

Kelly5757

Doxie & ladyboss

Thank you for the advice and input. I appreciate it very much.

Does anyone know what the majority of women do about their hair. I'm not to worried about that part, I have read some shave it before it starts to fall out and others wait until it does.

lintrollerderby

Hi Kelly,

I'm sorry that your mom had to endure NHL as well as breast cancer. Please let us know how your genetic testing goes.

I don't want to to alarm you or anyone else who reads this. I almost hesitate to post it because I don't want to inadvertently influence anyone from undergoing treatment that could save their life. I was one of the unfortunate ones who experience late effects from chemotherapy. Chemo caused joint damage for me. I've been on a pain management regimen since just after my first round. I have some peripheral neuropathy from the Taxotere. It's not horrible, but it bothers me from time to time. I have sensitivity in the nerves of my skin that causes discomfort when something rubs me. Pressure is fine, but rubbing, like if my husband were to give me a massage, is something that I can no longer handle. I had and continue to have some cognitive problems from chemo. Many people get chemo brain, and I did, but it never really went away. It affected my short-term memory and word recall. It created an almost ADD situation for me that includes fatigue. Blech. I have a moderate amount of hearing loss, but it's not too bad. In spite of the issues from chemo, I would do it again if needed. Please keep in mind that most people do not have as many issues from treatment as I did. As Ladyboss above mentioned, she also had this regimen and sailed right through. But, I'm a big believer in informed consent and going into a situation with your eyes wide open. 

Kelly5757

lintrollerderby,

I appreciate you sharing. We all know about the potential side effects going in, it's just nice to see a variety of womens experiences. When the onc. nurse handed me the sheets with the side effects on them she said here are the possible side effects but you don't really need to read them as I might not even have any. She does not know me. I'm a eyes wide open kind of girl as well, if you tell me not to read something then thats probably going to be the first thing I read. 

I'm so sorry that you have ended up with so many long term side effects. That's what I'm most afraid of. If I didnt know these side effects could happen, then if and when they did happen, it would be even more frightening. Again thank you for sharing.

Many Blessings

Kelly

lintrollerderby

Thank you, Kelly. I hope you have no yucky side effects and the treatments are all kind to you while doing the job they're intended to do.

Warm Regards,

Betty

AmyQ

Hi Kelly, 

First of all, I'm sorry you are dealing with this and yes the worst part, at least for me, was the unknown.  I had 5 rounds of Cytoxan and Taxotere I was suppose to have 6 but my cancer responded completely after 4 so opted for the 5th infusion.  Anyway, I had the same pre and post drugs you will be getting and had no adverse side-effects.  In fact the steroids made me feel like superwoman!  I was ready to take on the world, but funny thing, I had no troubles sleeping even with all that energy.  I did not lose my hair as I used Penguin Cold Caps - actually I lost hair but only about 1/3 of it.   I had a wig on standby if needed but I didn't. I did lose 4 toe nails many months post chemo and my eyelashes and eyebrows but other than that, no one would know I was going through chemo.  I had very low energy by the 4th day but improved and got stronger every day after that. Good luck to you.  I hope you do well and before you'll know it, it will be behind you.

Amy