Lots of Questions!!!

kcherub · 05-07-2007, 04:47 PM

Hi, there! I have been reading the board daily, and am so thankful that this is here! I have "spoken" with harrie a few times, and she has been so helpful! I apologize for the length, I have run a pregnancy loss website since 1999, so I know...

A bit of background on me: I am 34 (35 in two weeks), am married, and have one son (age 7). I found my lump on 3/22 during a BSE, and had an u/s on 3/23 and 3/26, with a core biopsy also done on 3/26. I was DX with IDC on 3/29 (Grade 2). I had my lumpectomy and SNB (4 removed) on 4/6. There was no node involvement. The path came back at 1 x 1 x 1.4 cm., clear margins, HER2+ (7.4) on FISH, ER/PR + (both 90%). I have met with two oncologists, and had a telephone consult with another, and got a clean CT last week. My blood work came back good (13.8 on CA 27/29), but after checking around, I am not sure how much credence I can give the blood tests!

The first oncologist (here in town) suggested AC-TH (6 cycles, 3 weeks apart), radiation and tamoxifen. I really struggled with the A and it's cardiotoxicity risks, and was set against doing chemo. I really liked the doctor, but he basically looked at my path, swivled around to his desk and plugged my stats into adjuvant online (which I had already played with EXTENSIVELY). I did some researching and found the TCH protocol. This site was a great tool for that protocol.

I made a list to send to the second oncologist (telephone consult), with some concerns past the cardiotoxicity. He said "chemo" but not that it had to be AC-TH. He thought that the TCH protocol was acceptable.

When I went to meet the third oncologist (who was recommended by two acquaintances who had used the practice, and also here in town), I went in with a defensive attitude already in place about the TCH protocol. I mentioned it, and he said "Okay. I knew that someone would come in one day wanting to do TCH for early stage breast cancer, so I have been waiting for you." I was a little speechless.

Now, I am confused on what to do. I saw the first oncologist on Friday (1, because I am too chicken to tell him I am going with someone else--he's really sweet, and 2, I had to get the CT results), he said that he would let me do TCH (if I wanted), but he felt that AC-TH was the way to go. What do I do?!? I want to make the right choice. I guess we all do, eh?

Also, I have concerns about chemo in general. I own a children's boutique (it is not possible for me to miss work for 4 1/2 months, but I don't have to be there every day), my son's emotional well-being during, and my future fertility. See, I have three embryos in storage. We did IVF to have our son (I have had two ectopic pregnancies, one in 1999 and one in April 2006). I do not want to destroy them, and I would not feel comfortable donating them (my first loss was awful, and I want to be able to use them!!!), and surrogacy is expensive! Has anyone here had a child after treatment?

I have been trying to compile a list of what you all suggest for chemo side effects. Mouth: Biotene mouthwash, Biotene toothpaste, prescription flouride toothpase, soft toothbrush; Eyes: prescription drops (what kind?), Hair: I am having an early birthday party on May 19, shaving included and got my wigs this weekend. My major concern is the RBC/WBC issue. Is there any solid nutritional things I can do to combat that? I am really, really, really worried about passing out. I had panic attacks for two years, and don't want to start that again! Funny--they just stopped in early March. I think they stemmed from an employee (she was 18) who was anorexic and died suddenly in late 2004. God, I sound like a total mess!!!

Okay, that is enough for now. In case you can't tell, I am a talker and a Type A!

Take care,
Krista

kcherub · 05-07-2007, 04:50 PM

I will also be doing tamoxifen. Not sure how long with the embryos in question.

Krista

LittleLegos · 05-07-2007, 07:53 PM

I had TCH recommended to me too. It was a very good argument for it. I was concerned about doing A and then H for the heart. We're too young to have a bad heart for years to come! One younger doc was hesitant, but said he would do it if I wanted. He likes waiting to see a clinical trial after the whole 5 years.

I ended up just doing Taxol and Herceptin. My invasive tumor was only .6cm and I was in the grey zone for doing chemo at all. This seemed like a reasonable alternative.

Feel free to email me more. You sound a bit like me. I had to research everything and I found such great info on these boards and www.youngsurvival.org too.

Good luck!

mindersue · 05-07-2007, 09:45 PM

Hi Krista,

Sounds like you've done your homework and are ready! I see a UCLA onc and he recommended TCH for me. I took Emend and Reglan (and infused Aloxi) for anti-nausea, worked great. My Carboplatin dose was reduced a little bit each time and eliminated for my final round due to low platelets. You'll probably get Neulasta for wbc and Aranesp (or Procrit?) for rbc. Nothing can be done for platelets, though.

I had chemo on Thursdays and was worthless over the weekend. Felt better by Monday, but had zero energy. Each day that passed I gained energy and by one week after chemo I was walking for exercise and feeling much better. Hopefully you can will be able to work a little bit between chemo rounds.

The only other things I'd add to your list of stuff to get would be a good scent-free moisturizer and a good lip balm.

One more note, it took about a year after my last chemo for my rbc and platelets to rebound back to normal. Still waiting on my wbc. I can't speak on fertility after chemo. I've been blessed with two kids (now 11 & 9) and won't be having anymore. My son was 7 when I was diagnosed. It was difficult for him, things just weren't normal. The hardest part for him was my baldness.

Wishing you peace, love and strength as you fight this. I hope you'll keep us updated!

-Mindy

Mary Jo · 05-08-2007, 04:13 AM

Good Morning Krista,

It was recommended to me to do A/C + Taxol along with herceptin when I was diagnosed almost 2 years ago. However, I was hormone receptor negative so I'm not sure if that plays a part in the decision factor. Just to ease your mind a bit, I did not miss that much work when I went through chemo. A few days after each chemo treatment but that was about it. Chemo affects each of us differently and until you go through it you will not know how you will be affected. I will make a recommendation to you though - drink LOTS AND LOTS AND LOTS AND LOTS of water. I drank water a good 24 hours before chemo like it was going out of style. I drank on the way to chemo - during chemo and really drank after chemo. I envisioned the "crap" in my body being pee'd out of me. I never had to be 'hydrated intervenously and felt pretty good throughout chemo. My mouth was a little sore but I never had mouth sores. Possibly keeping my mouth clean with all the water helped? Not sure BUT I strongly recommend drowning yourself with water. I believe that truly made a difference for me

.

Good luck to you in your decision process.

God Bless,

Mary Jo

Becky · 05-08-2007, 06:05 AM

Both are very good regimens. Almost 3 years ago one did not have a choice. The standard of care was AC followed by Taxol (then if Her 2 - with Herceptin added). However, last year's ASCO (june, 2006) showed that TCH was just as good as AC followed by TH in preventing recurrence AND - it had reduced heart toxicity AND reduced the rare side effect occurence of secondary leukemia (most like due to Adriamycin).

So - especially for stage 1, TCH may be the wave of the future because of effectiveness plus it is well documented that a taxane (ie: Taxol, Taxotere, Abraxane) greatly improves lack of recurrence and disease free survival in Her2+ women (regardless of hormone status).

Hope this helps.

kcherub · 05-08-2007, 09:33 AM

Thank you so much, Little Legos! I am confident with the TCH, and it makes me feel better that others seem confident with it, too!

Young Survivors is a great site!

Take care,
Krista

kcherub · 05-08-2007, 09:37 AM

Mindy...thank you for replying! I sell infant care products in the store, so I will take home a few bottles of moisturizer!!!

Funny--my son keeps asking when I am going to be bald! He thinks he is excited about it, so I hope he won't change his mind when it happens.

My oncology nurse said that they don't premedicate (or the day after) for blood issues. I think they wait until there is a problem. Does that sound right? Should I push for taking the precaution, or is that even done?

Take care,
Krista

kcherub · 05-08-2007, 09:39 AM

Thank you, Mary Jo! I had read that drinking water (or sucking on ice chips) during treatment can help with mouth issues. It's good to hear from someone who that might have worked for!

Take care,
Krista

kcherub · 05-08-2007, 09:41 AM

Becky,

I have read a lot from you on the board, and am so glad you replied to me. I actually found the ASCO papers and then went from there. I must have printed out each citation for the 2nd oncologist and then didn't even need it!

The first oncologist told me that AC-TH was the "gold" standard, but isn't it really that it is just a standard they have been using for a long time? Who knows, maybe TCH will be the next "gold" standard!

Take care,
Krista

MJo · 05-08-2007, 11:03 AM

AC-TH was the gold standard when I was diagnosed in October 2005. If ASCO considers TCH just as good, that's wonderful news. I am glad that women today can avoid the Adriamycin. It's a particularly harsh drug, although it saved a lot of lives before alternatives came along. There is so much going on in cancer research that I am not surprised that things have changed in less than two years. Nobody can make the decision but you; however, if TCH is considered as effective as AC-TH, I know what I'd do if I had to do it again (And I never will!)

kristen · 05-08-2007, 11:19 AM

Hey Krista
I got TC-H 3.5 yrs ago and your so far ahead of the game then I was back then. Your informed and you ask a lot of questions, that is so powerful to your treatment. You will do well. Keep asking here and everywhere and listen to your gut and you will get through this. My kids were 7 and 8 when I started this and the one pc of advice that always stuck with me was to be straight with them. Don't let the neighbors now more then them. They were scared and brave and you'll be surprised how strong they can be. Of course I told them I would be alright, and I am.
Best to you Krista,