Starting Chemo in May 07

Virginia, I've lost my share of posts, too. Now, before I hit the "Continue" or "Submit" buttons, I highlight the text, go to Edit and Copy it. Then if the text disappears into a great black hole, I just Paste what I saved. Yay!! (Learned this from another lady on the boards.)

I hope I didn't freak anyone out talking about mortality, etc. This *is* my second time through the process, so maybe I have more dark thoughts.

I'm 49, and got my first diagnosis in 2005. It was a pretty big tumor in my left breast, 4.5cm, so I opted for a mastectomy. For some reason, I was more leery of the radiation than of the chemo. So that played into my decision against lumpectomy. Finished chemo (dose-dense AC x4, Taxol x4) in mid-January 2006.

Reconstruction was expander/implant on left and reduction on right. I was seeing onc every three months for follow up, with mammos every six months. In April, mammo found a small nodule in right breast. Thought it might be fat necrosis or scar tissue from reduction. Nope, it's cancer.

But it was a different type of cancer than the first tumor, IDC instead of medullary. Since my breast tissue appears to be fertile ground for cancer, I had another mastectomy, with expander and eventual implant.

My chemo this time is weekly Taxol/Carboplatin. I got my seventh of 12 treatments today. I go three Fridays in a row and then skip one. I'll be done Aug. 31. I'm worried about my fingernails. They are just tender and numb now, with the occasional ZAP of a shooting pain. But they're not lifting or gooey, so maybe I'll hang onto them. I didn't lose any in 2005. Fingers crossed!

Cindy in MN, I just wrote a long email and lost it after reading your advice about saving the text just in case. DOH! Anyway, I'm really interested in what you thought of the reduction and how it compared to the mastectomy. I'm sure you'd rather have the breast than not, but was the reduction a separate surgery? Was it hard to recover? How was the scar? I'm wondering because I'm trying to decide between a double mast and having a reduction on the good side. I'd love to hear more about the experience. I'm a DD right now and there's no way I want an implant to match that.

Virginia, Thanks for explaining about the treatment plan. I don't know much about the her2+.

I'll have to catch up tomorrow, it's midnight.

Hope everyone had a good day. I had my MRI today so now I have the wait for results. Tick tock.

HI ALL,
Wow its been a long time since I posted. I am pretty much settled into the new house. My daughter is still visiting but she goes back to her dads tomorrow.
I had another treatment on Monday and today (Saturday) is the first day I've felt like doing anything. I do have good news. I only have 2 more treatments. I should be done by August 13. WOOOHOOOO I'm excited.
I'm on cytoxan/Taxotere and my nail beds get sore the day after treatment. My onc told me to be carefull not to snag them because they are weak so I cut my nails shorter than normal, dont want to rip off a nail or something. I was told with the taxotere the nails could turn yellow get ridges and fall off. I'm hoping they dont since I'm almost done.
I have not completely shaved my head and I still have hair. It does thin a little more after each treatment mainly on top. Pretty soon I'm gonna look like an old man bald on top with hair on the sides just like my Grandpa Jess. LOL I know I need to break down and shave it so it all grows back in even but I just cant seem to do it.
I have had lots of fatigue this time. When I went in for my Nuelasta shot on Thursday my blood pressure was 100/66 or is it the other way around. darn chemo brain. Anyway they said that was pretty low and asked if I had been tired. Not sure what my blood counts have been, keep forgeting to ask my onc about them.
Ok this is a long post. I'll try and keep up better now that I'm back online.
CindyKS

CindyKS - welcome back! Glad to hear you're settled in...when you said you were moving in the middle of chemo my mouth dropped - power to you, it would make me curl up in a comatose corner

Good news on my end - through Blogher I found out about http://imtooyoungforthis.org/community/i2y_money.html, and through that site I found out about the Brenda Mehling Cancer Fund www.bmcf.net. I emailed them on Sunday, applied on Monday and last night they called with good news - they're paying my rent for August! (or nearly)

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Ok guys, sorry again to be so long winded. I feel like I have so much to tell all of you.....Virginia

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Don't worry about that. We don't have enough traffic on this list if you ask me. We are all anxious for you to share whatever you would like to share.

Amy, I don't know how you manage to take care of a family... I live alone, and when I was my sickest (last 2 treatments), I could barely hit the clicker to change the TV channel. Some weekends I didn't even get out of my PJ's or leave the house. I give you TONS of credit for even trying to go on a picnic!!

Oh, wanted to answer the question about the genetic testing... I haven't had it yet. All of my DR's want me to... My NJ onc, in fact, is pretty sure I have the BRCA gene. Anyhow, I have been just trying to get through the surgery and the treatment afterwards. I don't have kids, so it doesn't really matter in that regard... And I've had the cancer... The one it would truly benefit is my sister who has 4 daughters, but she hasn't wrapped her head around it... The onc has said that if I have the test, then they know what to test my sis for, and if she DOESN'T have the gene, then none of her girls will. My sister is freaked and doesn't know what she would do with the info (live life in fear or take preventative action...) She also doesn't want to scare her kids. Anyhow, my feeling is if at least she knows, she can be more aware with testing even if she doesn't do prevenative surgery. It's instances like this that the Big C REALLY pisses me off.

Oh, and I REALLY miss my hair!! I startle myself in the mirror sometimes. And, the funniest thing is my face is tan and my head is white... I look kind of freakish!! LOL

Feel better Amy...I was actually in your airport last week. I had lunch at Tami Longaberger's house! (It was a special luncheon for those "living with breast cancer." It was very very special and nice to meet people outside of a hospital environment who are going thru/went through what we have. I had my picture taken with Tami with my bald head! LOL Maybe I'll be in the brochure some day! HAHA!

Virginia

Hey Virginia,

The deal with my family is this. I have husband and 2 kids (ages 4 and 2) and I stay at home with them. BUT I also have the most AMAZING support network of friends through my church, and that is the ONLY WAY we are getting through this. When I have a tx (which is always on Thursday) somebody (it rotates who it is) watches my kids from 9-6 on THursday and Friday. Then Dh is home for the weekend, then more 9-6 childcare the following week until I'm ready to take it over again. This past week I had all-day childcare Mon-Thursday, and then a babysitter at the house 9-1 on Friday. On the rest of the weeks, a babysitter comes to the house or takes the kids out 2 days a week, 9-1, so I can keep my head above water with everything in the house. Add to all this, that there is a schedule of people bringing meals to the house M, W & F, May-August. Without all of this I don't know how we'd do it. Like you, I'm completely unable to function from the day of treatment until about the following Wednesday. I just lie on my side and watch DVDs on my computer, or sleep, or surf the web and type a short note to all of you. NO WAY I could do what a 2 and 4-year-old needs. So, I'm not the amazing one, it's all my friends. And some of them aren't even friends, per se, just people from my church pitching in. I don't even recognize names of people who brought the meal half the time.

All for now,

Amy

Thanks CindyMN for the info. It is a tough decision but I'm still leaning toward the bilateral. I still need to speak with my plastic surgeon to fully understand my options of course. But thanks a lot for explaining all of this.

Hey girls,

I'm home from church early--just couldn't make it any further past Sunday School, so dh brought me home to rest and went back himself. My temp is a little up, so I'm watching that. My normal temp is always low--about 97.6 or so, and right now I'm at 99.9, so I'm taking it every 30 minutes or so just to be safe.

Off to rest,

Amy

CindyMN - Botox? Do tell - how is it used? For pain mgmt? I still have to choose a PS and the whole process is...daunting.

Hi Liz,
I wanted to chime in on this one.
My little sister had cancer 10 yrs ago when she was 29 and a mastectomy of the left breast. She left her other one alone. Thank God....she has yet to have re-occurance in her right breast however, she is constantly worried about that. Every other mammo on the good breast is "questionable" so she's had like 7 needle biopsies since, not to mention the panic of re-occurance. And she is completely lopsided because she has one implant (perky) and one mommy boob.
When I got my breast cancer (dx 2/07 at age 40) I didn't hesitate to go for double mast even though, I was Stage II, node neg with no cancer whatsover in the other breast....because of what my sister has been, and is going through.
Turns out, we are both BRCA positive but, I made my decision without that knowledge.
I had expanders put in immediately after the mast and I will admit, I'm concerned about the scars and what I'm going to look like after but, at least I can worry a little less about BC coming back.
I did not have the botox that Cindy talked about but I'll be honest, the saline fills have been completely painless. I am still pretty much numb from the mast. I recovered from the surgery very quickly and honestly, other than a "thick and tight" feeling across my chest, I have had very little, if any pain. Although, the first week after did suck when it came to comfort because of the damn drains and that horrid atheletic wrap they put around you. But, I was drove myself to church after 4 days (I wore a flowing gypsy skirt and safety pinned my drains to my slip underneath, between my legs....lol) and was moving around with relative ease after that. (I did finish my sript of Hydrocodone after surgery but, didn't need to refill it....until I had Taxotere!)
One piece of advise though. My scars are long. My left is 7 inches and my right is 6 3/4. I went onto a website called FORCE that has quite a few photos of mastectomies and the scars don't look anything like mine. They are not near as long. Some of them looked as little as 2 inches.
I wish............I would have seen them before I had my surgery. I would have questioned my surgeon. I would rather have two scars (another little one to cut out the lymph nodes)then one great big scar that goes from the middle of my arm pit to almost the center of my chest.
Anyway, just wanted to give you my input. I wish you the best of luck no matter your decision.
: ) Traci

{{{{{{{{{{{{{{{{{{{{Amy}}}}}}}}}}}}}}}}}}}}

Pat

I cruised thru first 3 treatments of chemo (never vomitted!!) but Taxol -shit! cramps, electric shocks all down my legs, and pins and needles in feet, which lasted 3 months after finishing. In the end (after the 3rd treatment, and taking panadol!!!) I took tramodol(took a good day to kick in but magic stuff, although I burbled a bit) only took it for 3 days, as it is apparently very addictive.

Liz, I had a mastectomy on the right and reduction on the left. Actually, the plastic surgeon came into the surgery as the breast surgeon was completing the mast. and did the reduction right at that time. It worked out well because then I only had one recovery. I am happy with my reduction; sure wouldn't have been able to haul around a prost. big enough to match on the right so it was a good choice for me. I probably will eventually have a reconstruction on the mast side, but haven't decided for sure. I was very glad that I went and talked to the plastic surgeon before my mastectomy because it did change the course of my treatment.

Good luck with making your decision.

Debbie

I forgot - this is how fatigued I am: I ordered groceries from Safeway online! I figure I need to conserve my strength for things that matter, and grocery shopping really doesn't. Hey, and first order was free delivery! Yeah!

LeeAnne