Starting Chemo in JAN 2007

Nancyab

My BC was in the upper quadrant of my right breast, thing is I could see it! Mostly when I bent over drying off after a shower I could see an area that looked different. I was scared to even touch the area and asked my DH who BTW is Jeff, to tell me if if was a lump. He confirmed it and I called my Dr's office for a mammo appt. It was a week later that they called and sent me to the "SUPER" mammo place as I called it. there they did more views and an ultrasound. I was crying the whole time, My Dh and MIL were with me. Then I was sent to a B S " a women who was spectacular" She did the biopsy right then, but I had to wait the weekend for results. Nov 20th a day I'll never forget. I had called Jeff home from work because I wanted him with me when I made the phone call, My daughter was here and my MIL . When I got the news I was told I had IDC and DCIS, I fell to my knees, my daughter ran outside crying screaming she for her sister ( who lives in Tucson) My MIL telphoned her for Laura, I hated seeing my 18 yr old so upset and I felt helpless, it was awful! Jeff then called my sister who came right away, I told her I didn't want to die like our Mom. She held me most of the evening. Even though I knew I had cancer hearing the words was a nightmare come true. The reason I was so terrified was because you have to understand I took care of my mother in 1988- 1990 as she battled mestatic bc. My BC education consisted of how it was back then and it was no where near how the care is today, but I didn't know that. Thank God strides have been made! I had both my breast taken because of my mom's history on Dec 6th along with 19 lymphnodes and you all know the rest of the story.

meliaanne

Good Morning All,
Mel, hope you are feeling well. Every day gets a little better. Hopefully you are home, and that really helps. We are all thinking of you.

Taxol 8 went fine, esp because I slept through most of it. Still in bed by 7:30. TPPJ, thanks for the encouragement. 4 treatments sounds doable; the thought of 12 originally had me on my knees, got to tell you. But it will be over 4 wks from today, hair / white ugly fuzz is coming back, eyebrows verrrry slowly, I am seeing glimmers of my old life hiding out there.

Stories of who and when to tell interest me. Thanks all. I don't think I would change anything about who I told except Steve's family, and he needed their support. He is their prince and they are a big part of his life, plus the kids wanted them to know. And it isn't all about me, it has impacted all five of us. Still am glad I didn't tell acquaintances and co workers. The time at work being treated normally is nice, plus the bosses knowing helps in terms of leaving early on Wed for taxol, etc. My job is very project oriented, so if I have a bad day and get less done, there is always tomorrow. If I worked on a team, it would be harder. I know my work situation is unique; there are other jobs within and outside my company that I could not have done, so don't view myself as extraordinary, just lucky. Teaching, for example, would be impossible, with the physical and emotional demands.

Ok, everyone have a good day. Stay strong.
Melia

NOLONGERREADINGORPOSTING

Hello All,

It has been fun reading about everybody's stories about how they took the news, and how differently it impacted some of us. I think I was more afraid of chemo than I was of cancer. I thought I would die in chemo.

Then, last night when I couldn't sleep I woke up and saw the news about Adriamycin. *I WAS THUNDERSTRUCK!!!!!* I was scheduled to take adriamycin and read a lot about it and it terrified me, especially the fact that it could do damage to the heart. I'd had problems with arrhythmia (that were cured with ablation in 1999) and believe me I did not want to go back there for *anything* even BC.

As the time got closer & closer to chemo I got more and more tense. I couldn't sleep. I called oncology and developed a relationship with a wonderful nurse and described my fears to her. She tried to allay them. I made a friend here on the boards, Holly, who shared my concern. One day she found an article about taxotere and sent it to me, suggesting it as an alternative. I called my nurse again and described the problem to her, and she agreed to discuss it with the doctor. It was just two days before I was scheduled for my first infusion, and I was ready to call it all off! But by the next day she had straightened everything out, and my regimen was changed from AC to TC. And I am so thankful, because I did get some damage to the heart and I know it would have been so much worse with AC!!!

And now we find out that adriamycin isn't effective. This blows my mind!!! I am wondering how this is affecting the rest of you?!!!!!

Mizsissy

robertin

OK, I read most of the messages, but I guess I missed the one about Adriamycin. So, it isn't effective? Well, since I had it, I should feel cheated, but I work with statistics all day long, and you can prove and disprove anything with statistics, and so I'm not going to let this affect me. Honestly, in retrospect, I'd rather have 8 sessions of AC than 4 of AC and 4 of Taxol. Taxol was a breeze compared to AC, however, I hate the side effects. I'm still struggling with neuropathy, it "woke up" my Hepatitis C and who knows how that will evolve, my nails are hurting, and so I'm not happy with the Taxol treatment. But it's behind me, and I keep reminding myself that one day everything will be back to normal.
My BC adventure started on December 8, when I had a second mammogram. I've had those before, but on the way to the hospital I thought, "if there ever was a good time to have cancer, now would be the time." My daughter had moved home to finish her schooling, and my husband works long hours with a 2 1/2 hour commute. After the second mammogram I was told to have a sonogram, and I knew something was wrong when the technician got out the ruler. He told me that I would be called within the hour, so I went to work. My doctor called me and told me I had a lump. She recommended a certain surgeon, and told me that the surgeon's nurse would call me to make an appointment. I told her that I was leaving for San Francisco on Sunday (this was Friday). So, at 3:00 I got a call from the surgeon's nurse, who asked me if I could come right now. I told her I would. So, I called my daughter, who met me at the surgeon's office. The surgeon had just come out of all-day surgery, but because of my trip, she wanted to see me that day. She had sent the receptionist to the hospital and by the time I arrived, the receptionist ran in, out of breath, with all my mammograms. The biopsy was done right then. I love this surgeon, she's my age and so good. She did a needle biopsy on a sentinel lymphnode, did the biopsy on my 2.5 cm lump, and told me that from the sonogram, it looked malignant and aggressive. She told me that I would need surgery, then chemotherapy and then radiation treatment. She did not think the cancer has spread to the lymphnodes. She also did not think hormones were involved. So, that morning I had the mammogram, that afternoon I knew I had BC. I was so glad that I didn't have to wait. That night we went out to dinner, because I didn't feel like cooking. I'm deeply religious and I felt that I was "warned" that morning. In this whole adventure I've never felt angry, but I have felt blessed. Unpleasant things happen, so I just try to make the best of it. I have announced it to my friends and co-workers. I wanted to warn them that mammograms and physicals are important. And in turn they have supported me and helped me along the way.

meliaanne

I read the report on msnbc re adriamyacin. I think we need to remember that it is an excerpt, it is one study which has not been verified or peer reviewed, and that a has been used for 18 yrs with good results ... not that it is the only way to go, and not that it doesn't have nasty downsides which precludes some from using it. But we all made the best decisions we could at the time, trusted our doctors, and will all turn into raging alcoholics if we second guess it all now. At least I will! New treatments will come along, which will be better, and will hopefully help further generations of women. But we did and continue to do what we felt was best ...

Anonymous

I have very mixed feelings on the adriamycin "news." First, it's not just "A" but the whole class of drugs that A is in, which includes Eprirubicin (what I had).

Also, the research has yet to be peer reviewed or published and as we all know these things don't always turn out in the end the way the researchers expect them to. The article didn't say they are not effective, but that it is possible that they are only effective for 8% of women. Well, before I was diagnosed there was only a 6% chance I would get cancer. So maybe we are in the 8% who knows? At this point there is NO test for who those 8% are – so there is no way to know.

Let’s just say the A or E didn’t work. Well, I’m assuming the C (or F&C for FEC, or C&T for others) DID work. So even worse case, we didn’t waste our time and endanger our bodies with chemo for nothing.

When I first heard this on NBC News I freaked out a bit. But now that I've had a chance to reflect on it I am back to remembering that we all (and I include our doctors in this) made the best decisions we could given the information that we had at the time. I made the choice to participate in a clinical trial. I don’t regret that.

For the rest of our lives there will be a steady stream of cancer research and new findings. I'm sure many of those will bring drastic improvements to cancer treatments. That means that the treatments that any of us had and/or are having may someday be viewed as out of date and antiquated in the same way we look at the way bc was treated for our mother's generation. This is good. We can't and don't want to stop progress and new research. But it's hard, and painful, to hear that what we chose might not have been the "best" thing. I am trying to accept that over the years the “best” thing is going to be ever-changing. Since we can't go back and change it I have to try to make peace with what I've done and hope for the best moving forward.

So that is why I try like crazy not to read research that doesn't pertain to any future treatment issues. Otherwise, as my 3 year old would say it is just “too scary for me.” Now I’m all for researching things BEFORE I make a decision, but after the fact I just don’t see the point. I guess that’s why the NBC Nightly News hit me so hard the other day. I can avoid the research online and in books, but I wasn’t on alert for it when I sat down to watch the news.

(Note to self – find dates of all major cancer conferences and avoid the TV news while they are in progress).

robertin

When I went to San Francisco that Sunday, I thought I was dealing with things very well. I was actually kind of proud of myself. I went with my boss and I was driving to the airport. So, while driving I told him about the cancer. When we arrived in San Francisco we actually took the ferry across the bay and did some sightseeing, and went out to dinner that night. I slept fitfully, but then I never sleep well in hotels (now I'm bringing my Ativan along). The next morning I got dressed.... but couldn't find my bra. I looked all over the place, even tore down the bed with the 10 pillows. No bra. I called my mom in Holland, and we laughed about it. I wondered if someone had broken into my room that night, but the door was bolted and I was six stories high. So we came to the conclusion that I had blocked those breasts completely out of my mind, and that I went to San Francisco without a bra. That Monday I had to give my presentation braless. Luckily I had a lose sweatshirt. But Tuesday night I had to go to a fancy banquet. So, before the banquet, I had to fight the christmas crowds and buy a bra. That wasn't easy. Victoria Secrets didn't have my size. Nordstrom measured me I was 2 sizes larger than Victoria Secret's measurement and they came with this humongous bra with an extension .... I could swim in one of those cups. Back to Victoria Secrets. Oops, they missed one drawer and they found a bra for me.
My husband's family is not very supportive, but they're not very close. No news is good news, and so I hardly hear from them. My family is incredibly supportive, and my mother calls me every morning to hear how I'm doing and to brighten up my day. My co-workers are very kind. Some have brought by dinners or give hugs. I feel like I have a support team. Well, that's my story. Now I've got to go back to work. I'm working full-time now and it does take a lot of energy. I've just had my 8th radiation this morning. The nurses are getting a little nicer, but I still miss my oncology nurses. Our secretary's mother just got diagnosed with BC. It's in both breasts and in the lymphnodes. She's 91, so I wonder what they can do for her. She's too old for chemotheray.
Have a great day you all.

Anonymous

Quote:

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... But we all made the best decisions we could at the time, trusted our doctors, and will all turn into raging alcoholics if we second guess it all now...

---

That's what I was trying to say, but Melia you managed it in a much more concise way!

meliaanne

Jan, I am still jealous of the bourbon. That is probably the inspiration behind the comment!

NOLONGERREADINGORPOSTING

Robertin, I enjoyed your story and I am with you; this entire experience has been overall a positive one, learning about my own strengths and weaknesses, and gaining all the good friends I have here. If I have learned anything, it is my spiritual faith and my friends are the most important resources I have.

xxxooo Mizsissy

Lynn12

Hi Ladies,

I am not feeling well today. I have a weird headache and a nasty taste in my mouth, a little lightheaded. Also, when I bend down, my upper chest hurts like hell. It isn't where my heart is, but above the breast area. Is this some sort of heartburn? I've had heartburn, but it didn't feel like this. Could it be from the tamoxifen? radiation? diuretics? geesh..I'm not liking it.

Heading off to radiation, will catch up on posts later.

Anonymous

Gosh Lynn you have really been having a tough time lately. I hope that you are feeling better very soon. That lightheadedness makes me worry for you. Be careful - especially driving. Oh, and if it hurts to bend down that is a clear medical indicator that someone else should be doing the housework!

Anonymous

Anyone up for a chat tonight? Same bat time, same bat channel...

Caya

Hi all,

Well I'm home from my loading dose of Herceptin today - it went great - totally uneventful. I was out of the hospital by 11:30 a.m. and felt so good that my mom and I went out for lunch.
The onc. pharmacist went over all the possible side effects of Herceptin and Tamoxifen with me today - the onc. gave me the script for Tamox. but they don't want me to start it until July 10, which will be 2 months after chemo ended.
Lynn - I hope you are feeling better - could def. be a reaction to Tamox. and/or the rads -
It has been very interesting to read everyone's story of how they found out and dealt with their BC diagnosis - and here we all are, going through our treatments and fighting the fight...
Jan, I will try to be at the chat tonite.
Catch you all later, we are off to DD's preprom party soon - the weather is perfect - sunny, not windy, not too hot - about 23 C ( that's about 75 Farenheit for those south of the 49th parallel!!)
Caya

Anonymous

Caya - I am so glad that you made it home and are feeling good for the pre-prom party. Can't wait to hear about it. You do NOT look old enough to have a child on the way to the prom.

luckymel

Hi everybody! I'll do my best to make it to chat this evening - what time? I'm finally home and feeling fine. Just wrote a long post and forgot to use Word, and I lost it! Anyway, thanks so much for all of your support before, during and after. It does make a difference. You're all right - I feel much better now that it's over and whatever might have been in there is now out.

It turns out that I was the only one who thought I would go home either the night of surgery or the next monring. My surgeon had no intention of sending me home after a bilateral mastectomy, and I'm pretty sure Larry had no intention of taking me home that early either. It did all go very well, and we should haver the final path report by tomorrow. The whole hospital experience was great - I had very good care throughout my stay, all my needs were met, it was just about as good as it gets. I woke up immediately and was wide awake from then until about 2:00 the next morning, but not uncomfortable - just awake. By the time I finally went to sleep I had eaten two full pitchers of ice chips - I couldn't get enough, so I didn't want to go to sleep. I had no problems at all, except I have a little cough/scratchy throat stuff that I went in with, which I sitll have. They just did the axillary dissection on the left, and it did hurt, and still does if I move it one particular way, but the breast area doesn't hurt at all. He removed everything, including my port, through my nipples, and there are no other incisions other than in my axilla, so there isn't much to be painful. I just can't get my mind around how they do that! Anyway, because he left all the skin in place, I came home with three drains, and will have them for at least two weeks - I guess there's a lot of area there for fluid to collect. My Reach to Recovery volunteer was evidently contacted by my doctor, because she called within two hours after I got home today, and is coming tomorrow. So, I'm all set, and very happy to be home, and thanks again to everyone! You guys are incredible. First thing I did when I came home is read all the posts. I missed you.

Anonymous

What a great post Mel. So glad you are back at home and feeling well (or as well as you can be expected to anyway). We usually shoot for about 8:30 with the chat. Just join in when/if you can. Please tell your husband thanks for posting for you after surgery. Hope you can get lots of rest now that you are home.

meliaanne

Mel,
Welcome home!!!! So glad this is behind you. Don't let the pain get ahead of you; take those pills for a few days. And get your rest. You are home, you are safe, the worst is over, and it's all good from here on.
Melia

Lynn12

Mel, welcome home, big hugs! We missed you too! So glad to hear you are on the road to recovery. Get plenty of rest and like Melia said, take those pills!

I'll try to get to chat tonight, I have to do a review for one of my employees tomorrow and have totally procrastinated on writing it up, so that'll be my main focus tonight. But I will love to take a break and chat with you all.

meliaanne

Lynn, I hope you are feeling better. I wish you could get more rest, but it's hard when you work, isn't it? Try to be gentle with yourself.
Melia

goldnmom

Welcome home! It sounds as if you did very well. I can't picture how they remove all of that tissue through the nipple either. Wish I could see a video or something. I was wide awake too the first night. Sleeping most of the day will do that!

NOLONGERREADINGORPOSTING

@&amp;*(!><<???

Lynn, sorry you're feeling unwell, which breast is getting zapped? I felt pains and still do right in the area where the cancer cells were during rads, I imagine it was just the radiation killing them off. But don't write everything off to indigestion; try some Zantac and antacids and if that doesn't work call someone.

How's everyones hair??? I have 1/2 inch of healthy growth but I am getting impatient. I am done with treatment and I want to look normal already; it's part of feeling normal. I just ordered two more wigs from Paula Young, hoping I get at least one right this time. I ordered some very short, featherweight things to get through the summer. I can't imagine wearing turbans much longer.

Today was a good day. A bunch of us were on pins & needles about a brain scan and MRI that a friend (Puppyfive) had had. She had been told to show up with her family today for a report. We all feared the worst. Fortunately, it was *NOT* cancer. A brain aneurism, which is certainly no piece of cake, but it is something curable. I just can't deal with any more bad news about close friends for a while!!!!

I'm having a little trouble getting my body in whack--sleeping and digestive disturbances--with the new Effexor/Tamoxifen regimen, but My New Plan is to take all my meds in the AM so that they don't disturb my sleep.

Will try to make it to chat tonite.

Mizsissy

Nancyab

Welcome home Mel, You did it!
I went to my family doc yesterday and thyroid and everything survived the chemo! I don't even need an adjustment on the synthyroid yeah!!! My oldest baby is home from Tucson for a few days, I missed her! So if I don't post till next week, I'm still around just enjoying my time with DD. I see my Onc. tomorrow and it's going to be kind of sad I think, I have put so much trust in her that now that chemo is done and I move on to rads I will miss her. Who would of thought I'd get attached to my cancer Dr? But she made me feel safe and a-ok. I will also make arrangements to have my port removed and now ..I am changing back into that person I lost 6 months ago, cept much stronger and confident!
I do have a problem though and it's something we haven't addressed to much, but will I get my libido back? Did yours ever leave? I'm wondering, because if this is how it's going to be I might as well die right now. I miss my husband!

viddie

Welcome back, Mel,
I am glad eveyone worked out and you are home. I am glad the hospital nurses treated you nicely. What did you wear home? Maybe we can talk online tonight at out chat time.

Just woke up. had my 8th taxol today. I had a new nurse and was a little nervous. First she gave me Zofran pills twice. Glad I caught it. Then she was going to give me premeds before herceptin. They usually test my blood while giving me herceptin, and if blood is ok, they then give me premeds for taxol. I had to correct her. Last, my herceptin usually takes 30 minutes. Today it lasted one hour. Either she infused it slower than usual, or she gave me too much. You usually receive the one hour dose every three weeks, not each week. Should i be concerned? Should I call tomorrrow and ask a nurse. I do not want to get her in trouble needlessly. If I do ask, who should I ask? I want to keep it discreet.

TPPJ

Viddie! I am horrified by all those mistakes your nurse made. I wouldn't be discreet at all. This is your life. It could have been too much taxol! Put yourself first here. You've been through too much to put up with anything less than competence.

tlc60

Hi All:
Mel: Welcome home, good to have you back!
Viddie: TPPj is right, this is your life!
Mizsissy: My hair is about 1/2 inch long 6 weeks out of chemo. I never totally lost it, though I shaved my head quit close, and lost most of it.

Here's my BC story: I went in for my annual mammogram 4 monthes late, and totally expected the normal "see you next year" letter and never thought about it, until my doc called and left a message for me to call him. He let me know that they wanted to take a closer look so go back. Fortunely they use digital mammography there and they picked the area right up, the radiologist asked for an ultrasound so they did that right then. They tech came in a few minutes later and said, "no problem, see you next year", so I left. I was stopped by the radiologist in the parking lot who told me to come back in and schedule a biopsy, she wanted a confirmation because it looked "suspicious". A week later I had my biopsy, and the following day I got the call at work from my doc - it was cancer. I actually was calm about the whole thing, I just called my DH and went about taking care of business getting a surgeon referal, etc. Later however I fell apart, but got it together.
My cancer ended up being 1.6 cm, deep enough no one felt it, IDC with vascular invasion, triple neg.
I'm 4 weeks into radiation after 4 DD A/C and 4 DD Taxotere treatments.
I want to post this before I lose it, so everyone have a great night!
tlc

Anonymous

Mary - just after I logged out of the chat tonight my mom called. So I asked her about the dosing, etc. She said that it usually takes 3 days between the simulation and getting all of the calculations done. She added that it should never take more than a week. She said that the dosimetrist does all of the calculations and the doctor checks it. (My mom's been a rad tech for 40+ years and has worked in 6 different hospitals).

Hope I got your questions right and I hope this helps. Give them hell - I mean cookies! (Or give them hell and send me the cookies)

luckymel

Viddie, I definitely think you should call and ask for the nursing supervisor in the chemo room. If they are training a new nurse, you won't get her in trouble by questioning what she did or even by mentioning all the numerous mistakes she made. Unfortunately, people do screw up, in any job, when they are learning, but that is why they have people watching them at the beginning. Maybe she isn't ready to fly on her own yet. Since you have a question about the actual dose you got, due to the time it took to infuse it, I'd definitely bring it to their attention. If everything is ok and she just ran it too slow, no big deal but she should know. You do have every right to question what happened, though.

Mizsissy, no, I have no nipples at the present time. He removed them and sewed them up with a purse-string type technique. So I have a little gathered area holding together a bunch of loose skin. The month of June, it will not be pretty, but when the PS does her work in July it should come together nicely with no big scars.

Nancy, I think you will get your libido back. It took me a few weeks post Taxol, but it did come back. Give yourself a little time for all those tissues to heal, though. Taxol does kind of do a number on all your internal and external parts, I think.

Ok, guess I'll go to bed. Talk to you all tomorrow.

meliaanne

Good morning,
Enjoyed our chat, as always. However, I noticed during my shower last nite that my ankles have swollen like water balloons. No pain, just really big, rolls around them actually. Mel, wasn't that how all your problems started on taxol? Nancy, Viddie, anyone else on 12 weekly, have you / did you have that? I just had # 8 on Wed. Feel ok, not great, mostly worried about what is going to happen next. I really need to finish the last four.

I couldn't sleep much, took an ativan and an aleve for the pain. Am going to go to work and see how it goes. I can always come home ...

Lynn, how are you today? Viddie, I agree with Jan and Mel, I would pursue it. Mel, hope you are ok. Take it easy. And Mary, let us know what you find out today re rads. That has to be so very upsetting. Joni, you post too.

Libido, what's that? Kinda hard to feel attractive when I am bald, one breast, feeling crummy ....

Melia

IowaCindy

"Kinda hard to feel attractive when I am bald, one breast, feeling crummy ...."

Melia, I just had to laugh. Soon after my mastectomy when I had dinner with some women friends, I was commenting on what man would want a bald woman with one breast. One of craziest of my friends came right back with "a bisexual".

We almost were asked to leave the restaurant we were all laughing so hard.

Cindy