Starting Chemo in JAN 2007

Hi Ladies,
Wow, what a lot of new things posted. I'll work backwards:
Mizsissy, I can understand your worry, but I'm glad you are getting new expert opinions. I sure hope the new doc has some answers.
Caya and Viddie, I'm starting my herceptin sometime soon, but my onc wanted me to have a heart scan first and they are still arranging that. Second Taxol tomorrow, then rads starting mid-May.
Jen, welcome to the group. It's a good one.
Chey, that is an amazing dream experience. I loved everyone's stories. It's comforting to know those family ties last longer than we might think. One day a few years ago my doorbell was ringing for no reason and it finally occurred to me it was my deceased grandmother's birthday. I said, Grandma if that's you, ring it one more time. It immediately started bonging, then stopped entirely.
Let's see, was it Cindy who said you were in LaCrosse? It really is a beautiful city on all that water. It's Grandad's Bluff so you were pretty close with Grandfather's Hill. The rest of our trip was enjoyable too, I had to meet an elderly outsider artist on the way home and take pix, he was quite the storyteller. I ended up buying something from him for the yard.
And today it's over 70 here! I went to church for the first time in two months, wearing my wig, and it was ok. I also wore those new cute sandals I bought on sale at the end of November. What's the point in waiting?
Tomorrow I'm interested to see if cutting the Benadryl dose in half helps any during the Taxol infusion. Hope everyone has a good week. - Skye

Good evening all,

I've enjoyed reading all of today's posts...
Jen, welcome to the group - a great bunch of women, you'll find a lot of support here.
Mizsissy, bladder infection is my middle name. I hope the new doc has something new to offer. I always find sitting in a warm sitz bath with baking soda in it , then after drying I apply clear all natural aloe vera gel "down there" - this is very soothing.
Skye and Viddie - I'll be having another MUGA scan after I finish chemo (May 10), then my onc says he'll probably start my Herceptin early-mid June. We are lucky to have it, Herceptin is being hailed as the magic bullet for Her2 neu+ gals like us.
Chey, Cindy, Skye, Viddie - I also enjoyed your stories about relatives reaching out to us. It's really something to hold onto and think about.
Lynn and Amera, I hope you are both feeling better.
Shorti - what hospital will you be going to for your rads? I'm at Mt. Sinai on University Ave., but I don't think I'm getting rads - but I am going to ask my onc. again this Thursday when I go for my first Taxotere infusion -not looking forward to it. My chemo experience with FEC was not that bad, but from what I've read the Taxotere could be another story.
Viddie and Rebecca, - I've been baking Passover cookies the past few days - I sent about 5 dozen choc. chip cookies to my daugher at university so she and her roommates will have some goodies that week. But that is about it, no strength to make my famous fish loaf this year.
Joni - I don't have a divot at the end of my MRM scar, but I do have what the plastic surgeon who did my breast reduction ( he's the one who found the cancer) - calls a "dog ear", small bump at the end of my scar in the middle of my chest. My surgeon also said it was nothing, but I am going to ask my onc. to look at it this week when I go for my infusion. And thanks for the tip about saving the parking receipts etc. I've started a new file.
Amera - I would be wary about letting anyone touch your surgery side - 9 nodes removed is more than the usual SNB - I had 16 nodes removed, all negative, but I am being very careful. A friend of mine, who is 12 years out, says she is still very careful and still sleeps with her arm elevated every night.
By the way, my night out was great - Had a nice dinner, relaxed with some very dear old friends, almost felt like my old self - they loved my curly wig, couldn't get over how much it looks like my real hair.
hugs to all
Caya

Caya and Viddie,

I think my Passover woes this year tie in to the fact that if I do not do a seder, or arrange for my family to attend one, it will NOT happen. We usually attend a community Seder with a Jewish group that I belong to. My mother and sister will come if I invite them. The community seder was this past sunday, and I could not go because I was feeling so sick from my treatment. As far as the rest of my family goes, they could care less. It means much more to me...and this year has been very hard with reference to holidays because I am the only one (except my kids) that cares (my birth family because they are apathetic, and my in-laws because they are not Jewish). My diagnosis and surgery were right around Channukah...usually one of my favorite times...and as a result we did not have so much as a single latke or game of dreidel. In fact, the candles did not even get lit. It is all very upsetting and lonely for me.

This is amplified by the fact that I sat in my house all alone yesterday (the day of the seder) while my husband took my children to a gymnastics meet that I could not attend because I felt too sick, and my mother (who lives 60 miles away) went to a dog show 5 minutes from my house and could not even stop by to say hello. At least she thought enough of me to call and tell me that her dog and her dog show friends are more important than me. sigh.

feeling a bit low guys. Thank you all for being there.

Rebecca,

I hope you feel better today.

Lots of healing hugs and pleasant thoughts,

Maliha.

I really don't want a port, but I think I need to get one. I've finished 3 of 6 FEC treatments and my veins are in bad shape. Last week a swollen area on my arm turned out to be an infection in a vein that was used for my 2nd treatment. It's still really sore. I've avoided the port b/c I hate the idea of having plastic stuff inside me. I had the same problem with the drain from surgery and really hated it so much.

Anyway, can those of you with ports tell me what it was like having it put in. What the recovery (if any) was like. How does it feel now? I would really appreciate any details you can give me about the experience. I think I would feel better about it if I know exactly what to expect.

I had the same experience as Caya, it's really no big deal and so much better than getting all these treatments thru your veins. The only thing I can add is that they will use the same incision to take the port out and you will have a scar there but it will fade with time. I can't imagine going thru all this without the port.

Hi ladies, I hope everyone is doing okay today!

Rebecca, I'm sending out lots of positive thoughts to you. I don't have any advice but I hope you feel better soon.

I'm heading off for FEC 4 of 6 in about an hour and a half and I'm facing this one with a lot of apprehension. Lots of stuff has happened over the last few weeks, the worst of which was my aunt passing away on Saturday. She had been fighting her second round of breast cancer and just lost the battle finally. As you can imagine, this has been a rough time here for me. She managed to beat this 15 years ago but her second round of it was too much.

I'm a bit down about this round. The last one took so much out of me that I'm a bit apprehensive about this one.

I'm not sure why, maybe it's that I've done 3 of these already, maybe it's my aunt passing away, maybe it's the cold, maybe it's a combo of a lot of things...but the result is that I'm more nervous about this one than I have been since the first. The blood test yesterday was difficult, the woman had to try two different places before she could get a good vein. My arm is still sore from the second round. Either the nurse did not get a good vein or the vein just did not like the chemo drugs but the result is that there has been some damage to one of the big veins in my arm and it is still sore. I've also been dealing with some of the less pleasant (as if there ARE any pleasant ones!) side effects, namely diarrhea. Ugh, how icky. It's not terrible but still, not great to deal with. I spoke to my oncologist on Friday and he seems to think that it might just be a virus but I'm betting on chemo related. I guess we will see if it gets worse in the next few days.

Wow, what a downer I am today. I'm going to be happy once today is over, then I will be 2/3 of the way done and there will only be TWO more to do!

I'm trying to keep my spirits up, but today it's a bit difficult.

Ugh, sorry to dump all that here.

I was watching Oprah, and there was a woman on who had decided to wait on bc treatment because of some show she saw about "The Secret." Don't know much about it but apparently it's some system of asking the universe for things you want. They are supposed to come back to you.

So anyhow, this woman is doing diet and supplements for 6 months (apparently with some dr's okay) and will then see what happens. Oprah sat her down and essentially told her that The Secret was just one approach but that modern medicine was another--and that she would not discount it.

I wanted to reach out and grab that woman. Yes, there are cases of cancer disappearing without conventional treatment, but good heavens--we have all been through so much to get rid of this thing. I just hope 6 months isn't too late for her.

Not sure what I think and am trying hard not to judge too harshly. I guess I wish it were only a matter of using the right "system" and mind set to fight disease. Glad Oprah tried to set her straight.

Rambling again as usual. Just got me thinking...
Amera

Hello all:

Rebecca, hope your spirits will lift up quickly. I agree with Viddie, try to see if they are having a community Seder somewhere. Our spirtual sides are very important for the heling process.

Aladaora..so sorry about your Aunt, it makes things so much harder when you are going through this disease too.

Mizsissy, sounds like you finally have found the right physician. Good news if the infections are gone.

Ilene, I should have waited to get my prothesis also, as now I'm having problems with wearing it...especially under my arm where my "extra" boob is...haha.

Well ladies I did Chemo #5 this morning...had a 4 hour nap, and now I'm just getting up to have a nice little bath with a hot cup of tea.

Snow is in the forecast for the next 2 to 3 days, so can't go too far anyways.

Jan...did Chemo #5 FEC with no port, and boy oh boy do I wish I had got one...evenfor the last 3...I'm having real problems with my veins.

Hugs to all.....Joni

Hi Ladies,

Lots of posts to catch up on.

Aldora, so sorry about your Aunt. I'm sure it makes this whole thing even more difficult. Hang in there.

Rebecca, sorry you are blue, lots of hugs your way!

Jan, ditto to Caya's explanation of port insertion. You will probably be glad you got it in.

Joni, congrats on #5, only 1 more to go!!!

As for me, I had a really rough #4 nausea wise. I called the onc on Sat. morning and he said he can't give me the Emend until next time because I would have to start it before my tx. Told me to continue with the Zofran and take Ativan every 4 - 6 hours to help the nausea. Needless to say, I pretty much slept from Sat afternoon until this morning. I'm still queazy though and it's driving me nuts. Onc called me last night (Sunday) to check on me, that was nice of him. He has already called in the prescription for Emend.

DH is at the accountants getting our taxes done, hopefully he comes home with good news. A nice refund to pay for our post chemo trip would be fabulous!

hugs to all,

Lynn

Quote:

---

Aladora, we all have our ups and downs; there's no way you couldn't react to what happened to your aunt. How old was she? Fortunately, the state of the art is a lot better these days, and you'll have much less chance of recurrence after a double mast--if you are BRCA. AND you'll get porn star boobs and a tummy tuck!!!!!!

I have been wondering ever since you posted that you are going to take a job. You are SUCH a devoted mom, I am wondering if you really can stand to give your "little monkey" up every day. Let me just say, don't feel guilty if you decide not to. I think being a good mother is the most important job there is.

---

I'm home from #4 of 6 and this one was rough. I was given and Ativan to relax me and had to get Gravol partway through because I came sooooooooooooooooooooo close to throwing up. But, I am now 2/3 of the way done, hurray!

Miz to answer your questions:

Aunty Irene was 53 and one of the most amazing artists. After Danny was born, she did a painting for his room. This is not a great picture, but here it is. Every item in the picture starts with one of Danny's initials, D, H and G. There are over 40 individual items in the picture.



I decided to wait until after my chemo was done. When I spoke to the owner and asked if I could call her in May, she said that if I called her in May that she would have a job waiting!

You're right, leaving Danny is going to be hard and I'm going to have a really tough time doing it but I know that he needs interaction with other kids since he is going to be an only child.

But for now, my goal is to get through the next 2 treatments.

Off to go lie down, much love to all.

Hello all.
I am preparing mentally for my first Taxol chemo tomorrow. My chemos normally start at 1:00, but I have to come in at 11:30 because it will take a lot longer than AC.
As far as a port is concerned. I LOVE my port. I had the surgery on a Friday and on the next Tuesday I had my first chemo. No pain whatsoever. The surgery was easy. I have had a drain, and believe me, there is no comparison. I hated the drain. My port is on the left side, and I can even sleep on the left side. It feels like a bottle cap under your skin. My port is accessed every week, because even the bloodtests are done through the port.
Mizsissy, when my daughter had her first kidney transplant, she developed a bacterial infection in her urether. I was told that the bacteria probably was introduced during the flushing of her catheder. It could only be fought with IV antibiotics, and in the 6 weeks she was in the US, she had 3 IVs and she went to Germany with that infection. I was told she would have it for life. Well, our wonderful German doctor, who was also trained in natural healing (as they all are), said that often bacteria cannot live in an acid environment. So, he suggested lots of oranges, cranberries, grapefruits. Well, since a young child has hard time doing that, she was given a little red pill for 3 months. We'd check her urine daily with an acid strip. The infection never came back. That might help you too. I wish our doctors were more trained in natural healing instead of constantly reverting back to antibiotics.
About this natural healing of cancer, my sister-in-law has a hairstylist who did the green diet. She never ate any meat and was comptely healed of her bc. She now has her own website. Well, I have no desire to give up my chemo, nor my fish and meat. And I guess it didn't kill this little hairstylist, but then, maybe the lump would have gone away on its own anyway.

Amera,

That "Secret" thing on Oprah makes me sick. The basic premise is that if you want something badly enough it will happen. Oprah herself advertised this book, had the authors on the show and made a big deal. Since she is so influential to so many people in this country I think that she should be a bit more careful about what she puts forward as a good idea, and this is a superb example. I think the only thing that saves it is the fact that Oprah tried to talk this woman out of her plan ON THE SHOW, so that she could get the idea out there that this "Secret" is not a cure for cancer! If it was, does anyone REALLY think that we would put ourselves through chemo?!?!

I am very convinced that chemo works...mostly from the reports from the gals on this list who have not had their surgeries yet, and have been WATCHING their tumors shrink and wither away as treatment progresses. I think that is pretty convincing!

As far as ports go....in some ways I wish I had gotten one, but since I only have to get 6 treatments total, and I have a nice big vein in my arm I was advised against it. So far so good...my vein is holding strong. Those drugs are NASTY, though. I have these spots on my hands and feet that go from red/purple and painful to the touch to peely and gross. As far as I can tell they are basically CHEMICAL BURNS from the Adriamycin. It is not a common SE, but it does happen that it leaks out of capilaries like that. EEEEEEEEEEWWWWW I look like I am shedding my skin. Ahhhh the joy of it all

I missed Oprah yesterday, but I saw one of the "Secret" episodes. It bothered me when I saw it - if we attract things into our lives, did I cause the cancer? I don't believe that, but it seemed to me that these ideas could be applied that way. I looked at a copy of the book in a store last week, and sure enough one of the first stories in the "health" section was about a woman who "cured" herself of bc - no surgery/chemo/rads/tamoxifem for her! I was appalled. I emailed through the Oprah website and said I thought it was irresponsible to promote this type of thinking - surgery etc has been proven to cure cancer, thoughts have not. I'm sure I'm not the only one who had a comment - makes me wonder if Oprah had read the book. I think the whole thing is an idea with a kernel of truth that's been taken to ridiculous lengths. Glad to hear she had that segment yesterday.
I go tomorrow for my first follow-up and to get put on the Tamoxifen. I'm feeling nervous about that - another big change for my body. Some days I feel great, and then I crash and cry about my losses. They are life long - my breast (even if I do have reconstruction, it would not be MY breast), my hair (temporary I am told, but still a looong ways away it seems), having a natural menopause, wine (yes, I've cut myself off), the threat of lymphedema, and mostly my immaculate medical history - it's much more colorful now! I guess now that chemo's over, I have more energy to digest all these things. But the alternative was worse, so there you go. It feels like moving out of a dark tunnel - my eyes are blinded by the light and I'm a bit disoriented. Just have to keep moving forward, and as they say find the new "normal".

they were very secretive about her initial disease and treatment, but I did find this:

Quote:

---

Edwards' original cancer was diagnosed in the fall of 2004. The specifics of her treatment were not made public, but doctors say it's likely that, in addition to surgery and radiation, she's already received three of the most commonly used drugs — Adriamycin, Cytoxan and either Taxol or Taxotere. This potent regimen knocks out tumor cells and causes the familiar side effects of nausea and hair loss. If her original tumor was estrogen-sensitive — meaning growing in response to the hormone — then she is almost certainly taking an estrogen-blocking drug such as Tamoxifen.

---