Starting Chemo in JAN 2007

I'm not sure. I don't think they said officially, but some gals on the "moving beyond cancer" board have speculated that is was stage 3 based upon things they have read. I did hear an interview where she said she hadn't had a mammogram in the 3 years before her initial diagnosis.

It's been really hard for me to listen to the commentary about this. I was listening to some talk radio yesterday and of course, there were those who thought they were being selfish--you know, how she's on death's door and all that. The host, not an oncologist but plays one on the radio, was making ridiculous proclaimations about cancer. He clearly didn't like the Edwards' and was using the cancer theme to point out their faults. Made for good radio, I suppose.

As we all know, there are myriad types of breast cancer and treatment. Even within our own group, there are those of us with similar pathologies who are getting different treatments. There is just so much ignorance out there. I do not expect everyone to be a breast cancer expert, but I just cannot tolerate the know-it-alls spewing garbage based upon old or incorrect information. It certainly makes it harder for those of us dealing with it.
Amera

Thanks to everyone who answered my port question. I’ll talk to my onc about it this week.

Aldora – so sorry to hear about your aunt. I fell apart when Elizabeth Edwards announced the recurrence – I can’t imagine what you are going through after losing your aunt. It’s what we all worry about, but it must be so much more difficult to deal with it and the loss of a close family member at the same time. I get FEC #4 this week too and am really anxious about it. I’m enjoying my last days of feeling good this week by trying to get outdoors and get a bit of exercise.

It’s getting much warmer here (in the 80’s all week) so I am experiencing my head being HOT for the first time. I’ve been wearing scarves all along – so I guess there is not a cooler alternative?

I was following the Elizabeth Edwards coverage pretty closely (and in tears) but I've hear so many inaccurate statements about cancer in general that I am now turning it off as soon as I see it coming. It just makes me angry.

Hi all, I was at infusion room most of yesterday then sleeping off excess Benadryl. They cut my dose from 50 mg to 25 so I only slept one hour instead of four, but it was a most unpleasant time. In the chair next to mine, about 2 feet away, was an elderly lady from a nursing home with an ostomy bag that needed changing badly. I could barely stand to eat my lunch. Also she babbled loudly. Next to her was a gent who continually made loud gasps followed by loud groans. Sitting across from me almost touching my recliner platform were two talkative lady visitors spouting unwelcome opinions. I was so glad to go home. Only two more. One thing I learned from my onc that I wanted to share; I asked him about losing fingernails and toenails and he said its only a 2 percent chance with Taxol but closer to 25% with Taxotere, and can happen as a delayed reaction so some of you on Taxotere may want to think about the ice water treatment. The nurse who lost her toenails also had lots of red lines and marks on her nails beforehand.

Jan, on the port, I wouldn't hesitate. Mine was put in under twilight sleep, home that same night, was sore for a few days but now I never notice it and even sleep on that side. Sometimes I don't even both with the Emla creme anymore. In my book it's a blessing.

Dar, I miss wine, too. Used to have a glass of merlot with dinner, now it's milk, water, or nettle leaf tea. NOT the same! But it's a different life now.

Rebecca, I'm so glad things picked up for you and you'll have your Seder. I'm Lutheran but we once had a Jewish group come to our church to present and explain a traditional Seder meal and it was wonderful and enlightening. I have the parallel problem: what to do about Easter? We usually have a small portion of my huge extended family at our house, and finally decided we would still do that but on paper plates instead of the china, my dh will cook a ham or turkey and we'll ask for contributions. I may or not get my bunny collection set out. It's on my "good" weekend, luckily.

Robertin, that neulasta price seems way excessive. Mine cost under $4,000, you are paying over twice as much. How could they do that? Speaking of Neulasta, they are lowering my dose because my white cell counts have been fabulous. I don't know if that lowers the price, too.

On the "Secret" which is essentially a rehash of old books like Think and Grow Rich or Hung by the Tongue or The Power of Positive Thinking, I believe it's criminal to encourage people to forego modern medicine, which is just as much a gift from God as anything else. I still believe positive thoughts and prayers and allowable supplements are hugely important, but I'll tell you, when I saw that tumor on the x-ray, I wanted it OUT yesterday! And then I wanted the stray cells nuked.

On Elizabeth Edwards, she was Stage Three. Her tumor was the size of a half dollar. I don't judge her for her decision, it does help to have something else to focus on. But traveling on a campaign trail would not be my choice while battling Stage 4. Neither would any unnecessary separations from young children. What I'm wondering is whether she was HER2 positive. If so, that newly approved Tykerb is made to order for her and could truly save her because it's meant for metastasized HER2 and has certainly eased my mind on possible recurrences. That is the one thing I haven't read anywhere, and I did a Google search and spent a while reading all her old interviews and stories.
Back to the hospital now for my reduced Neulasta, hopefully it's also reduced bone pain. Peace and blessings to all - Skye

On the topic of infusion room companions ... my favorite was one day having to listen to an older man repeatedly and loudly throwing up. I was only in for blood counts fortunately - but it was all it could do not to puke myself while having to hear that!

For the chatty people I use the same strategy as for airplanes - I put on my ipod AND read a book. The combination of both says pretty clearly that I don't want to talk to anyone and the ipod helps cover up the noise.

For those with ports another question - who put it in for you? Could I get the same surgeon who did my mastectomy?

I just really need to vent on this one..
My 13 year old son was having pain in his calf, the pediatrician only took an xray and said everything was fine. He still had the pain almost all the time. I called back the ped and got a referral to an orthopedic dr. This was all right when I was diagnosed, so I really couldn't get him to the dr.
When I was well enough, I made another appt. (it took 3 months.) We went last night , and the dr had me fill out a family history(4 pages long), examines my son and says, right in front of him, We need an MRI to rule out CANCERS AND TUMORS!!! I almost hit the floor crying. I thought that it was so insensitive. I said, I have cancer. He said well it has been there a while, so it prob isn't. This is a well known dr at Childrens Hosp of Phila. I am beside myself worrying!!! My son said, mom it isn't that , don't worry, but how can I not. The positive attitiude is easier when it is not your child. I went online and it basically said that these cysts are benign, so that made me feel better.
How can these doctors be so mean?
Thanks for listening,
ilene

Hi Folks,

My posting time is limited as I am still waiting for my laptop and have to post down here in the ...COLD... basement; I am not reading *everything* you post, just skimming, I'll catch up later when I can read upstairs...

Aladora, I love that name...I know your name is Susan, but Aladora is name You chose. When I see those pictures of your son and see his shining smile and bright face, I *know* you are doing a wonderful job of mothering him. It is hard to imagine how anywhere but being at home with you could be better. I do know a family up north in Michigan who have an only son who spent his entire childhood at home, home schooled by a very loving mom. He is one of the most wonderful boys I've known, sensitive, loving, caring...someone has amazing social poise for a boy of his age, who listens and is worth listening too.

DH and I had a wonderful weekend with him a few summers ago when he was about 12. He took it upon himself to keep us company all weekend, went bike riding with us, played badmitten with DH while I painted. He told us the most wonderful stories about faces he saw in the clouds, and how he could look into the woods at night and see things no one else saw, like eyes of animals, their eyes glowing...I swear, I almost fell in love!!!!

There are many things wrong with modern society, and I think one of the worst things is that children get shunted off to daycare while both parents work, get over tired, and frustrated, and no one can stay at home to keep house, make it a pleasant place to live, or relate to the children. I think a child's intellect and creativity depend more on his relationship with closest caregiver than anyone else, and no one can care more than a mother. I wish there were some way the good and wonderful mothers, Aladora being a good example, could be the ones to have children and other women to have careers, so we would have a society where most of the children would be born into large families...

It was such a joy to see your son and his pictures...

Mizsissy

Ilene that is absolutely dreadful. I am so sorry Drs can indeed be very insensitive, remember that they see this stuff every day, but it generally only happens to YOU once!

I sympathize with the chemo room observations, although I have to admit that I tend to be a bit chatty (mostly because I get bored). I have not yet had any awful experiences, but my goal is usually to get the people I am talking to laughing and smiling. I have done pretty well so far When people are not interested in talking, I read and listen to my MP3....I wait until someone stirrs up conversation before I turn it off.

Hello everyone ,
Lynn hang on girl the nasty nausea and such I can feel for any of you gals the FEC was not a good ride for me but I only had 3 infusions . The taxotere is being "kind" to me so far ..... have had only one .... my nails so far have been good no lines yet .... but we shall see . Bone pain is manageable , I just get a little worried sometimes thinking that maybe its another "site" my right side ribs have been sore all along .. will ask onc next week . But I do get a CT scan before rads so if there is anything there i am sure they will see it . Also my bone scan did not show anything and I had that done in Nov . Its just the voice in the back of your head sometimes .
Chemo rooms yes i pods are great i use my mp3 and it helps , but I did finally meet a woman that is having the same regime as me , although she is getting it to shrink her tumor and mine is after the fact . I was good to have another BC person there . We talk on the phone and have our infusions at the same time . She also knows another gal who has both colon and BC so we trade stories and e mail each other . I find as time goes on the friendships are growing .
Joni next time i am in Calgary I look you up for sure , I would like to fly out on my own to visit my family before I go back to work in Sept .... but we shall see I will have to plan it out . I am also in touch with another BC woman that lives in Northern Ontario Val she is on the Nov group we are planning to meet in Aug as our family camps up by where she lives .... she had the same chemo regime as me and is done now and onto rads . The sad thing about it is until you get BC you never see how many of us have it . As for the gal on Oprah .... yikes I would use alternate therapies along with chemo ... what stage was she??? makes a big difference . Ms Edwards .. well US gals she does have $$$$ and I would be spending my time with my children , maybe you just have to have radiation with bone mets ???? Interesting story ... I would rather have the bone mets than the liver , lungs thing .
I am enjoying my time off with my teenage daughters and finding the time priceless .... I still have to get my genetic testing done so we do not know if they are at risk yet ..... no replacing the time .... They both know of the risks to them I have kept them "abreast" of all my treatments they are dolls as they still see mum as getting better for the summer ..... and I will !
2 more treatments to go for me ... who is last here ? Can we celebrate at the end of April for end of infusions ?

All I can say is this forum is a good place ...

Jan, it is nice to hear some POSITIVE things about daycare. I never had children (though I wanted to), but I've heard so many negative things. In fact, some close friends of ours lost a child at daycare...I don't want to go into details, it's all too tragic, but it is nice to know there are some good ones out there.

Robertin, you were way overcharged for Neulasta. I remember when I got my first shot and insurance didn't cover it, it was *only* $2400, but then the company agreed to cover the charge for me, because I was the first one that my insurance provider decided not to cover. There is HUGE markup going on. CONTEST IT!

Mizsissy

Helo all:

Well the day after Chemo #5, and I am feeling really good. Have very puffy eyes though today, have never had that before, but they are really swollen. Had nice breakfast of oatmeal and bananas, a nice cup of tea, and oh yes, my prune juice.

I'm going for a walk today...it is snowing very heavy right now, but it's not really that cold out....we are suppose to get from 7 to 10 inches of the stuff.

I just finished off a project for my sister's mother-in-law's birthday....put together a powerpoint slide show of pics they gave me, and put it all to music. It was fun doing it, and hopefully it will be nice at her party. She turns 80 on April 2, and she is a really wonderful lady. She lives in Saskatchewan, so the party will be out there, so I will miss it.

Jan, I never thought of the PICC line, but that might be easier for you now that you only have a few remaining treatments. I only have ONE more treatment...April 16, so I will endure as best I can.

The Secret is just a new spin on OLD stuff that has been around for awhile, and I for one don't believe I brought cancer in my life, or that I can get rid of it without medical intervention. Enough said.

I met a young lady yesterday at chemo...named Tanya, she may join our group....she was on #4, and started in January.

Hope everyone's treatments go well this week, hope you are feeling better Lynn.

Cheers everyone....

Joni

Holy buckets that's expensive! My onc bills my insurance company $5047 for my injection and I was angry about that. Even working only 30 hours every two weeks, I keep plugging along so I can maintain my insurance. I don't know what I'd do without the insurance but plan on bankruptcy when I was done with treatment.

I think that I'd ask a few questions about the extreme difference in Neulasta costs. You can tell them that my cost is from the Omaha metro area.

Cindy

tropicmom,
I applaud your courage. Sending prayers and thoughts to you. Keep up the good work

Good evening ladies,

I had my meeting with the genetics counsellor today, they are going to do the BRCA 1 & 2 testing on me - up here in Canada it's not a "given" - but because I am a premenopausal under 50 woman of Jewish Ashkenazi background, + the odd cancer relatives, some with BC, but none really close - they will do it. The counsellor thinks based on my stats I have a small chance ( maybe 15%) of being a carrier- I sure hope not, like you shorti, I've got 2 girls - ages 18 and 21, and I'm trying to be as positive as possible.
Ilene - man, that dr. must have failed "bedside mannner 101" - I can't believe how insensitive he was - but try not to worry, it's probably nothing. Keep us posted.
Robertin, it was very warm here in Toronto today - about 70 degrees, and it was hot with my wig on - I may go bald sometimes too. Bravo to you.
Tropicmom, I wish you all the best. I'm HER2+ also - has your onc. discussed the new drug TYKERB that was just approved in the States for HEr2+ - Keep being positive, the stats are being rewritten as we speak about HER2+ BC - the drugs Herceptin and now Tykerb are being hailed as showing great promise...
Skye - thanks for that tip about the Taxotere and the ice water - I'm going to call my onc.nurse tomorrow and ask her about this as I'm having my first Taxotere infusion this Thursday.
Jan - A radiologist inserted my port, not my BC surgeon who did the mastectomy.
Shorti - My last chemo is scheduled for May 10th, so I think I may be the last of the group...
Joni, Lynn, and anyone who is recovering from chemo, I hope you're feeling better,
Caya

I definitely think the Celebrex they gave me for my joint and muscle pain (Taxol) is really making a difference. Ask your onc about it - I got some free samples to try. The only bad thing is it affects more stomach - some stomach cramps. Now I am taking it with yogurt with active cultures and that is really helping. I have no need for Colace with the Celebrex so that's a good thing. I just take one Celebrex a day and then Tylenol every five hours or so. I went to the gym twice yesterday (ok that was overdoing it a bit) but that's how good I feel. Good luck.

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I am keeping a closeful eye on them and nothing so far. 2 more tx to go, so hopefully all is well with my nails, although I do believe if it does happen, it happens towards the end of the tx.

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Lynn, I have heard that too. I have been watching my nails with anxiety as well....the "t" in tac is taxotere....so far all I have seen are faint silvery lines across my nails at the base. so far so good. I have also heard that there can be a delayed reaction with nails popping off months later. blech. I just hope that if any of us lose nails it is TOENAILS not fingers. At least we can wear socks then!