Starting Chemo May 2008

Thanks ladies for all the great suggestions. My mother-in-law has numerous wigs and orders them from a catalog. See's in her 70's and looks great. I think my insurance will cover a wig so eak, I'll take your suggestion and speak to my oncologist for some local places. There is a great support group at the hospital, I just haven't made my way there yet.



Otter, my daughter is an exellent seamtress and would be thrilled to take on a project. She's doing her final speech on me for her speech class. She makes me so proud. I know they'll be hitting chemo pretty hard since I'm 47 with a grade 3 so I guess I better chop to it and get shopping. I'm trying to find a blouse for this weekend that will confide my drains (still have them since mast last week). This will be the first time I've been out in a week except for Drs.appointments. I know alot of the new styles out there have that full drape front, so I'm hoping it'll be easy. Who knows, maybe I'll even be able to enjoy a beer (that is if if I'm off the painmeds). Yeah! Thanks again everyone!



Roxi

Otter,

That's about what I figured. I've got a group particpating in the Susan B Kolmen Walk for the Cure in Chicago in August and I already gave them a heads up that I'll all depend on how I'm feeling if I can particpiate or not. I will definately be there, just don't think I'll have the energy to walk. I've also heard many women's hair comes back different? Mine is curly and I've been coloring for years. Maybe it's time to let my grey come in....



Roxi

After explaining my chemo regimen to me and telling me I would lose all my hair, my onco pulled out her prescription pad and wrote me a prescription for a "cranial prosthesis."

I had read that the prescription had to say something like that so it wouldn't be interpreted as a cosmetic treatment.  I thought the story was a joke; and I haven't had the nerve to try it out on my insurance company yet.

otter

I've checked out the headcovers.com site also and was pretty impressed with the selection.  Haven't bought anything yet, though.  My onc also will give me a "prescription" for a wig and there is a place about 25 minutes away that works with cancer patients.  And everyone at work liked my new hair!  We'll see how long I get to have it...

I didn't see the other thread - I just marked this one as a "favorite" and check it on my home page to see if there are new comments. 

Lorena - yes, it is nice to have an RN always present.  But what is Neulasta?  I think I may be starting around May 8th.

Neulasta is an injection that boosts the white blood cell count.  I believe it is the newer prescription, and it is given one day after chemo treatment.  It is VERY expensive ($3000 per dose, yikes!) so I am lucky to have health insurance that covers it.  Some people take Neupogen instead, I think, which functions the same way but involves a series of injections.

I enjoyed my "temporary haircut" for exactly two weeks.  I got it two days after my first treatment and ended up getting in all buzzed off two days after tx #2.  Oh well.  My half-wig that peeks from under my hats looks like my shorter haircut so the change is less noticeable.

I liked the products I ordered from headcovers.org better than those that came from the TLC shop at the American Cancer Society (although they have a good selection too). It could have just been luck, though.  I especially like the denim hat with a rolled-up brim.  Otter, I used that funny prescription to save me $500! 

Lorena - I too saw that cute denim hat.  I think that will be my first hat purchase.  My husband loved it as well.

Yikes!!  $3000 for Neulasta???  What happens to the poor people without insurance?  Even with insurance the copay is horrendous. 

Hi everyone.  I'm in the April group, but on of the late April starters - I began on the 24th.  I came here when it first got started, but apparently got lost.

The Other Half - guys are always welcome, no matter what the situation. My guy has been totally supportive, although we have disagreed on some things.  My bs recommended lumpectomy, which I originally agreed with.  This came however, the day of diagnosis.  I then waited 3 weeks before my surgery, and didn't see him until Thursday afternoon before Monday surgery.  In that time, I thought, probably too much, and decided on a simple mastectomy. DH was against it because of recovery time.  I honestly believed he was concerned about my well being.  When I told my bs that I had changed my mind and wanted the mast.  he was ok with it, but said if I wanted immediate recon.  I would have to wait at least 3 weeks to get everything set up with a ps.  SO I went back to our original plan.  Fast forward to today. I had blood work after my first infusion and my count was low.  As I was waiting for my neulasta shot, he told me how much he hate the place.  When I asked for an explanation, he said he didn't like the way I had been suffering.  I thought I was doing fine.  I reminded him that this was making me better.  He knew it, but... This from a man who pulls at my hair everytime he passes because the birds need it for nests more than I do.

I ordered wigs from PaulaYoung.com and am very pleased with them.  I ordered 2 for less than I could buy 1 locally.  Two different looks - one a little longer than my usual short cut, and the other almost identical.  If you don't like these, you can return them, so long as the tags are in tack.  I also purchased last summer a coolmax ball cap from llbean.  I wear ball caps all summer, since we boat and are outside most of the time.  This was the best investment I've made as far as caps are concerned.  It's very cool.  This year, I bought a neutral color to use anytime.

To all who are getting ready to start treatments.  Good luck.  You will beat this demon

clg:

Welcome to our May group.  Tomorrow is my 1st treatment, I'm getting 4 cycles Taxotere/Cytoxin every 3 weeks.  I wish you well during your treatments.  It was good to read that you are doing well thus far, now that the headaches have subsided.  I have one wig, am going to the local American Cancer Society to check out their options, and may try the Paula Young wigs mentioned by beachmom.  I had a melt down several time, most recently about my hair and now I feel better.  I can't change what is going to happen and while I do not want chemo, I look at it as giving myself the best chance and I won't wonder if I should have done more cause there will be no more to do.

Look forward to getting to know you.

kpopperwell,

You must be referring to the TAILORx trial.  Many of us were asked whether we wanted to participate in that trial, once it was known that our tumors were ER+.  On that trial, women with Oncotype scores 10 or lower will not get chemo; women with Oncotype scores 26 or higher will get chemo.  Everybody with scores in-between (11-25) will be randomized to chemo vs. no chemo, based on a coin-flip.  Be sure you read the "informed consent" paperwork and call your onco or the clinical trial nurse if you have any questions.  Or, you could post your questions here, and we will try to answer them.

I decided not to participate in the TAILORx trial, because I did not want a major decision in my medical care being determined by a coin-flip.  As it turned out, it wouldn't have mattered for me.  My Oncotype score was 26, so if I had joined the study, I would be getting chemo anyway.  I am midway through my 2nd round of Taxotere & Cytoxan, and so far, I'm doing fine.

That score helped many of us make the final decision one way or the other about chemo. 

otter 

Welcome to all new comers!  Yes, this is a comforting place and I look forward to reading here every night. 

I see my onc for the second consult tomorrow morning.  I have chosen the Cytoxan/Taxotere route, but am not sure when I will start.  Maybe next week, depending on what I need to do to start, like labs, etc.

I will have to try out the PaulaYoung website.  I told my 8 y.o. dd tonight that my hair loss will include my eyebrows, lashes, etc. and she took that pretty well.  We even looked for fake eyelashes in Wal-Greens!  I think I will let her help me pick out some hats, turbans, etc.  My colleagues at work (I work in a prison) have offered to come in with me for "Turban Day" - that felt very supportive!

Good luck tomorrow, RobinK.  I will be thinking of you.  Let us know how it goes.

Wishing everyone a less stressful day tomorrow.

DSUB,

Welcome to the group. I find out on Monday what my regiment will be. The P stands for Progesterone and the H stands for Hormone and both of these indicators determine the best case for chemo treatment and hormone therapy. Check your path report though because you're missing the E which stands for Estrogen. This as well as Her 2 are also determining factors for treatment. Her2 genes tend to respond better with certain drugs targeted to the Her2 receptor such as trastuzumab and lapatinib. Since your tumor is HR positive, your tumor will respond better with hormone therapy. I have a booklet which I received from the American Cancer Society that outlines the chemo options based on your tumor prognosis. According to the book and your course of treatment, you're Her2- but you can find this out on your path report. Since your Her2- you're also a candidate for tamoxifen to reduce the risk of the cancer coming back. It's a lot of information I know, but many ladies seem to be on CMF. I believe Otter may have the same DX as you. She has provided some great information for all us gals. Good luck and we'll all be thinking of you.



Roxi

Hi Maryal:

It is so nice for you to stick around, its is woman like you that inspires us, to continue to fight, I think you look beautiful, just like a little doll.

Take care, and thank you.

Angela: I had my appt yesterday and can relate to the shovel against the head feeling. I think I have four doctor's appointments before my chemo starts and then two more the day after.  My "profound" advice?! Breathe in. Breathe out. Breathe in. Breathe out. : ) 

I start chemo on May 7th. AC and then T. (1.8 cm cancer, aggressive growth and spread; 42 yo)

Re: Wig & hair options.  Don't rule out help from your "regular." While I fully intend to "rock the bald" I haven't ruled out wigging it from time to time. I swung by the Aveda hair place and lo and behold, there was Brigid (the young woman who cut my hair the last two times) styling a wig. Long story short, she has agreed to give me a supershort cut, and then offered to a) help me with hair removal when it starts falling out (I've heard duct tape works well--honest);b) go with me on one of her days off to pick up a synthetic wig or two which she assures me can be purchased on the cheap; c) style my wig if I want her to; and she also will d) give me a "head" to hold my wig. Apparently, this 20-something has been through this drill before with other women! A real sweetheart. 

Although I'm in the April group, I will still be getting chemo (Taxotere & Cytoxan) in May and June, so I hope y'all don't mind if I hang around here a bit, too.

dsub, our tumors have/had some similarities; maybe when you get the rest of your information you could post it here.  Mine was ER+ (had estrogen receptors), PR- (did not have progesterone receptors), and HER2- (did not over-express HER2).  It was a Grade 2, whereas yours was Grade 3.  I also did not have any positive lymph nodes.   It sounds like you already have a plan.  I'm not sure why your onco chose CMF.  There is a discussion about CMF somewhere around here; maybe it's on one of the other topics rather than the Chemo topic.  I'll check.

angelsaboveus, that was a surprise to learn you were triple-negative, I'm sure.  The good news is that it sounds like your onco is on top of the situation, too.  Remember there is a whole topic on the BCO boards for triple-negatives, and it's really active.  Some of the veterans here are (were) triple-negative and have lots of advice to offer.

rockthebald, duct tape works, but one of those sticky lint rollers is a little less brutal to your scalp when you need to collect the stragglers.  You can buy lint rollers 'most anywhere. 

Has anybody heard from Robink yet?  I hope she did OK.

eak, I do not have a port.  Everybody says I have great veins, and I will only be getting 4 treatments (2 down, 2 to go!). Even so, it makes me nervous when I have to get all my blood draws and BP measurements and i.v.'s in the same arm (because the other arm had 3 lymph nodes removed).  Sometimes all those things have to be done in that arm on the same day.  It's been working OK so far.  The chemo nurses do get a funny look on their faces when they are setting up for my infusion and they say (hopefully), "Do you have a port?"  I get to say, "Nope.  We're doing this with veins."  They are very good, though (so far...).

otter