Starting Chemo in JAN 2007

Dar1

Hi all - hope everyone had a good weekend.
Mrs. Shey, I'm so sorry to hear of all the stress in your life. BC is the gift that keeps on giving, and effects everyone in the family. As to the port - I had the 4 AC with no port and am glad I didn't have one. Maybe the results of your oncotype test will show that you can skip chemo.
Amera - one left! Good luck on Thursday.
Mizsissy - sounds like a wonderful party.
We went to Calgary yesterday. It was one year since my Mother's memorial service and we all went out the cemetary. It was bitterly cold and windy, as it was a year ago. It was a hard day, but I'm glad I went. I could see that my family does care, though they have a hard time showing it! But, as the saying goes, we have to accept what we cannot change.
I'm feeling OK on day 13. I have muscle weakness and fatigue that comes and goes and my nose is dripping. Of course, I would like to be back to "normal" right after I left the infusion chair. I know that's not possible, but that's what I want!
I shaved my stubble off last Thursday, and you know, it's bristlier already. Showed me that yes, it is definitely growing. I'm impatient on that front as well, especially since chemopause and wigs/hats do not go together! My head gets hot, then it's cold. My MIL has worn a wig all day every day for 23 years and I don't know how she stands it!
Oh, and I bought my butterfly pendant the other day. It's beautiful - filigree gold and silver. I love it.
Hugs to all.

sharon56

well the weekend turned out better than I expected the muscle aches and pains are subsiding and overall the taxotere treatment is easier than FEC . Its only one drug not 3 ! Researching on the drugs i found out the tax has a shorter low point. Hits faster and you come out of the fog faster . I can eat better which is so important I need the protien and calories my muscle mass has dwindled .....
Mrs Shey hang in there take one day at a time , vent here there is lots of space .....
I drove my hubby and kids to the Toronto Sportsman Show yesterday , could not go myself (too mny germs) bad timing , they had a great time going over all the kayaks and camping equipment getting ready for summer and it was a sunny day so I go my dose of fresh air .
Mizsissy . My colon cancer is taken care of at surgery one tumour gone and part of the fec i took in the beginning is used to treat colon cancer , I just have to have yearly check ups .
So for the nxt 2 weeks treatment # 2 of taxotere on April 2 i am going to get ready for spring get my protein pills and put my helmut on (as David Bowie would say ) fingers crossed that there are not more SE than being tired .

skyedivine

Hi Everyone,
First, Mrs. Shea, I'm so glad to see you back with us, and please know you have my prayers in all that you have going on. That is a huge load, but you are going to get through it somehow. I'm glad the oncotype testing came through as least one positive answer and will pray the results are positive as well. Please let us know as soon as you find out.
Thanks everyone for the well wishes about last week, it was indeed a scary ordeal having to do all that the way I felt, but family members were either all away, sick or unavailable so you just pluck up and get it done. We were able to rest at home yesterday and I finally started to feel a little strength come back and the pain subside. After I left the hospital I only had Tylenol for the pain and it really wasn't enough, should have stolen one of the dh's Percosets. But today I was able to drive us both to Burlington for our checkups (both fine) and stop for groceries as well. The Taxol SE's of bone pain and gas have both subsided, too, so I'm looking forward to a "good" week before treatment 2 next Monday. Is it Nancy taking the Taxol weekly? I didn't have that option but I imagine it would be good to get over things faster overall. Not to scare anyone but a nurse I had in the hospital last week who is a year younger than me and has the same birthday had a 2.1 cm tumor two years ago, mastectomy with 4 weeks AC and 4 weeks Taxol, and while she is "fine" (no recurrence and working full time) now she said she lost 3 toenails from the Taxol!
Mizsissy the NPR show got pushed back so they haven't given me an airdate yet but I'll let you know. Shorti glad you are feeling better too.
Anyway here is to a better week for everyone in the group (raising a glass of flaxseed in juice) - Cheers! - Skye

NOLONGERREADINGORPOSTING

Hi Dar, I am on Day 15 and I am just lolling around in bed, drinking tea. Got up this AM and came down here to *network* and got so cold I had to take a hot bath...I feel really decadent but I think I just need one very quiet day to recover. Nose was dripping yesterday but that's stopped. I never got totally bald, there's stubble there and I refuse to shave it off because I just want *something* *anything* to grow back, but so far I don't see a lot. Of course it's all gray and kind of invisible.

When do you start rads? I had an appointment for a simulation today but it was snowing and I was too tired, so I posted it for two weeks.....xxxooo Mizsissy

Nancyab

Yeah, it's me taking taxol weekly. I hope I get a day or so without pain before the next tx. EEEWWW. I will be going every Thursday. Radiation Dr. told me to take a month off between chemo and the start of rads. That should be June, looking forward to that.

NOLONGERREADINGORPOSTING

When does the month start??? from the date of your last infusion or Day 15 of a two-week cycle. I'm defining mine the long way...!!!

Nancyab

That is a good question. I really don't know. I guess I should look one day at a time, Blood counts and such could have an enormous effect on the plans. Right?

Lynn12

Hello Ladies,

Wow, lots to read.

First, MrsShay. I'm so sorry to hear about everything going on in your life but glad you came back to us! Try to take one day at a time! As a few other ladies said, you don't need to have the port in to start chemo. Since you are getting the Oncotype test, that might come back with a reading where chemo would not benefit you, so you might think about postponing the surgery until you get the test back. I have a port and although I love it for the infusions, I can't wait to get it out, so don't have the surgery unless you need it.

Mizsissy, so glad to hear your party was a success! Now relax and pamper yourself for a couple days.

My Onc told me I would start rads 3 - 4 weeks after my last chemo. I took that to mean after the infusion. He said I would also start on Tamoxifin about that time as well.

I had such a wonderful weekend, especially compared to last weekend. Sat. night we went out to a local place where a band called 'Orange Crush' was playing. They cover all sorts of 80's songs. It was sooo much fun, we danced 5 or 6 times. There were actually a few times where I totally forgot about everything going on with treatment and such. Yesterday was the St. Patricks day parade in a neighboring town. Friends of our live 4 houses away from the parade route so they have a party each year. It was really cold and windy so although I didn't do down to watch the parade this year, I stayed at the house with a bunch of other wimps and had a wonderful time. DH had a great time too, hung outside with all the boys and drank beer. He really needed to do that (I was designated driver). Today my mom and I went to Yankee Candle flagship store (about 20 miles away) and I bought some candles and bought my mom a cute candle holder. We then had lunch..really nice day!

Now I'm exhausted and need to catch up on sleep. Going to bed early tonight!

I have my 4th of 6 infusions this Friday and I have a few questions to ask the Onc about SE that seem to be getting worse each time: muscle twitches, nose bleeds, gas, nausea, hot flashes. Not looking forward to it but ready to count another down.

Lynn

Lynn12

Hi Ladies,

Do those of you who have a wig wear it? I loved my wig when I got it, before I lost my hair, but haven't even worn it once yet. I do think I'll wear it when dh takes me out for my birthday dinner, but am really fine wearing my other hearwear. Guess I'll donate it, it was about $250 paid by insurance.

Lynn

NOLONGERREADINGORPOSTING

I haven't worn any of my *3* wigs once!!!!! (Except to the grocery store). Every time DH & I have some sort of social event, I try on my wig and he tells me to put on the turban & bangs.

Still wondering about rads...I just postponed my simulation for two weeks, which means it will be 4 weeks after my last infusion, with the actually treatments beginning at a later date. Anybody know the exact *window* for starting treatment after chemo, do you count from the infusion date or end of cycle date?

Amera

I was told that rads usually start 3-4 weeks after your last infusion. However, when I called the radiation place they said 4-6 weeks post infusion. I have an appt on April 2 which is 10 days after my last infusion. Don't know when I'll start the actual rads or if this will be the simulation. I'm wondering if they can do the tattoos during my low count period. I doubt it so this appt is probably just another planning appt. I've already met with him once.

I have my last AC on Thurs and then I am done with chemo. I am happy to be getting it over with but frankly, I am dreading feeling crappy. I am still pretty tired these days and have that low level cough from the last time. Otherwise okay.

Round 3 was tough and I imagine round 4 will be worse. Oh how I hate knowing that I will be tired and nauseous, the weird smell and taste sensitivity, the all around toxic feeling. I am getting more anxious about this one than I did for the others. Maybe I will get lucky and it won't be so bad. AND, I swear my hair is growing back. I have some wisps that I never got around to shaving off and they have definitely grown. I also noticed some stubble popping out. I'm sure this will fall out 2 weeks after my last chemo but it's good to know it does grow back. I don't think I'll start to feel completly normal until I can go without a hat or scarf, although I am sort of getting used to the looks.
Amera

mer1957

I wear my wig every day to work and if we are going out anywhere. Otherwise it's either my pink or blue hat in the house and to the store. Today at the gym I was sweating so much, I just took it off and let them see me bald. Doesn't really bother me anymore but at work I think the stiff lawyers would have a heart attack.

Rebecca

I have to say that reading the reactions to wigs on the list I am glad that I never bothered with it. My impression is that they are expensive, itchy and a pain. I never liked to bother much with my natural hair, and wigs appear to require quite a bit of maintaining to have them stay nice. I sat next to a woman with a poorly maintained wig at my last infusion and I swear she looked like she had a dead animal on her head...which was in contrast to the lady on my OTHER side who had a meticulously kept wig and looked lovely. I like my scarves, and as a plus, I can use them AFTER chemo for a variety of purposes. One thing I am considering is gifting some of them to the people who have helped me through it...and even if I do that, I will still have scarves to spare!

As far as Taxotere (I have seen a lot of chatter about it lately)...It has been part of my regimen from the very start. It is only now that I think I am really starting to see some of the SE build. My legs have been very rubbery and somewhat achy and non-responsive. I am being driven MAD by all of the muscle twitches in my face. On the other hand my nails have not turned black, and the bone pain is still erratic....but starting to build. I think that it builds up in your system, and it takes time for the nasties to start to manifest. Of course this is all with the caveat that I take Taxotere mixed with Adiramycin and Cytoxin, so it is a bit difficult to sort through the different effects. I was also told that if you get a lot of twitches in your eyes and face, scrunch up your face really tight and hold it there for a minute or two...it fatigues the muscles....and they should ease off a bit. Don't know if it works, but I plan to try it next time I have a twitchy attack.

Hang in there Mrs Shey...I do not have a port and I am doing fine, so do not sweat it. Try to find your peace, and keep us posted.

NOLONGERREADINGORPOSTING

Amera...thanx for a definitive answer on rads timing.

@!!!! Your anxiety probably has something to do with the fact that it is the last & you are so close to being done you are afraid that something might screw it up. A lot of people did better on their 4th than their 3rd...I didn't, but I had multo-infections.

I probably should get the Darwin award for over-posting today...I'm just bored from lying around trying to get over these endless infections [not to imply that you gals aren't the most fascinating group of women I've ever met!!!!].....Just got a *NEW* prescription for a new drug for round Antiobiotics Round #10. When will it end?!!!!

Robbin65

I have never worn my wig either. I just have been doing the hippie scarf thing.

My Godmother Aunt is here from New York City and she is having fun with my mother....(her sister). I got them tickets to see the chippendales as a present. Ha... I think they will have a blast. I will probably go with them and if I do I will perhaps wear the wig. I don't know yet.

I am fine going out with just the scarf thing. I might sell it at my yard sale or go ahead and donate it.

Oh, I have decided just to do my 4 rounds of chemo. I have only one more to go. Yippie..............

Lynn12

RobbinJaye,

Congratulations on your decision! I'm sure it's a big relief now that's done. One more and you're done! Woohoo!

Lynn

NOLONGERREADINGORPOSTING

Whew..I'm so excited to have all this new company. Congratulations Robbin Jaye!!!! There will be four of us now.

Rebecca, when I saw you were doing TAC I could hardly IMAGINE how you could deal with all of that at once...TRIPLE WHAMMY!! More power to you!!!

viddie

Hi all,
Mrs. Shey,
I am so sorry to hear about all your troubles. Hopefully your oncotype test will come in low, and you will not need chemo. I also agree that you should wait to put in the port. You can definitely start your chemo without it.

Lynn,
I hardly wear my wig anymore. I wore it to work the first two weeks, then I started just wearing my turbans. They are so much more comfortable. I still have trouble in the supermarkets. I do not want to go shopping, and seem to just look down now. I even find myself giving people dirty looks when I think they are looking at me. Shame on me!!!I have to get over that and hold my head high. I will work on that next time go shopping.

Nancy,
How many weeks are you having the taxol. I have to take it for 12 weeks on a weekly basis. More fun times coming up.

Skye,
Glad you are feeling better. I didn't know that gas was a s/e of taxol. I guess they do not tell us all of the s/e. Was the gas and nausea as yucky as it was on A/C?

Amera,
That's great you will be finally finished with A/C on Thursday. That will be worth celebrating at a future date. I hope it will not be too bad this time. I know each one is hard, but at least you can know that it will be your last one and you will feel much better in a week and it will all be behind you.

Time for dinner.
Viddie

Caya

Hi all,

Wig report - I have 2 - one curly,(which is how my hair is naturally) and one one straight - (which is how it looks when I get it blown dry for a special occasion) - I always wear one when I go out- but I work out of my house, so at home it's usually a little cotton knit cap I bought at the wig store, or I go au naturel - bald - DH says I look like Kojak - some friends came over yesterday to visit and I had the curly one on - the husband asked me straight out if it was a wig because it looked so much like my real hair! As it gets warmer, I will probably buy more scarves, as I will not finish chemo until May 10th, so I doubt I will be ready to debut a short "do" until after the summer...
Rebecca, I guess it is Taxotere discussion day - I get my first infusion next Thursday (March 29) - doesn't sound like too much fun, but what exactly about all this has been fun?
Did a workout video today for 45 minutes, it felt great. I'm really going to try to do one every day or two until my next infusion...
Have a nice evening ladies, I'll check in later.
Caya

MrsShakur

Thank you for all the support and prayers.

I called my Dr regarding the port and he stated the reason they rather use the port is that by me being so think and having very small veins that if the medication they are going to us leaks into my tissue and skin area it could do alot of damage to my skin and tissue. So I don't have added problems he wants to go with the port something I could deal with for only 4 infusions. And that's fine with me, I rather deal with a port than to have to deal with damage tissue and skin because after it's all said and done the port comes out and on to the next, but if I get tissue and skin damage that can cause just unnecessary problems than I can deal with right now.

For all my friens who are having their last chemo or close to having their last chemo, congrads. And I'll continue to prayer for all of you as I have been.

As for the wigs, I plan on buying one, my oldest daughter is shaving her head, I told her she doesn't have to do this, but she said, she can't share my cancer or my treatments, but she wants to be able to share something with me so I know I'm not alone and don't feel so bad about it. She said we can shop for wigs together. She's a wonderful, caring person.

Chey

Anonymous

Wow - I fell behind for a few days and you ladies have been BUSY posting!! It will take me all week to catch up - I love having all these posts to read

Joni - I love the scrapbook idea. I'll send something to you this week.

Anonymous

Lynn - I (or my insurance company actually) spend $400+ on a nice wig that I have never worn. Before I started chemo I was obsessed with getting just the perfect wig and I was so sure I'd just die to go out without it. But once my hair was gone I had absolutely no desire to ever wear it. If I still had my old dressy office job it would be different - but now I work from a home office. I always wear scarves.

Why is it that the grocery store seems to have the highest concentration of turtle faces? I avoid that place whenever I can. Hubby's getting good a shopping - I make the list

Nancyab

Hi Viddie, Yes I am having 12 taxol tx weekly. I have 1 down and I have been having really bad cramping. almost like menstral cramps. Sometimes the pain is so bad I think I have an ovary exploding. I never know whether this is normal if I should let the Dr. know. Some of the aches and pains are hard to describe.

Anonymous

MrsShey - I am so sorry you are having to deal with so many challenges all at the same time. If I've learned anything recently it is that life and all its ups and downs continue on with or without us! I agree with what the others said about having a port. I've gone through 3 chemo treatments so far without one and that includes leaving my IV line in for 4 days each time b/c I go in for fluids for 3 days after chemo. My veins were hard to find to begin with and they are in pretty sorry shape now, but I think they will hold out for my remaining 3 treatments. I really didn't want the port and told my onc that. He was fine with me not having one.

I am glad to hear you will have the oncotype test. I am hoping that the results are positive for you. You certainly deserve some good news.

vlfr

Lynn, I have a wig and I wear it once or twice a week. It is scary the first time but do it. You'll be amazed, no one will even know its a wig. Mine is not heavy, scratchy or uncomfortable in anyway. One of the reasons I wear the wig is when I don't want the focus on me and my cancer. For example I wore it to my son's soccer game. That was his time to shine and I didn't need to spend my time in the stands explaining my treatment or having people feel sorry for me. Obviously I don't wear it everywhere but there are just times when I don't want the attention.

Nancy, I am doing taxol (now Braxane) every week on Thursday. Thursday night is not great. Friday and Saturday are okay, Sunday and Monday are very achy. Tues and Wed are good. I hope you are as lucky with the se.

I visited the surgeon today. My 3.4 cm tumor is down to 1.2 cm and I will be having a lumpectomy when I finish chemo. Can anyone who had a lumpectomy give me an idea on the recovery time. Im not sure what to expect. I know the surgeon will also take sentinal nodes. My mother in law wants to come help out. Im not sure how much help I will need.

Vicky

vlfr

Nancy - in did have cramping like Menstral cramps just once after Taxol #3. It may be the horrible taxol gas that is making you cramp. I've also had that se.

Vicky

Anonymous

Vicky - I had a lumpectomy (but then had a mastectomy about 2.5 weeks after) so my info is limited. I was pretty much back to normal after 2 weeks as far as working and taking care of kids and other household stuff. The first week I couldn't really lift much of anything with the arm on the surgery side. I was pretty out of it for the first day or two from the anesthesia. But - in hindsight it was a heck of a lot easier than a chemo treatment. I had the sentinal node thing with my second surgery. They took out 4 nodes. I don't think it added too much to the recovery time.

All - just saw this article on sleep (or lack of). It's somewhat humorous: http://www.thebreastcaresite.com/eendcom...7d?OpenDocument
I definitely shared the authors ability to sleep like a rock pre bc, but like most of us I don't sleep much at all now (except on those nice ativan days).

meliaanne

Hi All,
Mrs. Shey, I am so sorry for all your heartache. It seems very unfair, but then nothing about this is "fair." But for him to cause you such anguish is very sad.

I do have a wig and wear it everyday. It isn't much worse than wearing a hat in terms of comfort. I wear it to work and then around town on weekends. Most casual acquantances don't know I have bc, and I can't stand to discuss it with everyone; it just wears me out. And no one at work except my boss knows, so the wig is necessary. But the minute I get home I put on a scarf. Much worse than the wig,though, is the prosthesis and bra. I still have a big seroma and I think that's why the bra is so uncomfortable. I can't deal with having it drained until I am done with chemo though.

I have my last ac on Wed. Today when I went for my blood work I nearly vomited, just from seeing the building. I see the dr tomorrow, ac wed, then three weeks off til my twelve weekly taxols. It all seems like so much right now. I know I can do it, but sometimes I get very depressed at the thought of all that lies ahead.
Melia

Lynn12

Jan, thanks for the article and I'm sure most of us can relate..except I had sleeping issues before bc, so they continue (except on those nice ativan days)

Lynn

Lynn12

Melia,

You'll be at a huge milestone after your last AC on Wednesday. Remember, one step at a time! Like you said, you can do it!

Lynn