Starting Chemo in JAN 2007

NOLONGERREADINGORPOSTING · February 2007

Amera,

Your onc sounds almost too laid back for me!!! Strep is no piece of cake, even if you're not doing chemo!!

Anyway, the real thing that makes that turban look good are the bangs and long earrings. You can wear bangs with anything; they give out lots of free knit caps at the chemo clinics and I have quite a collection now. You can get the bangs for about $17 from Chemo Savvy and if you buy a cheap white turban, it makes it easier to wear scarves, because it adds a little flattering bulk and you can tuck lose ends into the side. One look I especially like is to take a colorful scarf, and tie it near the top of the head to the side, and make a kind of bow or flower with the knot. Then you can tuck in the ends.

Here is where to buy bangs...they come in a huge range of colors:

http://www.chemosavvy.com/item.asp?n=b001&d=7&b=1

Rebecca, that sounded like a very scary trip to the ER. Glad you're OK. I think we're all due for one trip per chemo treatment to that overcrowded place; they make it look so exciting on TV..it's really not the "Emergency" Room, it's the "Waiting" Room and it's very boring!!!
Mizsissy

Rebecca · February 2007

Ok Amera...show and tell time :-)

The antibiotic they gave me was called Levaquin...I have never heard of it. You take it one time a day. The syrup (which is GREAT) is Histussin HC (contains chlorpheniramine, hydrocodone, and phenylephrine). They said it would make me drowsy, but it didn't. I guess the hyper-ness from albuterol inhaler just balanced it out :-). What a strange medical deck of cards we build.

Take care of that cough...that is how I started, and I could not shake it. It then became something more sinister (bwa-ha-ha-ha).

Lynn12 · February 2007

Rebecca,

So sorry you ended up in the ER but glad you didn't have to stay. I understand what you mean about not letting this control your life. I went to see my dd cheer tonight at school and have gone a couple other times while on chemo. I probably shouldn't because of the large crowd in the stands, but I don't want to miss seeing my daughter either.

Amera, hope you feel better soon, take care of yourself and get better. It's awful to hear of you (and others) having other medical stuff to deal with on top of the chemo. As if chemo isn't enough!!

Has anyone that's premenopausal had a hot flash yet? Should we expect to with chemopause? I know that tamoxofin has hot flashes as a se, but wondered if I'd get them during chemo as well.

Lynn

Rebecca · February 2007

I have heard that you can expect hot flashes on some types of chemo. I imagine any time that you interrupt the normal hormone cycle like that, hot flashes will result. I am dreading it as well. I am also seriously dreading the prospect of menopause at 35...I have been pretty much told that I will be put into menopause artificially if my body does not do so on its own. UGH

Ihopeg · February 2007

Lynn,
I haven't lost all my hair yet either. It actually seems like the 1/4 inch on my head is getting alittle longer. I shaved it twice already.I haven't had any hot flashes yet. My runny and stuffy nose is really getting on my nerves.
Amera and Rebecca,
I hope you feel better soon. It seems so hard not to get an infection. My hands are so dry from all the washing. Does anyone else have extremely dry hands and feet? Also one of my fingernails looks kind of blue at the base. I hope that doen't mean I will lose my nails too. ilene

Ihopeg · February 2007

Mizsissy,
I forgot on the earlier post to tell you how great you look in your turban. You go girl!! ilene

ritajean · February 2007

Oh my gosh, Rebecca! What a trip! I'm so glad things worked out for you, though and that you didn't have to stay. On the positive side of things, your daughter did fantastic and is a real little doll! I loved the pics.

I am actually going to the bowling alley today to bowl a few games. Our ladies league is not a sanctioned league, so if I decide I can only bowl one game, it's fine for me to quit. I need to get out of this house. Don't know if I'll be able to do lunch after bowling with the gals but am making an attempt to join the ranks of the living today! Like many of you, I refuse to let BC dictate my entire life.

Mizsissy.....I still have quite a ways to go on this journey. I just finished #2 this past Friday. I have 2 more treatments before radiation and then 33 radiation treatments. Then if I complete the regiment, I still have 2 more chemos. Since chemo was my choice (I was completely in the grey area), the onc said any of the chemo treatments that I could get through would probably help but they couldn't assure me that it was even needed. I am shooting to finish the radiation and then reassess my decision. If I do them all, I will be finishing up in mid July. The onc said he would be O.K. with stopping the chemo any time and going straight to radiation, but felt the chemo would give me a slight advantage. According to him, only 1 out of every 20 ladies in my situation actually need the chemo, you just don't know who that 1 is that needs it. Thus I opted to give it a try. Each chemo session gives me a very slight advantage, so I'll see what I'm like after the radiation and that may be the end for me.

I have not yet lost my hair. It is thinning but there are no signs of excessive hair loss yet. I have my fingers crossed on this one!

Talk to you all after my day away from the homestead.
Hang in there, gals.

Rita

robertin · February 2007

I'm glad to hear you're okay Rebecca. A friend of mine had a bloodclod that travelled through her heart. It was touch and go for a while. I've had my cough for 3 weeks now, and I'm so tired of it. This second chemo was a lot harder on me. There was such exhaustion, and I don't know if that was the underlying cough, or if it was just one of the side effects. Here I am starting my second week and my daughter had to take me to work, because I couldn't walk from the parking garage to the building where I work. I'll mention it to the nurse this afternoon when I do my bloodwork.
My husband was playing with my daughter's hair last night, and he said, "you know I can't do that with your mother's hair anymore." Then he thought he could still do that, and jokingly pulled softly on my stubbles (1/8 inch) and they came right out of my head. That shocked him. The bald spots are getting bigger.
Mizsissy, I've ordered a scarf and a headband to keep the scarf in place. It comes with instructions on different ways to tie them and I'm looking forward to experimenting with it.
It's spring time here, and that brightens even an exhausting day. Wish you guys a sunny and happy day.

Anonymous · February 2007

Melia - I do go bald around my hubby and the kids, but I try to keep it to a minimum. Usually just in the mornings before I get in the shower and when I go to bed. My stubble is abandoning ship rapidly this week and I've noticed I'm staying covered up more.

Anonymous · February 2007

2nd chemo was a little better than the first. It started off bad with serious dihirehea and stomach cramps. Sat and Sun I went in for iv fluids and Monday for the nuelasta. The IV fluids over the weekend made a huge difference since I felt too sick to drink much. Still feeling crappy today (day 4) but a little better than last time.

Lynn12 · February 2007

Mizsissy,

Nope, I'm definitely not an early finisher. Mine are 6 tx 3 weeks apart, so my last infusion is scheduled for May 4th (seems so far away).

Then I go to rads. Even though I had a mastectomy, I still needs rads because of the large tumor size (7.5cm). Is anyone else that had a mastectomy need to do rads?

Lynn

Robbin65 · February 2007

2nd chemo a little better for me also since they lowered my dose. Still feel like crap, but no fever this time.

I started my period yesterday and my appitite is kinda weird. I'll crave something I don't have in the house. I'll crave something once and then once I have it I can't stomach the thought of eating it again. I have to eat something different. I feel better when I do eat. But still, no nausia.

2 more to go and I'm done with the chemo.

Yesterday I went out in public with one of my hippie scarfs on. Everyone was looking. Is it THAT noticable? I look like an official cancer paient (spelling) now for sure.

Robbin65 · February 2007

Oh yeah, what's up with Britney Spears???? Who in thier right mind would shave their head just for the heck of it???

Lynn12 · February 2007

My dh offered for me to buzz then shave his head if I wanted because I jsut can't do the 'shave' part as of now. We chuckled as I told him that we can't do that because then everyone would think he's a Brittney follower!

Ihopeg · February 2007

Lynn,
I have to do rads after I am done the 6 rounds of TAC. I haven't met the radiation doctor yet. The onc said I need the rads because so many lymph nodes were involved. ilene

Lynn12 · February 2007

Ilene,

Yep, my Onc told me rads w/ mastectomy if tumor is > 5cm or there are 4 or more positive nodes. It's kind of scary thinking about rads with no breast there. I'm praying they really know what they're doing.

I haven't met my radiation Onc yet either. I plan on asking my Onc next time I see him when we'll make the first appt. I have it in my mind that I want to finish up chemo (last tx on May 4th) and radiation by the end of June so I can hopefully still have 2 months of summer and not be in treatment. Not sure how realistic that is but I don't want to get done with chemo and then wait a month before first rad appt.

Lynn

ritajean · February 2007

Lynn,

I know all doctors are different but my radiation oncologist told me that he couldn't do the first radiation treatment until 3 weeks after my last chemo. He said he could do the preliminary work....tatooing the skin to show machine positions, etc., so that we were ready to go at the end of the three weeks.

Rita

meliaanne · February 2007

Hi All,
Sometimes this all gets so wearing, mouth full of blisters (in spite of biotene and perscription mouthwash), itchy head under wig (which needs to be worn at work), food tasting nasty, fatigue ... I look back 3 months and felt great, had no idea a routine exam would end up with a bc diagnosis. I know I have lots to be grateful for, but the past few days have been tough. And next week I am back for my third a/c, one more after that, and then 12 taxols. This too shall pass ... I nearly kicked my husband out sunday when his alarm kept going off every 15 mins predawn. I ended up getting up at 4:30 am after a monumental tantrum. He forgot to reset it after his early Sat run, but I had to keep waking him up to turn it off. I haven't caught back up on sleep yet ... probably why I am so cranky!
Melia

Amera · February 2007

I was told a month between chemo and rads. I have had the initial consult with the rad oncologist. He said to call when I approached my last chemo so we could get a schedule together. I guess they don't want to start when your counts are low--too much risk of infection from the rads or something. I am done with chemo March 21--but won't consider myself really done until about 3 weeks out when my counts are back to normal. This winter cannot go by fast enough.
Amera

Amera · February 2007

Robertin, I remember the early springs in Lawrence. I think by March, the flowers and trees were in bloom, and our nutty neighbor would be out on the back deck doing yoga in his underwear. Memories...
Amera

ritajean · February 2007

Oh Melia, my heart goes out to you. You've had quite a time of it this time and I know it seems so unsurmountable at times. Hang in there. Although it s**** bigtime, it's only temporary and spring is just around the corner. I felt so terrible on Sunday that I just didn't care what happened to me. Finally the nausea passed and I even bowled today. You can make it. Just log on and vent when you need to because we are here.

Don't know what your onc told you to do for the mouth sores but mine said to mix water, hydrogen peroxide, baking soda, and salt and swish it around as many times as possible each day. I alternate between that and the biotene.

Hang in there.......(((((HUGS)))))

Rita

Lynn12 · February 2007

Yes, I'm assuming that I'll need to recover from the chemo before starting rads. I just want to make sure I've already started the process, get the prelims and appt.'s done and be ready to start as soon as I can when counts are up.

jonimb · February 2007

Hello everyone:

I had a rough weekend again. My chemo was Monday Feb 12, and I was fine until Friday, and then I got sick in the afternoon, and basically felt ill all weekend.

Does anyone else get that feeling like you should be getting your period, you feel crappy, and the one breast I have left gets heavy, but I don't get my periods. Maybe that was part of my problem this weekend. The last period I had started the day I had my 1st chemo Dec 29.

Melia, the thing I have found best for mouth sores is Canada Dry Club Soda. Swish it around in your mouth, like a gargle. If you swallow any it will also help with any upset stomachs. Worth the try.

My onc told me that it would be 1 month after my chemo before I started rads, but that they would be giving me the tattoos prior to that. I will be having between 30 & 35 rads. Anyone else?

Robertin, how's your cold?

In the paper today, they said there was a "Ray of Hope" for the DCA drug, they have had $30,000.00 of private money donated to test this drug out for Breast, Lung & Brain Cancers. I sure hope they proceed with it, even if the big drug companies are not interested.

Hope everyone is having a good day.

NOLONGERREADINGORPOSTING · February 2007

Hey Joni,

I've been watching DCA very interestedly now for the past month and I recently read that trials will be starting at the University of Alberta.

I wonder if US women will be allowed to join? I have some friends here in the US with advanced cancer who could surely benefit from this...even all it were was a new hope, but it sounds more promising than that:

http://www.depmed.ualberta.ca/dca/

It seems to make more sense that research would happen in Canada, where you have a national health system that is interested in containing costs...here in the U.S. the name of the game is PROFIT, and the cost of medical care continues to spiral in order to satisfy the drug companies. Now isn't it ironic that we can't get quality for the sake of the profiteers!

Mizsissy

jonimb · February 2007

Mizsissy:

I'm going to meet with my Oncologist next week, and I will ask him. He is the head of oncology for the Alberta Cancer Board, so if anything is coming down the pike, he should know about it.

DCA has already been used in humans to treat other types of rare illnesses. The side effects are almost NIL.

I think I have to start my letter writing.

I love your turban and hair. I went into the site, but I'm having a hard time getting a Canadian order thru. I'll try again, but I may have to get one of the American girls to order me one, and then I'll send down them a cheque.

Big Hugs...Joni..hope your're feeling better.

NOLONGERREADINGORPOSTING · February 2007

I'll do the chemo savvy for you if you want, after I get out of this chemo fog. They don't take credit cards? Whatever, let me know!

Please do find out what you can about DCA for American from the onc...I've got one friend who is desperate, it could save her life. Let me know!!!!

Thanx,

Mizsissy

Rebecca · February 2007

Hey Lynn and IleneI am actually not sure if I am going to have to do rads after chemo. I wish my onc would give me a straight answer about it. My tumor was only 3 cms, and I had one involved node, but my margins, though clear, were very close. I got the sense that he was leaning towards the rads, maybe he will let me know as the time gets closer. Blech.

You poor thing Meliahang in there you are almost there! I hear that the Taxol is not as bad as the AC. Try to get some rest, I am sure it will be brighter in the morning

I am glad that you went bowling Ritaand I am glad you had a great time! You are so upbeat about all of this that it is positively contagious, and I KNOW you are going to whup butt.

Okgot to vent now.
My father called yesterday and actually had the NERVE to scold me for overdoing itwhile at the same time not offering to DO anything about it. That makes me so furious that I can not even speak. As I stood there on the phone, and listened to myself defend my choice to go to Ohio, and explain that there was NO WAY that I could take it any easier than I do (kids have to go to school, and life goes on chemo or not!) and that there really was not anyone here to do these things for me (DH goes to work, and is gone from 6:30AM to 7:30 PM) it was all I could do not to hang up on him. If he is so concerned about me, maybe he could get off his butt and come help me (he is semi-retired, and lives about 60 miles away). Of course now he wants to come to visit me tomorrow, and part of me wants to tell him to take a hike. I do not think I can take an entire afternoon of him sitting on my couch telling me that I need to rest while I take care of household business. Grrrrrrrrrrrrrrrrrrrrrrrrrr

The last thing I need right now is family politics. I hope that none of you guys have to deal with this garbage. Sometimes I feel like I am the grownup and my parents are the children. You would think that they would be a bit more understanding considering my situation.

Well, this bronchitis really has got me downI feel like crud, and of course it was business as usual here at home so I had to run like a maniac all day. Maybe that is why I am so grouchy about this. I think the meds are helping a little, but the infection has not cleared yet. I guess I should go sit in a steamy bathroom for a while and see if that helps. Hope the rest of you are having a nice eveningI will check back later!

Thank you all for being there.I truly think this is better than any support group I could find. You are all very special people and I count myself quite lucky.

Amera · February 2007

Rebecca, sorry you have to deal with doubting relatives. I have had to explain about a million times why I'm doing this or that and not what they think I should be doing. It does get exhausting. I think there's so much in the media about BC these days, that everyone's an expert.

And about that cold: I have heard from no fewer than 6 people that the 10 day cold/cough/sore throat is going around. And these are folks from across the US. My oncologist says that it is a really strong virus that doesn't seem to let up at all until the very end. And for what it's worth, I'll bet you'd have ended up in the ER trip or no trip.

I feel like a baby whining about a simple cold, but honestly, I haven't felt this bad in a long time. I don't think even the chemo has wiped me out this much. I am sure we are having a harder time fighting it than most.

Okay, it's 7:15 and I'm ready for bed. Sigh...
Amera

Aladora · February 2007

Quote:

Mizsissy:

I'm going to meet with my Oncologist next week, and I will ask him. He is the head of oncology for the Alberta Cancer Board, so if anything is coming down the pike, he should know about it.

DCA has already been used in humans to treat other types of rare illnesses. The side effects are almost NIL.

I think I have to start my letter writing.

I love your turban and hair. I went into the site, but I'm having a hard time getting a Canadian order thru. I'll try again, but I may have to get one of the American girls to order me one, and then I'll send down them a cheque.

Big Hugs...Joni..hope your're feeling better.

Joni, can you keep me posted on this please?

Oh, and they sell the turbans and bangs at my local British Columbia Cancer Agency, in the salon. Do you have somewhere like this in AB? It's where I go for all my appointments and chemo. If not, let me know and I can talk to the woman who runs Salon Revive about shipping out to you.

re: Rads. I was told that I would start 1 month after chemo unless my genetic results were in and I was choosing to do a bilat mast and ovary removal in which case I would not need radiation. To be honest, I will more likely than not go for the surgery no matter what, with my family history, if they do not find a known mutation in me it's only because they haven't found it yet! I think that I will fall on the floor in shock if it turns out that I am not BRCA 1 or 2 positive.

Besides, I'm having reconstruction done no matter what, this way I get new porn-star boobs AND a tummy tuck!

Many hugs to everyone here. I check in here as often as I can but the terrible two's have started 5 months early so I don't have a lot of time to post.

If someone really wants to contact me, you can always shoot me an e-mail!

Susan

meliaanne · February 2007

Amera, Rebecca, and Joni: maybe we will all feel better tomorrow. This is not easy, is it, especially if we all have busy lives and are used to feeling well! Rita, you are always so positive .... I don't know what I would do without this board.
Melia

Starting Chemo in JAN 2007

Comments

Categories