Starting chemo January 2009?

DH and I went to a class at our hospital (Mass General) on Chemo yesterday.  They have great support stuff like this in their resource room but the classes are usually midday, probably so you can do them during a lunch break but they really break up the day otherwise.  The class was helpful.  Mostly stuff I knew but good to talk to a pharmacist about the drugs and to have DH hear what stuff to nag me about (calling the doctor if I have the slightest sore thoat, am more that mildly nausous for more than a day, washing my hands obsessively, putting bandaids and ointment on the littles cut, ect).

I went to the NCCN website to try and figure out what standard treatment would be for me because I am very confused about TC vs AC and 4x vs 6x and every 2 wks vs every 3 wks.  I try to do online research and I am not sure I understand what I am reading because it seems that oen study says "A" is not helpful for Her2 negative and another says that "T" is not helpful for Her2 negative.  I have found nothing explain why you would go with 4X or 6X or AC plus T rather than AC or TC, at least not that I understood enough to know it was talking about that.  Is dose dense mean every 2 wks instead of 3wks?  And is that suppose to be better because the cancer has less time to regroup?  Anyway, I could not figure out what the NCCN site was saying either.  I went into law because I don't do math/science. 

But, while I was trying to figure out where to go on the NCCN site I stopped on the second page of the Breast Cancer section, where the panelists are listed.  I was curious to see if any doctors from the Boston hospitals were represented.  Well my second opinion doctor - who I am planning on going with is on the panel.  Gives me even more faith in trusting his opinion though I still want to know the reasoning behind it, at least as well as I can understand since my brain seems to turn off whenever I read more than a few paragraphs of these reports on scientific studies.

Today I want to make lots of necessary phone calls. I need to call the doctors today and let them know my decision to go forward with chemo.  Then I want to call a local photo studio and make an appointment for a family sitting this week or soon after.  Then call my stylist to have my hair cut and styled in its current style before that appointment, which is rather a waste of money since I will  have it cut into some super short style within 2-3 weeks and then lose it all, but I want a nice before photo.  Then I want to make an appointment for a wig consultation at the hospital boutique.  I also want to call a local organization that install gardens for people with breast cancer to raise their spirits, indoor or out. I want outdoor which they won't do till spring when my treatment should be over but I will still be bald or baldish and tired.  I think that thinking about a garden all winter will help me to stay focused on the future.  I need to think forward and not backward.  Anyway, time to go if I am going to get anything done today.

DH and I went to a class at our hospital (Mass General) on Chemo yesterday.  They have great support stuff like this in their resource room but the classes are usually midday, probably so you can do them during a lunch break but they really break up the day otherwise.  The class was helpful.  Mostly stuff I knew but good to talk to a pharmacist about the drugs and to have DH hear what stuff to nag me about (calling the doctor if I have the slightest sore thoat, am more that mildly nausous for more than a day, washing my hands obsessively, putting bandaids and ointment on the littles cut, ect).

I went to the NCCN website to try and figure out what standard treatment would be for me because I am very confused about TC vs AC and 4x vs 6x and every 2 wks vs every 3 wks.  I try to do online research and I am not sure I understand what I am reading because it seems that oen study says "A" is not helpful for Her2 negative and another says that "T" is not helpful for Her2 negative.  I have found nothing explain why you would go with 4X or 6X or AC plus T rather than AC or TC, at least not that I understood enough to know it was talking about that.  Is dose dense mean every 2 wks instead of 3wks?  And is that suppose to be better because the cancer has less time to regroup?  Anyway, I could not figure out what the NCCN site was saying either.  I went into law because I don't do math/science. 

But, while I was trying to figure out where to go on the NCCN site I stopped on the second page of the Breast Cancer section, where the panelists are listed.  I was curious to see if any doctors from the Boston hospitals were represented.  Well my second opinion doctor - who I am planning on going with is on the panel.  Gives me even more faith in trusting his opinion though I still want to know the reasoning behind it, at least as well as I can understand since my brain seems to turn off whenever I read more than a few paragraphs of these reports on scientific studies.

Today I want to make lots of necessary phone calls. I need to call the doctors today and let them know my decision to go forward with chemo.  Then I want to call a local photo studio and make an appointment for a family sitting this week or soon after.  Then call my stylist to have my hair cut and styled in its current style before that appointment, which is rather a waste of money since I will  have it cut into some super short style within 2-3 weeks and then lose it all, but I want a nice before photo.  Then I want to make an appointment for a wig consultation at the hospital boutique.  I also want to call a local organization that install gardens for people with breast cancer to raise their spirits, indoor or out. I want outdoor which they won't do till spring when my treatment should be over but I will still be bald or baldish and tired.  I think that thinking about a garden all winter will help me to stay focused on the future.  I need to think forward and not backward.  Anyway, time to go if I am going to get anything done today.

CRAP!!  Sorry for that potty reference but I was trying NOT to join your group... (no offense, I'm sure you are all wonderful ladies (and men) and I know you don't wanna be here either!!!!! LOL).... But, okay, I just got a 2nd opinion on whether or not to do chemo and the consensus is.... yeah... 4 rounds of AC, followed by Arimidex will help my chances of survival.  I am one of those gray area cases ... my onco score came back an intermediate 22  (otherwise I'm not sure chemo would have been in the picture)........so here I am.... joining the January group.... !!  This site has been a godsend for me from day one and I'm happy to see all you chickies in here have already bonded together to help each other through the coming months..... I'll play too if you don't mind...!  Yikes!!  I'm scared to death.  Is anybody else scared to death??? First treatment will be in the next two weeks I'm sure ... calling my onc tomorrow to set it up.  I had a BILAT December 2nd and slowly recovering.... he wanted to start chemo if I chose to 6-8 weeks out of surgery so the time is fast approaching... dang it... I wanted to go to Vegas and whoop it up before I had to start chemo but I don't think I have time......Good wishes to all of you guys.... let's help each other through this... we can do it.... (that sounded stronger typed than it does coming out of my mouth!! LOL)

Hi all:

Thanks Brenny and Snowbird for the advice on what to take to chemo.

Just got back from round 1 of AC (plus maybe Avastin--won't know til after I'm done with Taxol). Filled the time talking to nutritionist, social worker, nurse, etc. Plus, my roommate is going through the same trial as me, and she just finished the AC with the worse SEs being some nausea, but not enough to keep her from eating what she wants, and fatigue, which increased with each treatment. As part of the trial we get Taxol every week, which should be easier.

My WBC started out low: just 4.6, so I hope the Neulasta shot tomorrow helps boost it up. No doubt I have some little infection somewhere in my body.

I'm already having a metallic taste in my mouth. My roommate said to suck on olives. I hate olives. Also, she brings a brew of cooked beets juiced with an apple and some carrots to drink during chemo. I think I'll try it!

Chris--thanks for the update on AC SEs. Hope your new meds continue to work.

Jess--sorry about the port difficulties. Sounds like you've rebounded in spirit! I go to the ACS tomorrow for a freebie wig. There's a local haircut place that will do a short cut for free for us cancer survivors. I bought 2 hats yesterday and thought the same thing about wearing to school--NOT allowed (well, maybe for me!).

Good luck to everyone with new treatments, ports, back pains, no-show drugs. Wow. We will be stronger for this!

kim

Holtbolt---You are in the right place, and i certainly don't take it personally that you don't want to be in the middle of this, but we will help each other get through this. 

Mim07- glad to know you did not experience an anxiety attack.  I am starting a plan of walking and slow weight lifting while I heal from all tis.  I am not a sitter and part of my angst has been just that I am supposed to just rest so i can heal faster. 

BerkeleyKim--I think if the wig I ordered looks real geeky and fake ,  I am going to wear an exotic hat or something.I mean, i can't really "do" my real hair, who am I to think I can "do" a wig?  (LOL).   I did find a wig, but whenever I try one on it looks just like a really bad wig.....How in the heck does Racquel Welch do it? 

I don't know why, but when i think of "doing" my hair, I remember trying to crochet scarves in middle school- a mess! 

I appreciate some of the suggestions about listening to cds that encourage us to think positive and really take the chemo step as a part of the process toward kicking the cancer beast to the curb. 

Kathy, they put my port on the left side-the tissue expander was just too close for the doc to feel comfortable.  I do feel better on day two fo the port-It doesn't stick out so much.  The ice helped, a good night's sleep and the meditative chant in my mind that I am taking the right steps toward leading a great and healthy life for many years on down the road.

Lisa-I love California.  I lived there for many years--Loved the beach and long walks. Glad you are feeling better

Hugs to all.

Lisa, thanks for the info on Throat Coat. I sounds promising. Can you buy it locally or do you have to order it online? I found even Amazon carries it!

Had my first Neulasta shot yesterday. What a whopper! I think I managed all pretty well until exhaustion hit and I went to bed early. As a precaution, I took one teensey Lorazepam which had been prescribed for nausea, anxiety and to aid sleep - what a mistake! I awoke feeling like I'd been run over by a mack truck! I'm sticking with Tylenol as needed from now on...  Youza! Does anyone know if these get easier or worse with each one?

Renrel, I LOVE your spiritual approach to this... Mind if I borrow it??? It sounds like your DH is much like mine...  he's out playing tennis now but will come back shortly and drag me out for a daily walk whether I feel like it or not! I'm lucky to have him. He's been my exercise tyrant coach since my mastectomy and now I feel quite confident I can take a full golf swing - our "goal"!

Brenda, hope you're recovering from your cold & sore throat. It seems we have much in common (age, dx, location) and I wish you well. I envy your acceptance into a trial too. I was recruited for the TAILORx trial, but finally rejected because my Oncotype DX score was ONE POINT over their cutoff...  This journey is bad enough without adding REJECTION to it too! Sigh.

How's this for an ironic chuckle, ladies and gent...  My DH and I went wig shopping yesterday (insurance covers 1 per year, so I really wanted to get 2008's already!)...  Found a really GREAT one...  my color and even my style...  very affordable...  we both agreed that it was "the one", even though it's name was the same as my DH's ex! Of all the wig-names and all the luck! We decided it was too perfect a match for me to pass up so we'll just give it a new name...  since we never had children together, this has actually been kinda fun!

Carry on...  Thanks for all for the mutual care and support...  Happy New Year!?!?! 

Lisa - I live on Oahu.  Its not as pretty as the other islands but with all the testing and treatments that I will be going thru, its better to be on Oahu where all the major hospitals and clinics are (as you know from your Kauai adventure).

I would like to wish all of the January Jewels a Happy and Healthier New Year.  It's certainly going to be one wild ride! 

Snowbird, thanks for the encouraging words.  I figured why not with the trial.  If it is something that may help me or someone else, it is worth it.   Cold is really getting on my nerves now.  I have been in Florida for almost 14 years and have not had a cold since I got here.  (From upstate New York, so I had plenty of them up there.)   Talk about luck.  If I didn't have bad luck, I wouldn't have any at all.   To get this the week I was supposed to start chemo is crazy. 

Oh well, as I said before, the drug no show is the best thing that could have happened.  Imagine having a cold like this on chemo.  AUGH!

Saw the BS today to have some fluid drained and she said the same thing.  Hopefully, by next Thursday, I will be good as new so they can load me up with chemo.

Going out for dinner in a few so Happy New Year to everyone.   I hope next one is better than this one.  

Hugs to all!

Hi there,

I am already 5 weeks out from my last chemo. I received 4 rounds of A/C and 4 of Taxol.  I just wanted to drop by to give you some encouragement and to share some info based on what I have read in your postings.

When I first started wearing my wigs I only knew about wig caps but later found this website about another special product:

http://www.aaa-medical-wigs.com/chemo-treatment/comfy_grip.html

This made me much more comfy.  My hair is now growing back.  It started growing back before I was finished with my Taxol.  I am still wearing my wigs not only because my scalp is still showing but also because it is cold here in Paris!

For those who were interested in cleaning services, there is a free one for those with breast cancer:

http://www.cleaningforareason.org/index.html/index.html

Unfortunately, I could not use them because of the long distance they would have to come     but since they are located all over the states, this could be used by quite a few of you.

Best wishes and many blessings to you.  Wishing each of you a very healthy, happy New Year!

Roya

I guess I'll be joining this group as well. I had a lumpectomey 12/19 and will have T/C starting 1/15 followed by radiation.   Seems like a great group to be joining, although like everyone else I would really rather not. 

I've looked for wigs the past two days and have found a place that makes custom wigs that will match your hair.  Luckily my insurance pays for the cranial prosthesis - whatever - that always makes me laugh.  Still not sure if I'm going to be able to handle the wig or not.  My hubby already shaves his head and he thinks its going to be cool we have the same haircut - told me to use some of his doo rags and put rhinestones on them!

Holtbolt - have fun in Las Vegas!  My hubby and I went the weekend after I was diagnosed(the trip was already planned).  It couldn't have been better timing- took my mind off the whole C thing.  We definately laughed, had plenty of beer and actually didn't lose every penny we took.  I hope your trip is great!

Hi Again Jas-Man!

I'm trying to talk hubster OUT of shaving his. Just seems like a waste of a perfectly good head of hair. Mine will grow back--he has no such guarantee! I will shave mine when the time comes. I may take a page from the Road To Hell thread and make it a party with friends and fun. I may do it with my little girl and my hubster. It may be hubster, me, a box of kleenex and a bottle of Valium. I don't know yet. But from everything I read, it's a major annoyance once it starts coming out. I'm  going to go with it and not fight it.

I just had my hair cut for my rt. shoulder repair, knowing it would be hard to handle after that. It's shoulder length for the first time in over 30 years. After the holiday, I will be making weekly appointments with my hairdresser, who is also a friend. I will let her "play" in it in ways she's always wanted to, and experiement with the "growing out" styles available to me--but every week, I will go in for a new and shorter hairstyle-- until D day.

It's not because I want to prolong having hair though. It's because I have felt so out of control since this whole thing started (not good for a control freak like me!) that I have to do SOMETHING my way. I also want to get used to not having much. I also truly want to see what some of my options are while it grows out. But the bottom line for me is, I want to do it on my terms. My way. It's not much, but to me, it's a definitive way I can fight back--and I'll take all I can get right now.

While a couple of friends have promised a luncheon wig shopping trip, I don't think I'm going to go that route very often. I have notified everyone who ever cared about me that I'm starting a baseball hat collection--and I want the bills pre-bent, haha!

Fighting New Year, everyone. 2009 is the year we get our lives back.

All My Best,

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