Starting chemo January 2009?

Hi Jewels... stopping in to say hi... I decided to take my son to Minneapolis July 21-26 to visit our friends there before school starts (8/11).  He misses his friends (and I miss mine there) and I thought it would cheer him up in light of the big disappointing concert adventure (still no reschedule date)...

Jess - congrats on being done with rads! woohoo!

Phyllis - happy anniversary!  I went to Kings Isle recently and rode a couple coasters hanging onto my hat the whole time.. (not big coasters mind you.. the small ones) ... lol.  I was very nervous about being rattled around .. .I still feel like I have alot of healing to do from the bilat...

Kathy - I feel for you and your husband as I went through something similar feeling like I had a lumpectomy and rads for NO reason because I ended up with a bilat and chemo.  The only thing you can tell yourself is that presented with whatever info you had, you made the right decision at the time... what else can you do?  I feel the same way.... whatever you decide now.. you can get through it....

Lisa - your video is priceless... I hope you win.. I really really do... I emailed Wendy and told her how great you are... and that you so deserve this... good luck!

BevR - I had the genetic testing because I have a strong family history... I don't know if you need it... but.. my feeling is in this whole thing that I will take any test available and if insurance is paying and it doesn't hurt too badly, sign me up... it's just more information with which to make decisions...

On the down side.. my niece's friend just died of Swine Flu (yeah, I know we're not supposed to call it that.. whatever)... my sister is freaking out and so worried because her daughter went to this boy's funeral (and was hugging all over the relatives) before the results came back that that is what killed him.  He was 19 and his sister is hanging onto life right now with the same flu.  My sister was supposed to come here this last weekend and was scared that she had it and would pass it to me .. so she didn't come.  WTH.  Yeah, that would be my luck... survive 2 bouts of bc, then get the swine flu... anyway, that whole thing is super scary to me... don't know what to think about that......

well, off to take a shower and get ready for my consultation re: ovarian removal... the fun continues....

Hi January Jewels,

I haven't posted in a long, long time (couple of months) but I have been reading everyone's comments and it helped me get thru my treatments and side effects.  I'm glad to see that most of you are finished with treatments.  I read our earlier posts about how we were all waiting to start chemo and how anxious we all were.  Now we're all finished with that leg of our journey and have come out stronger for it.

I finished my chemo treatments on June 26.  I receive chemo before surgery so now I'm scheduled to meet with my BS about my surgery which will be a lumpectomy.  The good news is that my tumor has shrunk drastically so I guess the chemo was all worth it.  As many of you mentioned, the side effects are slow to go away.  I still have some neuropathy although that seems to be improving.  I still have weakness in my legs, swollen feet and my taste buds are still kind of junk.  Those of you that had swelling in the feet, how long did that last?  I take a diuretic once in a while but the swelling comes back.   My onc said that the side effects may last up to a year so I guess i just need to be patient.

Hi BevR,

Thanks for the response.  I had 4 treatments of AC every 3 weeks followed by 12 weekly taxol.  The swelling started to appear after my last 2 Taxol treaments.  It would go away and then come back again.  This last time it started to swell a few days after my last treatment.  6 weeks?  I guess my 2 weeks isn't so long after all.  I'll just be patient then.  The swelling doesn't really bother me except that my feet look fat and ugly.  LOL.

BevR - my genetic test results came back last week: no mutations.  Insurance paid for it because I was 40 at diagnosis.  I agree with Diane it's another bit of information to help us make decisions.  It's nice not to be guessing about it and now I don't feel the need to have hysterectomy.

Congratulations Jess!!

Hawaii - I had a similar regimen as you but my AC were biweekly.  I finished about 7 weeks ago.  Goodness - remember that fun?  My left foot still causes quite a bit of pain daily and my fingers are swollen.  It's hard to bend them sometimes. 

Diane - I hope your neice is free and clear.  

Oy -can I say? My sister is a manic depressive and is having major episode, really just acting bizarrely and she has small kids.  It's just so hard because I need to not focus on her.  She's like a bottomless pit of neediness.  I'm leaving this one up her husband and my parents who seem to all be failing miserably.  I just can't go there right now.  She a 100 pound gorilla and I found a lump on the palm of my hand that I am praying is a wart.  It can be so hard to juggle everyone's needs through all of this can't it?               

Thanks kmmd.  Yes the bump is on my mind.  I'll give it a little time.  It certainly could be something gross but not scary which would be just fine with me.      

kt57 - Glad to hear that things are greatly improved for you.  Yup, I'm waiting for hair to grow back also.  I have some very fine, white, curly hair grow at the sides and peach fuzz on the top of my head.  Not a good look. 

Yearofthehat - Hope your foot and finger issues resolve themselves soon. AC side effects definitely were not fun.  I have to admit that Taxol was a lot easier but going every week for 12 weeks definitely took a toll on my energy level. 

kmmd - Thanks!  Yes, I'm very happy that I can do with a lumpectomy.  I hoping that after i take the ultrasound and mammogram that they will see that the tumor is even smaller.  My onc says that a lot of what we are feeling is scar tissue. 

CIL--Just saw your post from the previous page. Glad to hear you're doing well too and the Herceptin isn't bothering you. Great attitude about moving on. I feel lucky too that I was able to maintain a pretty good qualify of life during chemo, work part time, and get out and have fun with friends and family. I'm having a harder time clearing the worry clouds, but I'm hoping  they blow over with time. I'm trying to be positive, more calm about the small things, and mindful of how lucky I am to have my friends and family and so much beauty in my world. 

 I couldn't find the link to the pics of your new hair! It would be fun if all us Jewels could  share our new looks. I can't even figure out how to get a pic in the little box!!

Hey Jewels:  Lance Armstrong needs our help..... I dedicated my page to the January Jewels.

FROM Lance Armstrong:    

I returned to cycling this year for one reason: to fight for the 28 million people affected by cancer worldwide.

We are making tremendous progress in this fight, but there's still so much to be done. By next year cancer will be the #1 killer in the world and yet most of the world's leaders lack any real plan to fight back.

During my 20-day ride in the Tour I'm calling on leaders around the world to make major commitments to fight cancer worldwide - but I can't do it alone.

As a first step, will you join me and sign the World Cancer Declaration - a major global push to pressure the world's leaders to act now on cancer?

http://www.kintera.org/TR.asp?a=8dJFKVNyEeKHK0L&s=7fJELTPCIdIEJTPvHjF&m=eqIHLXNzEfL1F

As an added incentive, a donor has pledged to give $30,000 if we can collect 30,000 signatures before the end of the Tour.

I'll send these signatures to world leaders after the Tour de France and pressure them to make cancer a priority in their own countries. It's our best chance to push for better treatment, more funding for cancer research and access to care for everyone around the world.

Without your commitment, these leaders won't pay attention. Will you sign the declaration then ask your friends and family to do the same?

When you sign the declaration, you'll be able to dedicate that action to a cancer survivor or caregiver who has inspired you. I dedicated my signature to my mom, who stuck by me - and fought alongside me - throughout my cancer fight. Who will you dedicate yours to?

We'll be keeping you updated on our progress over the coming weeks - meanwhile, join me at LIVESTRONG Action and make your commitment now:


LIVESTRONG,

Lance and the LIVESTRONG Action team

Jess, go naked, I know you'll be beautiful

Year ... oh he got more than a wedgie... lol....

Kathy - I couldn't get the link to work... but I'm all for signing it... pm me the page?

BevR... insurance that doesn't cover a mammogram?  That sounds crazy! I will google it and see if I can find anything and PM you if I do ....  where is she (city, state?)

Options for the San Antonio area:

Alamo Breast Cancer Foundation

P.O. Box 780067 San Antonio, TX 78278 (210) 684-0587 or (210)692-9535 (helpline)

South Texas Mobile Access Project - Mobile Mammography

414 N. San Saba

San Antonio, TX 78207

(210) 704- 4100

Sorry to butt in, but I have been a reader of your thread since January (started chemo in late Feb) and you were all tremendous help back then. I live in San Antonio, and will help in any way I can! PM me if you want any other info.

Janine

Oh, that stinks! You end up stuck between a rock and a hard place that way! Maybe she can neogiate a discount for paying in full at time of service. We used to do that sometimes in the medical practice I used to work in (10% off if you pay at the visit). Good luck to her, I hope it's b9!

LANCE ARMSTRONG link.. try this one:

http://www.livestrongaction.org/campaigns/commit-fight-cancer?tr=y&auid=5069926

Janine, nice to have you join in.   We are quite the group .. the more the merrier.

Holbolt:   Tony Randall!!!   He could be one lonely man with that kind of comment.

Well I emailed a raft of questions to my onc for their case review -- me being the "case".   This is the bottom line.... being BRCA2 positive, and having had chemo and rads... they don;t really know my risk..  He said I got the right chemo and "more than enough of it".   There was not one onc in the meeting that would recommend Bilat Mastectomies right now ... I am chemoed and radiated, and estrogen blocked .. I am good for now.  He is more concerned with the cancer I already had, not the one I might not ever get.  He wants me to recover from treatment fully.

I do need to get my ovaries out within the next six months -- that and the Arimedex will decrease my risk of a new bc .   I will get mammography and MRI annually -- either staggered or at the same time ( some research is saying it's good to do them at the same time and look at them side by side).  He will leave the decision about Bilat mastectomy to me... however it is not recommended for 6-12 months after rads (and TE with implants is not an option on the radiated side).   So I'd be looking at tissue transfer of some sort if I opt for that.   So I figure the more oreos I eat in 12 months, the bigger boobs I might get????  Actually, I will do just the opposite -- eat well, exercise, get rid of some stress, stay positive and hopeful and be grateful for every day.

 I am so grateful for my oncology team.... my onc emailed me the very same day they conferred about me.   Before this, I called the NP at the breast cneter - the one who helped me through the diagnosis phase-- to ask about plastic surgeons and options for reconstruction... she talked to me for about an hour.  She is also going to present my case at the breast center review meeting-- some of the same people will be there.  Her questions are targeted at the best intervals for surveillance both me and my son (if he inherited the same mutation). 

I am relieved that I do not have to "do" anything now.   I am feeling great, but I still need some time to heal - physically and emotionally before I do anything more.      This is a strange time --- I am so tired of thinking about cancer and treatment -- I just want to stick on a shelf for a while.

Well.. enough rambling .. you'd think I was back on steroids!!

Hope you are all doing well. 

Phyllis... I will be thinking about you and sending good vibes tomorrow... I totally spaced which surgery you are having though... mastectomy, lumpectomy, bilat?  I tried to go back and figure it out but I can't find it... in any event... just find something loose and comfortable that opens in the front.  Do you have one of those camisoles that hold drains or will you not have drains?  It'll be over before you know it... I am a big sissy and I had a bilat so no worries... you are going to do great...!!!

Kathy - great news on no recommendations for further surgery right now and I like the way they said you had "more than enough" chemo... that was a good meeting!!!  I'm with you on the ovarian removal.. we'll get through that together.. that's on the menu for me too apparently....and apparently recon options are the same as mine.... anyway, you sound like you have great people in your corner (onc team)... !!!) 

Phyllis: I'll be thinking of you tomorrow and sending healing wishes your way!!! I had a left mx in November. I didn't buy any special wardrobe, but I did have a fleece jacket with big pockets and a robe with pockets. I put the drains in the pockets (I had 2 drains--don't know why? Maybe because they removed so many nodes).

Also, I tied them onto my pj bottoms with the drawstrings for night. I wore camis during the day (those Costco ones with the shelf) and tucked the drains into the shelf. I didn't have my drain for long--less than a week after my first surgery. I did have my husband help me drain them. It seems like a 2-person job. I just couldn't do it right by myself. I don't remember what I wore home, but I do remember using the small pillow the hospital gave me to shield me from the seatbelt.

Kathy and Phyllis--I''ve been considering removing the other breast, but here's an article that has given me comfort: http://www.medicinenet.com/script/main/art.asp?articlekey=96035

about the chance of a new primary in the other breast. I'm still considering it, but need to get my genetic test done first. Also, I've read that any type of chest/breast surgery can affect the lymph system, and I'm already having enough trouble in my left arm (not big swelling, but enough discomfort to irritate me---I wear a sleeve to work, while exercising, and flying).

 Saw the ENT today. I'm relieved he's pretty sure my hearing loss and tinnitus isn't due to a brain tumor!! Something about too much fluid in my cochleas. I didn't even realize I had a hearing loss before the audiogram, but the buzzing in my head sometimes makes me crazy. I'll see him again in 2 months. Gads...more appointments.

2 days of rads left!!!