Starting Chemo in December 2013

Leealice

I'm grade 3, triple negative and my KI67 was 95. The KI67 # shows how fast the cancer cells are reproducing. I've been worrying about having the red devil chemo for 6 times and possible heart problem side effects in the future. So glad the KI67 was brought up because I have forgotten about it and now I know I need to do all I can to fight this.

Love this group and all it's support and info.

Speaking of ports- Twice the nurses had trouble getting blood and were postioning me all sorts of ways to make getting  blood easier. The next chemo they said I had a blood clot and put some meds into the port and I had to wait 30 minutes and then they flushed it and it has worked well since.

keepthefaith

welcome southernbling!

Discussed Hormone Therapy with MO yesterday at my visit. We don't have a game plan yet. I am torn with what to take. She is thinking Armidex. Being post-menopausal, she said I could take Tamoxifen or Armidex. But, the SE's are different. I found out I have Osteoporosis, so the Armidex worries me since it can cause bone loss, but she said is probably more effective for the cancer risk, with my age, than Tamoxifen.  Will be taking Vit D and Calcium, regardless. I have gained weight and am really annoyed about that. She said it will be harder to get rid of with HT...wonderful news! And, I will get to go through menopause again...can't wait! whaa-whaa:)

I will be scheduling my port removal as soon as my BS gets back from vacation, hopefully the end of the month. I think it helps mentally to be getting something done and moving forward. Rads next...

Leealice, that's good to know about the port.

Have a great week ladies. I also, don't know what I would do without this site!

 

 

 

 

kimie06

welcome southern Bling - sorry you have join us under the circumstances but you have found a truly inspiring group of wonderful women...I am grade 3 too.

Robin - LMAO at the pic

damn steroids kept me up half the night.  I am just waiting for the clammy sweats to start.  yippee

Lisaj514

holli-hope you feel better. Are you planning on doing the icing for hands and feet when you start taxol on thurs? good luck. In San Antonio we are planning on doing the Riverwalk of course and looks like fiesta San Antonio will be going on that week. We would also like to get to a beach so Corpus Christi is the closest and padre island national seashore looks nice but is 2 1/2-3 hrs away. We love to eat at different restaurants and too bad my taste buds are off but everyone else can enjoy. We like hiking and outdoorsy activities but not sure how much I'll be up to. Just being away, in warmer weather, should be nice. Still lots of snow here in upstate ny

Do the taste buds stay bad through the taxol as well? 

DJJ

Lisaj514, I know some ladies have bad taste buds on Taxol, but I have been lucky.  I haven't lost taste or had to deal with any mouth sore issues on the weekly low dose Taxol.  Everyone is different though. 

kimie06

Lisaj514 I have been doing dose dense taxol once every 2 week 4 in total, I do loose my taste for a few days which stinks but it does return, been having neuropathy in the hands and feet, I did ice yesterday during my treatment and will for my next one which is my last, my oncologist also reduced to dose which I questioned but he said I have had a lot of medicine since December and it was more then ok..  I am a hairstylist kind of need them to feel normal.

RHGSR

Lisaj- the river walk is great.  My husband and I stayed a night on the river walk before I started chemo. It was great to get away before starting the next leg of this journey. Also the market square off of Commerce Street is fun too. There is a restaurant there called "Mi Tierra". Great place and atmosphere.  Plus they have a authentic panaderia ( Mexican bakery) in the restaurant.  It has some wonderful goodies.  

If you like history, there is a hotel across from the Alamo called the Menger Hotel. The bar in the hotel is a place where Teddy Rosevelt met with his Rough Riders. They also schedule ghost tours of San Antonio there too. 

The Alamo is a little cliche, but it is cool to see. Plus the Alamo plaza has lots of stuff to do. 

I wish I could think of out of the box things to do but chemo brain has me stumped. There are lots of great little day trips from San Antonio if you have the time.  Lots of quaint little towns - Boerne, Fredricksburg, Comfort, New Braunfels. 

If the bluebonnets are blooming be sure to get out of the city to see them. 

Yes... I am on doing the icing through the taxol. 

Taxol #1 is postponed until next week :0(. I have fluid on my ear and a low grade temp and sinus pressure and a massive headache. I'm bummed.  

chicopeach57

So these hard red spots that are showing up are actually an allergic reaction to the chemo.  Dermatologist said I should be able to keep on the Taxol if they don't get any worse but talk to MO.  They should go away when it is finished.  

I have done 4 out of 12 weekly Taxols, hope it doesn't get worse.  I have found my taste buds are coming back and I want to eat everything.   My MO said I should get a break before radiation, will be looking forward to that.

Lisaj514

holli(RHGSR)- thanks for the travel info! Love to get travel tips from locals. I'm looking forward to getting away. I'm hoping to feel well enough to travel and sight see and enjoy everything. Ill have my first taxol on Monday 3/10 so I might start before you. Hope you feel better

RobinLK

Chicopeach, my MO prescribed a steroid cream for my hard bumps. It has worked well at getting them to go away. They return each week, but not any worse.

oranje_mama

Ladies, you may fall out of your chairs, but my MO today said that she's ordering some mitts & booties for us TCH girls to ice our hands and feet during Taxotere.  I was in to see her about my suspected Hand & Foot Syndrome (HFS).  She confirmed that it was HFS, told me that she'd seen several patients this week with HFS and she suspected the batch of Taxotere (apparently it's plant based and there can be variations between batches?!!).  She said she thought it was worth a try to ice, so she's ordering the mitts.  She says it doesn't need to be "frostbite cold" just need to keep very cool.  Luckily my HFS is Grade 1 (apparently they grade this thing too, LOL) and she will see me again next week to decide whether to lower the T dose by 25%.

I lived in Austin for 5 years and am enjoying all the San Antone & Hill Country talk .  My parents lived in Corpus Christi for about a decade.  In my opinion, skip Corpus/Padre and instead, hang out in the Hill Country (little towns that Holli mentioned).  What I wouldn't give to be there now.  Love spring there.  And the food.  Don't get me started.  Mmmmm, Mexican.  So many good restaurants in Austin.  Also, a fun place is the Salt Lick, outside of Austin.  BBQ & BYOB.  We were married in Austin, and day after our wedding rented a bus and took a big crew (mostly out-of-towners) out to Enchanted Rock (a cool rock formation/hike) past LBJ's home/ranch, to Fredericksburg (a very cute German-speaking town), and finished up with BBQ at the Salt Lick.  We've been married 13 years, and people still bring up the Salt Lick. 

RHGSR

Oranje mamma - yes!! The Salt Lick is awesome. They have one in round rock now but the atmosphere isn't the same as the one in Driftwood (probably the one you are talking about). On weekends the wait can be pretty long but they provide live music while you wait. 

What a fun wedding!! When is your anniversary? We have been married 13 years (14 in December). 

There are a lot of vineyards in these little towns too. If wine is your thing you can find wine tours where they take you to the wineries for tastings. 

jackieak

blood draw day again, Taxol #4 tomorrow...I hope, have had a head cold all week, but no fever so I think the counts should still be ok.  Gosh these weeks fly by...which is good and bad, cause I feel like I'm always at the poison place!  We are gaining so much sun light every day, and it brings my spirits up to see it brighter each day...ready for spring and chemo to end!  I'm bummed my lashes are falling out now, and quickly, one brow is ahead of the other, I'm tempted to pluck the one with more hair so they match....but afraid they may all come tumbling down instead.  Onward bound, my best to all!

oranje_mama

Holli, yup, I'm talking about the Drifttwood location, I always thought the wait with live music was half the fun .  We have a December anniversary too - 12/29/2000. It's a small world!

J4DC

jodi, yes, my AC is every two weeks. The bright side of every three weeks for you is that you may have more better days in between and recover if needed. 2nd week post AC, I was feeling about 80_90% back to normal, which I enjoyed. I think slower iv drips and home medication really helped me and the SE was easier than I thought. You can do it!!

Welcome southernbling, sorry you have to be here, but it's a great place to get support. I don't know my ki67 #. I agree with DJj, ignorance is bliss. 

Mikesgirl17

Oranje, It's about time doctors started trying to avoid se instead of treating them after the fact.  Especially when it as easy as using ice.  Very glad to here that.  When I was icing my hands within the first half hour of getting Taxol, I took my hands out of my wraps and my friend and I were amazed at what they looked like.  My palm and and fingers were red except for all my finger tips.  They were whitish yellow.  It showed where the Taxol was going.  I was gripping the soft ice pack so my finger tips were embedded in it almost like a claw.  The cold was stopping it from going all the way to my tips.  It really bugs me that doctors and nurses aren't taking icing more seriously.  I feel I have to keep defending why I'm doing it.  The proof is in the pudding.  I don't have neuropathy.  Have a good day ladies.

Lisaj514

oranje mama-nice about the doc trying ways to PREVENT SE instead of waiting and then treating with more meds. Will def try the icing. There was a clinical trial done for this in 2010-2013 although I can't find results you can find it on clinicaltrials.gov and search  "cryotherapy in preventing peripheral neuropathy and nail toxicity in patients with breast cancer who are receiving paclitaxel". This might help in justifying it for the docs. 

Oranje mama and RHGSR,  thanks for more Texas travel info. I'm keeping all these tips in my "notes" to refer to when we are there. These sound great! Salt lick, Enchanted Rock,Fredricksburg etc. Wish I didn't have this damn chemo hanging over my head like a cloud

It was sunny here today and warm...or warmer...in the 20's. I went outside, bundled up my bare head and took a 1 mile walk! That's more than I've done in a while! Will try to do everyday

oranje_mama

Whoa, am I tired today.  I went swimming for the first time in 2 weeks (didn't manage to go last week due to SEs).  I swam half the distance I normally do, and my arms and legs were like lead.  I couldn't even do flip turns.  I'm on Day 14 of TCH #4.  A little worried about what will happen with #5 & #6.  I was lucky until now to avoid the extreme fatigue.

I had CBC today, and Hemoglobin was back up.  So I don't think this is due to anemia.

RobinLK

Had #6 of 12 today for Taxol. Discussed the neuropathy with MO. It is in my hands feet as of 3 days ago, legs as of this morning. I have had a lot of swelling also. I am now tracking when I have it, as it comes and goes throughout the day.  Depending on time tracked each day, may be stopping Taxol per MO. I am fine with that as I still have a buttload of other treatments to get through.

keepthefaith

Feeling better today! Have my RO appt scheduled for next Friday for planning rads....One more step.

Lisa, if you have time and are in the area, you might want to check Gruene out also. There is a Sunday gospel brunch at Gruene Hall on March 9th. 830-629.5077. Not sure when you are going or if you are interested, but Gruene and Fredricksburg are both having Market Days the week-end of March 15th also. Needless to say, I'm sure you will find something fun to do while in Texas!

((HUGS))

 

Crazywabbit

robin- sorry you are having such a rough time with your chemo. Have you tried any of the supplement like B6 and glutamine?  

Keep the faith- yes one step at a time. Good to move onto the next step of treatment. 

Oranje-mama- great you are trying to get back into swimming. I have tried to walk 1-1.5 miles weather permitting, which unfortunately this winter has been rare.  Next few day will be above freezing so I hope to get it each afternoon.  Walking much slower then I used to but it really feels good to get out in the fresh air. 

Hollie glad the icing is working for you. I had taxol #4 today and the numbness in my left foot is about the same, seems to come and go but not worse.  I was able to get the decadronr deduced to 8 mg today. And if I do good hope to get it down to 4 mg.

Lisa have a great trip to TX. I am dreaming of sun and warm temps. 

Jackieak. Hope yo got your taxol today with no problems today. 

DJJ- my taste seems to be coming back also.  I could taste coco roasted almonds the other day.  Mouth is still dry but not as bad as when I was on the AC. 

Wishing well for everyone having chemo this week 

Barbara

RobinLK

I am not taking any supplements other than my vitamin d3 and calcium. MO does not like how strong this came on after not having any neuropathy.  He said at this point, if it gets any worse, (most of the day vs. on and off) the risks outweigh any benefits. I was cancer-free after my surgery. The chemo is for any stray floaters that may have been to small to see on my scans. I still have radiation, tamoxifen and Herceptin to do. We chose an aggressive treatment due to the pleomorphic, grade 3, HER2 positive components. 

keepthefaith

Robin, I hope your neuropathy does not get worse. I'm glad your MO is on top of it!

What brand of supplements do you take? I found out I have osteoporisis and osteopenia. My MO recommends calcium and Vit D. My problem is, when I checked out the ingredients, the only ones I can find list "soy" as an ingredient...I think that produces estrogen or has something to do with it. I'm wondering if anyone knows of any w/o soy or if that's a big deal since I will be taking HT anyway...of course, I won't be on HT the rest of my life, so would prefer something w/o soy.

 

RobinLK

Neither of mine contain soy. I just checked...lol. They are both from GNC. It was the only place I found that carried the vitamin D3 5000 in liquid form. The other forms make me nauseous. 

Crazywabbit

keepthefaith - I took fosamax  for 3 years  about 10 years ago,  I found my vitaminD level was very low, 11, when I broke my ankle 5 years ago and it took a prolonged time to heal. I am taking 50,000 units of vit d twice a month and one Citracal D daily to keep my vIt D levels > 50. My last DEXA , 3 years ago had improved significantly. I will be requesting another DEXA this summer and will consider active treatment if my bone  density has dropped.  There are so many agents out there for osteoporosis now and several of them may also help lower the risk of bony mets with breast cancer. 

Even though the AIs may cause more bone loss then tamoxifen I want to take them. Tamoxifen may not be as effective against the lobular cancer as it is the ductal. Also I had a scare last year with uterine bleeding. I was afraid I had uterine cancer but they found benign polyps thankfully.  Don't want to take the increase uterine cancer risk with tamoxifen after going through that. 

Barbara 

RHGSR

Barbara- where did you find the info on Tamoxifen? That is the plan for me. I'm trying not to google too much.  But if there is a specific study that I can bring up with my MO I'd be interested. Thank you. 

Holli

chicopeach57

I asked my MO about soy and he said it isn't a problem with estrogen, "that is '80's thinking" we're his words. 

Getting ready for taxol #5 tomorrow, this last week wasn't bad for me. Hope it stays getting better. Did get the top of my head a little sunburned doing yard work, trying to get it less white.

jackieak

oh the joy of napping after chemo for 2 hours due to Benedryl and having that fog from it, then being awake all night with steroids and the night sweats....almost 2 am here , I'm sure it's morning for most of you....even took an Ativan, no help, steroids win this time.

Is anyone taking the biotene vitamin for hair and nails now?  I plan to after chemo, but wonder if ok to start now, my multivitamin daily has some in it but not much.  Sorry for the spelling I'm tired and lazy..

DJJ

Good morning ladies, I have Taxol 6 today.  Neuropathy didn't get any worse this week it actually seemed to get a little better.  My acupunturist gave me a Complete B Vitamin to take twice a day and I swear I notice a difference not as much numbness in my fingers.  Maybe it's in my head but whatever it takes The Gabapentin has also worked to get rid of the tingling in my fingers and toes and the pins and needles in my feet. 

Robin, I'm sorry your having problems with Neuropathy.  It's a bunch of crap!!!!! So done with all this.  42 more days until last chemo! 

Wishing minimal side effects for all of us! 

keepthefaith

Thanks Robin, Barbara, chicopeach!

I have had a hysterectomy, so the uterine risk is not a factor for me. This can be so confusing sometimes!My MO said she will do another Bone Density scan in a yr or two if I take Armidex. What is a DEXA?

DJJ, glad your neuropathy is getting better! What a relief for you.

Enjoy your week-end ladies.