Calling all TNs

cmksocal

Hi,

I haven't posted in many months.  But today I found out that I am still dancing with NED.  I did chemo/lumpectomy/radiation from July - Dec 2010.

Colleen

mccrimmon324

cmkocal - congrats! 

Barbarajo50 - Love the Mt Hope winery, we're originally from Philadelphia and every year a group of us used to go the the Renaissance Fair and stop in the winery and stock up for a year.  Something we all looked forward to every year.

TifJ

My sympathy goes out to Tysmom's family. FUBC!

MBJ- I am in month 9 of a frozen shoulder. PT has helped tremendously and am beginning to feel "normal" again, but still have some pain. I hope you get rid of it much quicker!! How's Kentucky?

Suze35

cmkocal - that is wonderful news, yay! Time for a little celebrating . I'm a big believer in this, take your joy with each passing milestone.



kathrynn - if you are lurking, I am doing my chemo with Michael today, and I passed along your well wishes. He was thrilled to "hear" from you and hopes you are doing well .



~~~~~~



Got my CT results today, and my instincts were right, I did have some progression. It was enough to increase my symptoms a bit, but not SO much that my MO wants me off the study. She feels the opportunity to try the experimental drug is very important, and going another month should not compromise my health overall, as the progression wasn't "major". I am willing to give it the month, and then we will scan. If still no results, she wants me to move to Halaven. I'd be skipping over some other choices, but she really likes what she sees with this drug, and feels using it earlier would be good. And we can always go back to the others.



Anyway, I am fine with all of this. Any progression sucks, but it could have been worse, and it got me the Tig. So onwards and upwards!

lwarstler

Babs...OMG...so funny!!! Thanks to my new leaky bladder I had to stop 3 times to go dry myself...but worth it for the laughs!

Survivor and Inmate: all I can say is ((((BIG HUGS!!!))))

Olive: Please vent away...so sorry you have this on your plate for the holidays. ((Hugs to you))

Suze: Sorry about your news, progression definitely sucks but glad it was a minor progression (if it had to be any progression) and that there's a good plan in place that you feel good about. I am always amazed at your great attitude and it is a huge ....um chemobrain attack......inspiration for me to not let myself get down on my chemo sick days.

GrandmaBubba: So sorry to hear about Tysmom, my thoughts and prayers are with the entire family and all the people who have been touched by her life.

Lovelyface

Suze, sorry to hear about the small progression, however, I totally know with a bright head like yours, you will be making the best decisions for yourself.  Seems like your MO is following you up very closely, which is really great.  I hope you have a good chemo day today, I will be thinking about you.  If you feel great later, take some moments to enjoy something which you love.  I hope you do.

LRM216

Suze:

Wasn't halaven the drug that turned it all around for LJ?  While I am so sorry to hear of even the small amount of progression, I am so glad that this is not being seen as a tremendous set back.  I just know that you will do this - your turn too will come where you get the "all clear" as well.  I just want it sooner than later for you!  Be well dear Suze, and keep the faith, you will prevail, not the beast.

Gentle hugs,

Linda

kathyrnn

First, does HAPPY DANCE for LJ! Your news put the biggest smile on my face!



Suze, yes I've been "lurking". Was running like a banshee trying to get things done before surgery. Glad to hear the progression was small and that there's a plan in place.



To all the new recent members, this is a great source of info and support. Welcome.



Condolences to Tysmoms family and friends.



Inmate and Survivortobe, I'm so sorry for what you're going thru. I'm only on my first round with the beast, so I'm always awed by those on here who fight with such

grace and courage. Inmate, being a bit of a prankster, whenever the tell me I'm gonna "feel a little prick" I tell them "no problem, I'm used to it, I was married to him!"



Lovelyface, thanks for the tip on windows movie

maker



Had my lumpectomy (2 humors) and SNB yesterday. Good I never lie to my docs, lol. BS, came out to update my friend with a smirk on her face. Told her I woke up smiling and immediately asked when I could have a cigarette. (luckily I don't remember this!). Out of surgery at 11:00, out the door by 12:00 and at the restaurant having lunch by 1:00. Up today with almost no pain, don't even need a Tylenol! Doesn't get much better than this, I'm a lucky shit! Of, and I forgot, I did my celebration before surgery on Sunday. Went to the NY School of Trapeze and flew thru the air! I do feel a little bad about the trauma I caused the little kids in line in front of me. You has to see the look on their faces when they turned around and saw the bald old lady standing behind them! I thought of you immediately, Painting, future patients for you?

MBJ

Tifj:  Loving Kentucky though it is really cold out right now and the temp is supposed to dramatically drop tomorrow and we still don't have our belongings!  I am trying to work the kinks out of my arm because my insurance just never got on board with PT and this is why i have the issue in the first place, so I am on my own with it.

bak94

Still exhausted almost 2 weeks pfc. Especially after yesterday. It was one of my last 8 hr days scheduled at work before my BMX. The Saturday before I got a call saying one of my favorite clients who I have been doing her hair for 20 years passed away and her funeral was on Tuesday, my 8 hr work day. I rearranged my day so I could go after my first client. Had a hard time with fatigue with my first client but thought I would get some rest at the funeral. Oh no, no rest for me! It was a Catholioc funeral! And a beautiful one I might add, but all the standing, sitting, standing wore me out! I thought about staying seated, but there were people in their 80's and 90's getting up and down, so I did not feel comfortable slacking off like that! We rushed back to work and my next client was there, did ok until I had to shampoo her hair, thought I was going to pass out. A friend came over and finished up for me. I brought my next client back, got all ready, mixed color and went to do her hair and felt really exhausted again. Looked on the mirror and I was as red as a tomatoe! A co worker took one look at me and said, go lay down, I will foil your client. I had to have my husband pick me up, he works just down the street and was just getting off work.

What is wrong with me? Shouldn't I be better than this? I guess this is why ssdi approved me. I want to feel stronger before my bmx on Nov. 30. My blood counts have been good, scans 6 weeks ago good, going in for more scans next tuesday. Just scared that something is wrong besides chemo exhaustion. Anybody else this tired after chemo? I did do 6 ac and 12 abraxane and avastin, maybe it will just take more time. Oh, I have less hair than I did 6 weeks ago!

Sorry for the book, I amjust frustrated.

bak94

So sad to hear about tysmom. hope her family is doing ok.

Suze-I'm glad you get to try the new drug, I hope it wipes out fc. Sorry about the progression though, but thank goodness they are keeping a close eye on you and being thorough.

Kathrynn, you did what?!!! Must have been a blast!

Thinking of everyone, hope everyone is doing well.

gillyone

bak94 - you need to rest to give your body a chance to recover before surgery. You have been through a LOT with chemo - so don't feel bad about needing to rest.

Survivor2Be

What do u guys take for steroid pain? I feel bloated, constripated and achy. Heartburn controlled with prevecid right now

jazz3000

Hi Survivor- Constipation can sure make you feel achy and bloated. Sad to hear your going through all the upsets with the body right now. Are you taking the Colace? over the counter.med.

Don't laugh but I find I don't feel real hungry and eating bran has never been a favorite but a friend suggested I do what I used to in Kindegarten. Remember the graham crackers? I can manage two wafers a day and with fluids - juices and water find I do much better. They say to keep track of daily movements to make sure you don't wind up in trouble with the bowel. A laxative might be necessary if it's been quite a while. My BS says 400 mg of Magneseum, again over the counter, works wonders. I have to laugh to myself when I think of what I've learned with BC in just the past two months. The bowel seems to be a major point of order. LOL Here's hoping you feel better soon or as my friends are so quick to share: Hope everything comes out all right.

  

mags20487

survivor --my onc suggested prune juice with milk of magnesia added--she said it would "fix me right up"

Maggie

christina1961

Suze, I am sorry to hear you had progression. It does sound like they are watching you carefully. Hopefully the tig will work.  I am still doing well with the eribulin - Halaven - just a few achey days and then pretty much back to normal although I've only had two infusions.  I haven't had any heartburn from it which is great because with the TAC I was taking maximum prevacid and still had heartburn.

Survivor2Be, My cure for constipation is eating berries. I never took anything for it all through TAC nor have I during this last chemo. My doc said to wash them with soapy water before eating when immunocompromised, though.  I ate raspberries, blackberries, blueberries every day - huge bowls of them and it seemed to really work.

Bak, I think you are feeling as "normal" as you can right now - you had AC which is ROUGH and then abraxane which I've heard is also rough.  The taxotere I had was really rough on me with extremely weak quadricep muscles following it and muscle spasms. Just give yourself more time - it is hard. 

Positive news about vaccine that was posted over in the clinical trials section:

http://yourlife.usatoday.com/health/medical/cancer/story/2011-11-08/Vaccine-to-treat-breast-ovarian-cancers-shows-promise/51125702/1

Suze35

Thank you all for the support - I appreciate it.  I do my best to plan for whatever comes, but there is always that little part of my mind that really wants that good news.  I'll get it one of these days!

On a positive note - the purpose of the study is to ultimately determine if the Tigatuzumab can work on its own - so there is hope that it will still work for me.  I'm visualizing like crazy these days!

Linda - yes, LJ is on Halaven, so it could definitely be a great drug for me.  It is usually brought in later because it has shown to be effective after multiple chemo failures, but my MO thinks it could be even more effective when used earlier.  Her goal, I'm sure, is to get me regression/NED with the big guns, so that when/if I have to move on, I have less disease to battle.  Thank you for your kind and gentle thoughts.

Kathrynn - you CRACK me up!!  You sound like you have so much fun, how awesome - trapeze!!

Survivor - oh, dreaded steroids, I hate them.  I am so bloated and uncomfortable, it just sucks.  For the constipation, I take Senna (2 pills) every night, and STILL have to add in Ex-Lax every three days or so.  I also try and eat a lot of oatmeal, berries, grapes... It sucks though.  I'm don't know what to do about the bloating - I'm always hungry, but have no taste buds (thanks Abraxane!), and it seems like after my first meal of the day, I'm already bloated.  I am going to really make an effort to cut the crap carbs and see if that helps.  Hope you are feeling okay... you start your treatments tomorrow, right?  Thinking of you.

bak - I can really empathize with the fatigue.  I remember going to NYC 2 weeks PFC, and walking around the Guggenheim thinking something must be wrong - I couldn't even go 20 feet without resting.  I was still in pretty bad shape when I had my surgery at 3 weeks PFC.  In fact, I was pretty tachycardic even a month after surgery.  Go easy on yourself - it will take some time.  Try and do a little extra exercising - maybe a gentle walk for 10 minutes each day - but know that it will get better.  Each day you'll notice a little more stamina.

christina - I'm glad to hear the Eribulin hasn't been too bad for you!  I told my MO about the study you were on, she was asking where it was located.  She was impressed - thought it was a smart idea to try it - as she really likes the promise of this drug.

MBJ - I'm so glad to hear LJ's healer was able to help you get some relief for your shoulder!  That must be awful - you too TiffJ!  I hope you guys get your stuff soon, the cold must be a bit of a shock for you .

~~~~

I had a TERRIBLE night yesterday with back pain - I was *thisclose* to heading to the ER, which I NEVER do.  I have been spending so much time sitting, and not taking my pain meds as well as I should have, and boy did it flare!  I spoke with my doctor who told me to take a double dose of morphine, and if that didn't help, get to the ER - thankfully, it did.  I'm still a little sore this AM, but much better.

I am going to think that since I got my infusion yesterday, it is attack of the killer TIG, hitting that cancer immediately!!  LOL.  Gotta have dreams, right??

Hoping for a better day for me - and a great day for everyone else!

mccrimmon324

Suze, You are such an inspiration.  I praying that the TIG is working and you will be NED!! 

Babs37

Suze- Go Tig Go!!!!! Cheering with you for the Tig to do the trick.  

BarbaraJo50

mccrimmon,

You know exactly where I am! Just across the cornfield from the Ren Faire. I often went there summers when it was just the winery...almost thirty years ago. My son will turn 30 December 1st; and he was quite little. Anyway, friends and I would go there, buy a couple bottles of wine and let the kids run in the grass under the big trees. We would take a picnic and stay all day. It is a lovely memory of mine!

Peace.

TifJ

Suze- I like the thought of the pain being the "killer tig"!! How about if we all chant GO TIG GO TIG! Surely with all of us chanting the tig will hear and kick ass!! Wish you felt better. Thinking of you!

BarbaraJo50

Suze: I think of you often and will visualize that new drug working for you. (we both had huge lumps so I felt "sister like" with you as soon as I read that.)

kathyrnn: LOVE that you went "flying"!!! It is making me smile.

survivor: Sweet potatoes will keep things moving!

MBJ: I hope your things arrive soon!

bak: REST, REST, REST

BarbaraJo50

GO TIG, GO TIG, GO TIG!

Luah

Go TIG GO, GO TIG GO, GO TIG GO! In unison now...

Suze: surely your FC is hearing this and beating a path to the exit. 

Teka

Suze35,

I wish you a pain free night )

Paintingmywaythru

Suze 35 GO TIG!, and stop causung Susan pain!

KAthyrnn....what a cool story...yes maybe those little ones will be headed to the therapists door but more than anything I think they may have wondered what you did to your hair.

Survivor...so sorry you are so uncomfortable, hope everyones suggestions work...

bak94...I think what is happening is totally normal fatigue and you are just going to have to give in and rest more. Small bits of exercise will also help but be kind to yourself....you need to be your best friend.

Well...we have a deal on our house so on to the attorneys and a P and S.....not looking forward to packing though...

Titan

Suze..I hate the thought of you being in any sort of pain at all..but if the pain is killing those f**..g cancer well..ok..but still..do you have to hurt?  I hurt because you hurt..we all do..

Have a good weekend everyone..I'm starting early.I'm off tomorrow with my DH...

Anonymous

Up to my eyeballs in horse hair... always clip/trim for winter activities to keep their coat sweat-free and cleaner.

Looks like my younger son's Acura may have been stolen. We are all waiting for the latest from the police. This will be the second Acura our son's have lost. Older son's was totaled in a snow storm (he was OK, thank God).

Here's a chuckle for today:

Aussie stockman and his wife had just got married and found a quiet hotel for their wedding night. The man approached the front desk and asked for a room.

He said, 'We're on our honeymoon and we need a nice room, with a good strong bed."

The clerk winked, 'You want the 'Bridal'?'

The drover reflected on this for a moment and then replied,
"Nah, I reckon not. I'll just hold onto her ears until she gets used to it."

riley702

Had a bad day. Got 4 brand new tires yesterday, but when I came out this morning to go for my 3 month onc. appt, one of them was flat as a pancake. Argh! I called the main switchboard at the Heme/Onc. office (the only number they hand out); asked to speak to a nurse and got a recording. Left a message saying I'd be there as soon as I could. AAA took 45 minutes to come out and change to the spare. I called the office again as I took off to let them know I was on my way and got the recording again. You know where I'm going with this - I got chastised for being late and no, no one had bothered to pass along either of my messages.

My total cholesterol is 189, but my good cholesterol is only 40 instead of >45 and my triglycerides are 223 despite diet changes and being on both Zocor and Niaspan. Naturally, he accuses me of not taking the pills and/or eating poorly and obviously doesn't believe me when I deny both accusations. He can be a real ass.

My estradiol level came back <19, so I'm definitely in menopause. He'll change me from Tamoxifen to Aromasin. I said when will the effing hot flashes stop and the jackhole laughed and said it might take a while. Obviously nothing he's concerned with. Then he asked me if I was taking the Tamoxifen. Umm, yeah, despite my doubts it's doing anything but making me feel 80 instead of 50.

Then he says my liver labs came back a "little" elevated and it was probably the Zocor/Niaspan/my poor diet (grr), but he wanted a liver US next Tuesday, and then I can visit with his lovely self next Thursday for the results. When they hand me the lab req to take with me to the appt., written across the top is "r/o mets" !!! The hell? Is this something they always put on reqs to get the insurance to pay, or does he really think I might have liver mets? I didn't bother to go back and ask him because I knew he would just mumble something noncommital.

I went home and cried and now I have a headache. Tomorrow, I'll go get the effing flat tire fixed. Thanks for letting me vent.

mitymuffin

Suze, YES, GO TIG GO! I'm sending healing thoughts your way.

And wishing health and strength to all, Bak94, Survivor, Christina and all of you lovely, fine women.

Heidi, do you find the hair works into your bra when you clip?  After having to throw away several bras, I've just stopped wearing them when I clip. I think they should have a warning label on the clippers, like "Warning, remove underwear before clipping."