Calling all TNs

mtnbiker

Thanks ladies  for the info.

I am currently on  Avastin,carbo Abaxene, ...in a study..Anybody else on this treatment.. every monday for 12 weeks. one week 2 meds, next week 3.  only 5 total dose's of avastin... 5th dose tomorrow:)

happy new year to all...

inmate4232010

Mccrimmon.....I have two more left.  This Thursday and then next.  This will be my third time "finishing" treatment.  I hope this one sticks!  Third times a charm!

Kymn....Welcome back!  I hope all went well with your treatment and you are feeling well. Congrats on your canniversary!

khs113.....I was set up to scan every 3 months for the first two years.  Now I think they will have me on a monthly basis for the next few months to monitor the effectiveness of my last chemo.  I also molest myself every morning.  If I find even the slightest, anything, I call my onc and he has always been receptive to a look see.  I just love my medical team!

Bak94.....shoot I was just at Swedish today for a shot.  How long will you be in?  Can I do anything for you?  I mean anything, just say the word.  Please call me any time.  Sending you healing energy!   

gillyone

I suggest NOT posting personal info like phone numbers here - anyone and I mean ANYONE can read our posts. Use PMs for this stuff is my advice.

inmate4232010

thanks gillyone......good point!  I am very much a positive person and often forget that there are people out there that would troll a site looking for someone like me who foolishly posts personal info without thinking.

bak94

Thanks inmate! I am good right now. My port was infected. Did I already post about that here? It popped like a bad zit and was really disgusting. I am hoping I will heal now and be able to go home soon. I never have stayed in a hospital this long, and I don't even feel bad! Kinda bummed I don't have a port anymore, as now I have lymphnodes out on both sides. Done with chemo for now, but still get zometa and blood draws.

inmate4232010

Bak 94......sorry to hear you lost your port.  How the heck did it get infected?  Can they put in another one after you heal?   

I can drop by magazines, coloring books or sneak in your favorite food.  I will be back a Swedish on Wednesday and Thursday but can come anytime as I live fairly close.  

I hope you heal quickly and get to go home soon! 

TifJ

Bak- I lost my port too due to infection- 5 days after last chemo. Did they leave the removal incision open to be packed everyday? Mine took 7 weeks to heal and I carried my arm by my side because it hurt to move and I ended up with a frozen shoulder- so.... keep that arm moving!! Hope you heal quickly!!

Patti3

Hi all..just found this thread and thought Id share my story as well..I am a TEN YEAR TN survivor..dx at 42, stage 2B grade 3, 1/33 (too many lymph nodes removed) ..and one was positive. Had a mast and chemo..a month after chemo ended I woke up with swollen eyes-this continued and got worse..long story short my port had collapsed (superior vena cava syndrome) and the blood that was pumped up to my head could not drain out. After two days I finally was sent to the er, yes I drove myself! waited 5hours in the Er to find that I was very lucky to be alive as a stroke is very likely with this problem! surgery...and a two week hospital stay! ended up with a staph infection and myrsa! I was one sick lady..couldnt walk for months..it was a difficult time. It was a year later that i decided to have my recon..and I was happy that I did! Hysterectomy a year later, and the following year my gallbladder removed. I was put on tamoxifen and then aromisin because my doctor (in error) thought that because my status read 5% er+ that I should go for the meds..WRONG! Ive since learned that 5%is considered a lab error, and that I should not have been given those meds..anyway 4 1/2 years on the AI and I quit! i was in so much pain..joints and muscles made me feel like I was 100! I somehow continued my exercise program..draggin butt to the gym everyday, and Im glad I did! I now enjoy my workouts 6 days a week and do everything from boot camp to spin! My body feels better although there are times when I have flareups of pain..some neuropathy in the feet causes my feet to burn, and i constantly have a current like feeling in my legs and now arms- insomnia is my middle name! I continue to see my Onc every 4 months..he really doesnt know what to do with me..runs some blood and tests only when I complain of something excessively. So far-alls been good! Ive seen so many milestones with my kids that I thought I might not..My daughter just got engaged, and on now to planning a wedding!!!! Ten years have gone ..sometimes it seems like yesterday, and sometimes a life time ago! I do what I can do to ward off a recurrance..I eat healthy, exercise, laugh often..belly laughs feel great!, i love yoga and kayaking! i take vitamins, i try not to take any meds..but most of all i love being with my family and friends! 

wishing you all peace, love and happiness in the new year!! keep the hope!!!!!!!!

Patti

christina1961

Thanks so much for posting, Patti!  I really needed to hear that!! You really went through some rough times and came out the other side!  Happy New Year!!

bak94

Wow, how scarey! My mo wants to put me on tomaxifen with er 3%.

bak94

Tif, they loosely stitched it up so it could still drain. 7 weeks?! How long were you in the hospital?

TifJ

Bak- I was never in the hospital. As soon as I noticed the redness, my onc had me come into the center everyday (the weekends I went to the hospital) for 14 days for IV Rosephyn and vacomycin-probably spelled those wrong. It really sucked. I almost think being in the hospital would have been better as I live 45 minutes from both the cancer center and the hospital my onc is affiliated with. My removal incision was left open to discourage staph build up. I had to pack it every other day with this stuff called Silvercell. So it basically healed from the inside out. It was a huge pain in the butt and I have a pretty good size scar. What are they giving you for the staph?

mccrimmon324

Tiff, I had a problem with my lumpectomy, it opened up completely and got infected.  I spent a week getting the IV antibiotics then the weeks between my 5th and final chemo I had an unexplained fever and had to do the Rosephyn and Vacomycin everyday.  I was a terrible experience. 

TifJ

Mccrimmon- sorry you had to go through that! I told my husband that dealing with the infection and the IV antibiotics was worse than chemo ever was. At least I dealt with it after chemo, not during like you did. I will be very happy if I never have to have either antibiotic again!!

mccrimmon324

Tif - I had a breakdown in the middle of the IV Anti-biotics, which led to a little breakdown from my hubby too.  I got so scared that all of this crap they were pumping in me was going to kill my kidneys, one thing led to another and the two of us ended up sobbing on our kitchen floor cuddled up with our dogs.  It was just terrible, but we do laugh at ourselves now. 

I was luckier than you that my cancer center was only 15-20 min away though.  I can't imagine!  They loaded me up with benedryl too so I would never had been able to drive that far.  I went in the mornings and hung around afterward until it wore off and I could drive. 

TifJ

Thankfully, benadryl doesn't make me sleepy. I was able to take it before I left the house and that way didn't have to get the shot of it at the center or hospital.

This was the second time I had to do antibiotics. 10 days after my first chemo I developed a fever and had to go 5 days in row for Levaquin. At least then I had the port and didn't have to endure being stuck a million times. I have very small veins and can only use the left arm. It usually takes at least 2 pokes just to get blood!

Hey, if you're going to have a breakdown- have a big one!! I don't think I ever had a true breakdown, but I cried all the time. I am finally statring to feel "normal".

mccrimmon324

I did have my port and I'm very thankful for that.  My fever delayed my last chemo about 4 days.  I was pretty upset.  I'm soooooo glad I don't get poked as frequently as before I've had enough of that! 

I cried all the time before chemo started.  Then the day of my first treatment I woke up and felt like everything was going to be ok, I didn't cry again until our little breakdown.  Haven't really cried since but I'm still fresh out of treatment.  Next week is my first followup treatment and I think about it all the time, I don't obsess over it, it just pops in my head.  I guess I just need more time.  Physically, I'm pretty much back to normal except for the aches and pains. 

ksmatthews

Patti thanks for sharing.  And I hope you and all of us have many, many more years!

Anonymous

I remember my hubby and I sobbing on the kitchen floor with our pups too. It was the Christmas following my diagnosis, and we both wondered if I was going to be around for the next.

mccrimmon324

Heidi, There's something so special about the unconditional love you get from your pets  

TifJ

Our beloved Golden Retriever passed away 2 months before I was diagnosed. I miss him. I have had 4 follow up appts since chemo. I wasn't even concerned when I went on Dec. 30th. I felt good and had no complaints!

I wanted to just hold my kids and cry, but didn't want to scare them. They are 9 and 6.

tisthyme

Just wanted to let y'all know that there is a facebook group that is CLOSED to the public and is for us TN ladies.  It is called Breast Cancer Sisters.  This forum is great, but for those that don't want everyone to see their business and want a place to connect to other TNers, that place is pretty cool. I highly recommend it for us TN FBers.  I want us to all connect and share information, concerns, etc.  I wish all of you a Happy and Healthy 2012!  

riley702

Yikes, Rocephin is rough stuff. I had to take it after I was exposed at work to a patient with something nasty. Nobody bothered to warn me it turns your pee neon orange! It made my stomach hurt every time I took a pill, too. I've never had Vancomycin. I just finished 2 weeks of Levaquin for a kidney infection, and didn't have any problems with it.

TifJ

Riley- I only had Rocephin by IV and it doesn't turn your pee orange- I would have freaked out!! While I was taking the Levaquin I saw one of those TV ads that said "if you have taken Levaquin and suffered a tendon rupture...". I thought, crap not only do I feel like sh*t from chemo, but i have to worry if my ankle is going to explode?? LOL!! I don't think there is a medicine out there that some some law firm doesn't have a case against!

Luah

Hi ladies, home again after 2 1/2 weeks up north, skiing and hosting friends and family for the holidays. Happily, whole days went by (several, in fact, in a row! - lol) when I never gave cancer a single thought. Anxiety improves with time. I felt truly fortunate to be healthy, enjoying the outdoors and sharing precious moments with my husband and 2 sons - it all flew by a little too fast.

I've been catching up on posts because, although I don't post as much anymore, I do read this board and like to stay in touch with you all. The metformin discussion is interesting. I have a  follow-up MRI and onc appointment scheduled for this month - and I too will ask about metformin.

So good to hear from you LJ, Suze and inmate. Your resilience and determination are such an inspiration... and your contribution and insights on this board are invaluable. I wish you all a good response to your treatments in 2012. You ladies deserve it!

A happy, healthy New Year to all.          

Luah

Kymn: Nice to hear from you too. I can imagine that the holidays were a bit rough, hope 2012 brings much better things for you!  

BernieEllen

A magician worked on a cruise ship. The audience was different each week, so the magician did the same tricks over and over again.
There was one problem. The captain's parrot saw the shows each week and began to understand how the magician did every trick. Once he understood, he started shouting in the middle of the show "Look, it's not the same hat!" or, "Look, he's hiding the flowers under the table," or "Hey, why are all the cards the ace of spades?"
The magician was furious, but couldn't do anything. It was, after all, the captain's parrot. Then the ship sank. The magician found himself on a piece of wood in the middle of the sea with, as fate would have it, the parrot.
They stared at each other with hatred, but did not utter a word. This went on for a day and then another and then another.
Finally on the fourth day, the parrot could not hold back and said,
"OK, I give up. Where's the F***//g ship?"

mccrimmon324

Very Funny Bernie! 

How's the leg pain?  When was your scan again?

BernieEllen

Hi Honey. Scan Jan 11. Hope you are keeping well

mccrimmon324

I'm doing well, I go for bloodwork for my first follow up onc appt next week.  Breast is sore but I think it's from Rads.  Has been since middle to end of treatment, not painfull just occasional soreness and of course its got my anxiety up. 

How's your leg feeling?