Calling all TNs

anotherNYCGirl

I am so far behind in reading and responding!

Happy to read Ally and Luv's updates!

Welcome to the newbies. You will see, this board is the BEST at helping us get through ANYTHING!

Marsha, - sorry you have the flu! It can really do you in for a couple weeks. I have had flu shot every year , even while on chemo, I think.

Cocker, Meadow, Al, Shari, Arlene, and all here, - hugs and BE WELL wishes.

HausFrauMi

Thank you everyone! Hard to copy all the names when using the iPad but hubby is busy on the laptop doing taxes. Since we lived in Germany part of last year his company has Deloitte prepare them and everything has to be submitted to them by the end of Feb! Last year our return was 90 pages long US, NC and German returns. We thought it would be good to throw in a house sale and purchase plus Corp relocation for 2015! Maybe we will reach 100 pages! I'm looking forward to next year when we only live in 1 place except we will have the huge medical deduction.

I'm sad to see new people keep joining our group I hate that we are all here but it feels good to know there are sounding boards and compadres

Big meeting MDC tomorrow and port placement scheduled for next Wednesday

I'd be lying if I said I wasn't nervous. Should not have read those online stories about people taking the "Red Devil" chemo!

Is it normally 4 AC (every two weeks) then 12 taxol weekly for most people? Or 8 AC? Was trying to estimate when I would finish this summer and now I can't remember what the MO said. Other than 5 1/2 months approx.

Mamiya

Haus, I think it is 4 AC and 12 taxol. Where do you live in Germany? I lived there for a few years myself! And is NC North Carolina? I lived there TOO!

HausFrauMi

Mamiya,

We were in Franfurt July 2013-July 2105. It was awesome! Kids can speak German with an almost native accent!

Left Hickory, NC (sold house there and then relocated to Michigan in August/Sept. My family is from the Hickory area so I grew up visiting. Hubby and I spent a few years in the Charlotte area and before we started dating I was in Raleigh. I've covered all the major areas but Greenville I think! Graduated college from Western Carolina. We lived in Pittsburgh for 5 years and it prob my favorite place! So far I like Michigan but it's so far when we need to visit friends and family

LoveMyVizsla

That is the correct normal schedule for AC +T. 4 doses every two weeks, then weekly T. I had no issues during the A infusion. The nurse said some people get a sinus thing during the C. I could feel it, but it was slight. I plan on sucking on an altoid mint during the cytoxan this time to see if it helps.

Cocker_Spaniel

I had 4 AC but with three weeks in between to help with sickness. Then I was supposed to have 12 weekly Taxols but only managed 7.

Shopgal2

hausfrau act chemo is usually ac every other week which is dose dense, or every 3 weeks. There is a lifetime limit on the amount of adriamycin a person can have because of its possible cardiac effects.

Taxol can be every other week which is dose dense for 8 weeks or 4 doses or every week for 12 weeks.

cassylou

Hi everyone, I feel so out of touch with what everyone's up to. After 7 months chemo, double mastectomy with immediate diep and ovary and fallopian removal, I'm now well on my way to recovery and now back at work. I remember thinking during chemo that I really didn't feel that bad and that I was let off easily with side effects. Now it's coming up to 4 months post chemo and 2 months post op and I'm feeling so much better and I realise that I did feel a bit crap. It was not nearly as bad as I'd imagined, or I'd read, but I just felt like a diluted version of myself. It's amazing what our bodies and minds can cope with when pushed.

I've been catching up on a few posts and quite a few people have been asking about scans. I had a couple of breast ultrasounds during chemo to check progress (my tumours couldn't be felt) but that's it. The only scans that I've had through this whole process is a bone scan when I had recurring bone pain, along with an abdominal CAT scan prior to check the blood vessels for the DIEP. No scans planned unless checking symptoms. No bloods either.

Luv and Allydp - I'm so glad your scans went well. Onward and upward

HausFrauMi - the standard here in oz seems to be 4 X AC and 12 X weekly taxol. My Ac's were three weeks apart but my friends were 2 weeks apart. Btw - we're still waiting for the photo of the rocking hair style!!

Al - fairy godfather maybe, as you always seem to come to the rescue with such sage advice for many of us

Welcome to all the newcomers and much love to everyone else on this great thread

C words - camaraderie surely!

Love Cass x

HausFrauMi

gotta figure out how to load a picture!!! I'm too dependent on iPhone and iPads and the Book of Face easy uploading. Haven't done it "old school" in a very long tim

jenjenl

On Friday the hubs and i are headed to hawaii for a week, adult only trip. We do these trips every 2 years, last time it was St Martin. Not looking forward to flight.

We also decided we are moving to Charleston. We had the house on market, then i was dx. 3 years clear so we're going to do it. Don't want to just sit and wait fir the other shoe to drop. At lot of stars have to align but I'm hopeful. Need my job to let me work remote...that's 60/40 on it happening. But im sick of my job so if they say no ok. Puttng house on market in April, with hippies to close in June. Im tempted to push for a scan, a little worried to leave my support system. I don't want to regret not moving to Charleston so lets do it!!!

StefLove

Haus, don't let the AC stories scare you! Is AC fun? Not at all, but many of us had minimal side effects with it. I was definitely tired and run down but it's doable. Thursday I would have the AC, Friday i would go for my nuelasta shot, Saturday and Sunday I would bum around the house and lay on the couch and watch tv. By Monday it wasn't much of an issue to be up and out of the house. I did work through treatment just to keep my mind off everything!

avmom

Haus, I agree that AC isn't fun. I did 4 AC, dose dense (every two weeks) followed by 4 paclitaxel ("T") dose dense (every two weeks), with Neulasta one day after each round. I had pretty bad side effects, but if you keep your medical team up to date on any side effects, there are pretty good treatments to deal with them. I had lots of nausea, but there were meds that kept me from being dehydrated. I mostly stayed home during chemo, but I was immune suppressed and my job involves lots of dealing with people. My counts were never low enough to need a transfusion. I found that day 4 through 8 were the hardest, because the fatigue would kick in after the steroids from days 1-3 wore off. Everyone is different, and your medical team will want to help you manage any side effects you might have.

HausFrauMi

JenJen GO FOR IT!!! We moved up here and don't know anyone. Is it easy No but its doable. I moved during the middle of my 1st pregnancy and it wasn't that much of an issue at all. Don't waste time and go live your dream! I grew up outside of Charleston in Summerville. Feel free to ask if you have any questions or school help, medical...I have a lot of friends still in the area that are teachers, doctors and everything in between!

HausFrauMi

So meeting went well today! It was agreed upon by the big group of doctors to have me start chemo first (I'm in the gray area tumor size wise). Then surgery then radiation. They offer such wonderful services thru the cancer clinic free of charge and will help with transportation and assistance if we need it--like house keeping! I met with the social worker to talk about our son and his emotions which was very helpful. She will see any of us for free counseling if needed. I picked out a cute soft aqua head wrap that ties in the back! Gotta make the best of this situation.

AND I figured out how to post my profile pic! Got hubby away from the computer for a bit.

Mamiya

Haus, nice pic. And, I think a good attitude is everything so glad to hear that you are making the most of a lousy deal.

I lived in Heidelberg briefly, then Mannheim, then Bamberg. I also lived in Fayetteville, NC. Now I live in Illinois and miss the mountains (Smokies, Alps, They were all great)!

SA8PG

Jenjen

Love Charleston. Lived there for 3 years. I'm proud of you for "living". Prayers that your home sells quickly. Please keep us posted on the process.

We are going to move to the country instead of waiting. I am also in the mind set of moving forward. We are not guaranteed tomorrow & I really want to unpack all these boxes that have been waiting for me. (Moved to Texas when I was 35 weeks pregnant then found out I had cancer. Been renting the past year and a half until I was well enough to purchase a home again.). We are going to do a scavenger hunt for the children to surprise them.

Welcome Haus. Summerville is lovely. How neat that we all share some Charleston time.

Luv I am so glad to hear you are well.

On the topic of stopping treatment early I did not receive my last taxol due to neuropathy so I received 3 out of 4 treatments. I was bi-weekly dose dense. Had a scan after treatment and still showed I had 1 cm left of mass. When I received pathology back though it was all dead. I got a PCR.

Cass so great to hear that you are doing good and enjoying life after that long stint of treatment and surgeries. Glad you are moving forward.

Sending you lots of love & prayers. Sorry I did not list everyone on here on this post. You guys are in my thoughts.

Much love

G

Peabrain

@Haus - Note that Carboplatin is often added to the Taxol, either weekly, or every third treatment, depending on the MO. Recent studies (mostly out of Germany) show that Carboplatin can be very effective for treating triple negative tumors

Meadow

Haus, love this picture and I am so glad today went well. You are off to a great start.

Jen, congrats on the move to Charleston. Did you choose it because you have vacatione there, and fell in love with it? I have visited twice, yes, so wonderful.

(((Another)))

LoveMyVizsla

Do they give everyone Neulasta/neupogen during Paclitaxel, or is it just for AC?

cassylou

HausFrauMi - great hair. I'm glad you persevered with the photo!

Jenjenl - good luck with the move. What an new exciting (non cancer) chapter in your life.

SA8PG - I hope you're feeling good after your Diep and you're happy with the results.

Lovely ViZsla - I had Neulasta whilst on AC and Neupogena whilst on Paclitaxel

x

Shopgal2

hausFrau good luck. I did act & it's tough but take it 1 treatment at a time.

Luv I did dd and had neulesta body injector after every chemo except the last.

jlstacey

HausFrau- we have no family in MI either. DH is English and I'm from Indiana. Where are you getting treatment? I did neoadjuvent chemo, 4 dose dense AC and 12 weekly Taxol. I finished 6/18/15. So welcome to Michigan. It was so nice of Gov. Snyder to give you a welcoming gift of TNBC. He gave Flint lead poisoning, so I don't which is worse. 😟

Jen- that is so awesome you are moving to NC! DH and I have been talking about doing that for over ten years. I'm afraid that isn't going to happen now as he got a job at Ford and loves it. So, I think we will get a lake property instead. Good luck on your move!

Viszla- I had neulasta During AC but not T.

I have my DIEP flap surgery in two weeks. I'm so ready to get these TE out

Geeper

Hi everyone- thank you for welcoming me. Thank you Meadow for letting me know about this thread   Mamiya- is also friend of mine through the IBC thread. Please don't say that you are not a great example because you are. Both you and Meadow have helped me a lot. I don’t know what I would have done without you guys. I hope that Taxol works for me. So far WBC's have been good. My 14 year old son has been battle bad cold close to a week now. I have been trying so hard not to get sick. 

I'm glad  I am on the TN board with all you supportive ladies and bros. Hugs to you all. Best of wishes to all.

Luvmydobies

Thanks again ladies!! Feeling much better today, but think I may be getting a cold. I have that tickle in the throat. That's elementary stuff though! Wow I really need to catch up on everyone's post! Cassylou, congrats on your recovery! Sounds like you're doing well. So great to hear!

Jen, have a blast in Hawaii and Charleston is beautiful! Congrats!

HausFrauMi, the comedian Jon Reep is from Hickory!! He's hilarious! Hubby and I saw him perform in Raleigh. Have you heard of him?We are in Greensboro. Love NC!! Don't get too hung up on the horror stories about chemo. I did and I was scared but I never got sick from chemo. I did get C Diff but it was from antibiotics. Take the meds they prescribe and you should be ok. Everyone is different. Drink plenty of fluids and get plenty of rest!

LoveMyVizsla

Well, thanks to low counts, the doc reduced my AC dosage by 20% today. She also said she plans on giving me neupogen for a couple of days after the taxol, but that is nine weeks away.

Sitting here on my infusion bed, waiting for the cytoxan to finish. I feel a nap coming on during the trip home.

HausFrauMi

Good FRIDAY morning everyone!

I told the kids that I choose to be happy and smiling despite this diagnosis. I will not allow cancer to turn me into a sad miserable person--its not me!!!!! Will I have crappy days where I feel like total bleh-sure but even then I can still make a joke about it! I keep telling them I am hoping for some super powers

jlstacey-I am going to Troy Beaumont (Dr Gold-BS, Dr Hanna-MO and Dr Nandular-radiation). conveniently only 20 mins away

peabrain- At the moment from what I can tell---I don't meet the carboplatin requirements but I meet with the nurse from oncology to learn "all about chemo" and will ask about it.

mamiya-I lived in Fayetteville for a year of hell!! My first stepmom was from there which was how I ended up in Fayette-nam. Left for Raleigh after that and better job opportunities then met my husband and headed to the Charlotte area. My family is from Hickory

Luvmydobies-I have a few friends and relatives in Hickory that are personal friends of Jon Reep. My old coworker is very close friends in fact! They hung out when he had a show in Charlotte and any time he is in town.

Geeper

HausFrauMi- Happy Friday! That's the spirit!! I have done the same. I refuse to let this diagnosis get the best of me nor will I let it define me. Nothing but laughter in our household and a sense of humor. I have my crappy days, but my family always manages to crack jokes and make me laugh. I already feel like I have some super powers. The kids (teens) were calling me Yoda this week because I only had patches of hair with strings of hair coming down. Finally, shaved my hair today and my head feels so much better. May the force be with you!

bethdawn

Hello Fellow TNs.  Recently had surgery January 12, 2016 as Oncologist recommended a break from the chemo since I ended up in the hospital 12-11-2016 to 12-19-2016 (oncologist doesn't think it was because of the chemo).  Had lumpectomy and axillary dissection in left arm and have not regained full range of motion of my left arm.  The recovery from the axillary dissection is much longer and more painful than I had imagined it would be.

Anyone have any idea how long the recovery period is?  I have been recommended to begin physical therapy but not sure how that will work during chemo as I am restarting and won't know what side effects I will be dealing with as . . .

I will be restarting Taxol on Wednesday, February 10 on a weekly basis (for 9 weeks) which will be a lower dose than the biweekly Taxol of which I had one round on Dec. 2, 2015.

LoveMyVizsla

I want to say I noticed much less node incision pain in weeks 3-4 post-surgery. Good luck.

jenjenl

DO the PT, it helps tremendously! I found it to get great during chemo. Got me out of the house and moving. I couldn't lift my arm above my shoulder than 3 weeks later all good. I still have pain here and there but i think its more from scar tissue.