Calling all TNs

MBJ

Laurajane:  There is a music festival nearby starting at 4pm--hoping the rain will be done with by then!!!  Hanging with the girlfriends!

Sugar77

Laruajane - Re: the best thing today was going out with my 10-year-old daughter looking for sillybands (they've just caught on in Canada).  Tonight is her very first hockey game. I got some gold seats through work for tonight's game (Toronto Maple Leafs versus Detroit Red Wings) at Air Canada Centre.  Both my DH and DD are huge Red Wings fans!!!!! We were thinking of taking her last December for her birthday but I had just started chemo and that never happened. They are both very excited and she's wearing my DH's Brendan Shannahan jersey tonight. I'm going to relax with the dog and rent a movie and rest up for tomorrow's Run for the Cure.

Mitymuffin - I know it's hard not to worry but the odds are in your favour of everything being benign with your daughter. I'm sending you good vibes.

MBJ - I love the new look.  You've gone from one extreme to another and each look is terrific on you!!!

Mimixx3 - welcome and thanks for posting your story. 

Lynn18

Laurajane:  The best thing happened to me yesterday afternoon when I finished my last chemo!  At the end the nurses brought me a certificate that said "Congrats" that they had each signed.  They each had a bottle of bubbles which they blew at me.  I wanted to hug them all.  They were all wonderful and I will miss them, but I will not miss the chemo.

Mitymuffin:  Hoping your daughter will be fine and is being extra careful and doing her self-exams.  This is a difficult time for our daughters.  Mine is only 13 and is already worried, even though she doesn't even need to wear a bra yet . . I tell her that by the time she grows up they should have a cure.  I am really hoping for that.

TiffanyF4

mitymuffin.  I totally understand your stress about your daughter.  I had a benign lump removed at age 22.  I am BRCA1 positive so the chances for my daughter who is 5yrs old are 50/50 that makes me sick to my stomach.  I hate to say it but I dread her going through puberty and even getting breast!!!!! My sister who is 37 also recently tested positive for BRCA1 no diagnosis of BC as of yet she is having a MX and immediate recon. She also has 2 daughters and it is our nightmare that one of our girls will be diagnosed. I would take this disease a hundered times over for my daughter to never have it!

laurajane

Mitymuffin- I'm sorry your daughter has to wait until next Friday. I know the waiting is so difficult. I can more than understand your concern. I'll be thinking of you both all week. Thanks for sharing your fun today. I smile thinking of you riding your horse. How fun to use those muscles again. I used to love horses when I was a kid but as an adult I have a kind of fear of falling off. I hope the weather was beautiful for your ride. How wonderful to get outside and do what you love.

MBJ- I hope you had a great time at the music festival. I'm glad your feeling better and hopefully kicked that flu bug.

I went to the Farmers Market with my daughter and grandson today. It was cold and rainy but we had a lot of fun. Apple tasting, music and jolly people in spite of the weather.  I bought 20 lbs of worm castings and 40lbs of organic tomatoes, seriously! I usually grow them but the ones I had planted in May got pretty neglected this summer so I figured why be bummed about that when I can just go out and buy them. She is going to come back Monday afternoon and show me how to can them. We did it once together and had so much fun. It may end up being really, really expensive tomato sauce in the long run, but I'm sure I will smile everytime I pull out a jar to use. By the way the worm castings are for my garden not the sauce. Have a great week-end.

Teka

Hi! Retrievermom,

Lucky you.   My hair is just starting to come in after 7 weeks out from chemo.   I'll stop covering my head as soon as possible.   I was never one to wear something on my head.   I am sure your hair looks great.

kad22

TiffanyF4  and MittyMuffin- I too have the BRCA1 gene and worry about my daughter who is 15 and my sister who has the gene also her daughter who is 19! Prayers are going out to you and your daughter MittyMuffin!!

Laurajane - hope you enjoy your weekend and are not stressing too much - prayers and hugs go out to you too.

Lynn18 - Congratulations on your last Chemo!!!! YEAH!!! YOU DID IT!!!

If only the people at Target knew!! LOL ;-)

I think my husband is having a suprise chemo free party for me today!! I am soo sneaky!! Yep I was right he just told me I have 50 people coming over today how nice of him!!

Gotta go - Hugs!!!

Swanny

Kad22 - So nice of your husband to throw the party for you.  Hope you don't have to do too much work.  He seems very thoughtful. 

Everyone knows that I won't feel very good for the next week but I hope some of my friends/co-workers will give me a cake or something for finishing chemo.  If not, I really need to think about how I live my life (so few real friends??).

Went to the "Owl" movie yesterday.  I wouldn't recommend it.  Thought it would be cute but ended up being boring.  I hear "Salt" and "Town" are both very good and very exciting.

Take care - hoping this week is over quickly.

MBJ

Lynne:  Congratulations!!! Wow, where did you get treatment that they did that??!!  What a wonderful thing that they do and they should do this for all of us to celebrate!!

Kad22:  Your husband sounds wonderful!  Enjoy your party, you deserve it!

laurajane:  LOL!  I was wondering what you were going to do with the worms!  I had a great night out with a very close girlfriend.  We walked around, watched a couple great bands, ate and drank great food and had a glass of wine at a wine bar to top off the evening.  It was really nice to feel "normal" for the first time in a long time.  Enjoy your tomatoes and canning.  Cooking and preparing food always relaxes me and puts me in a kind of zen place.  Lovely way to spend your day.

MBJ

Sugar:  Wow, you have a 10 year old daughter!  I didn't think that you looked old enough to have a daughter that age LOL!  Sounds like you had a lovely day!  Thanks for the complements--I am just so excited that my hair is now long enough to use a 1" flat iron!  Whoopie!!!

laurajane

Lynn- I think that is wonderful that you have finished and how nice to get that extra special congrats from your nurses.

Sugar- Hope you and your daughter had a fabulous time at the hockey game. 

kad22- To you and all of the rest of you that have the gene I'm so sorry and saddened that you have to worry about that on top of everything else.  I hope you had a fabulous time at your party. That was so sweet of your husband. Is he clone-able?LOL

Swanny- I am sending you a congratulatory cake in my thoughts. Double fudge with fresh whipped cream and strawberries on top. Oh! and a bottle of bubbly to celebrate. 

MBJ- Sounds like a lot of fun. I just love live music. It really gets the positive energy flowing. I'm glad you had a great time. Thanks for sharing. Being able to use a 1" curling iron is a great reason to celebrate. Wow! You'll hear the fireworks all the way out in LA when I finally have the need to use a comb. LOL

I met with my new clients today and they loved the final design (after negotiations on the first two). I hope the weather holds out I have more work lined up right now than I did last Spring which I love. It feels so good to be able to work again. Taxol is indeed so much easier than AC. I didn't work at all while I was on that. I'm going to go out and work in my greenhouse. It has been a beautiful crisp cool day. My goal has been to stay busy enough to try and not think about tomorrow to much today. Oh! The best thing that happened to me today was that my dog got sprayed by a skunk this morning and it wasn't me! He's a good blocker. I still felt so sorry for my dog, Charlie though. I used to think I kind of liked the smell of skunk. 

JenC

So on Friday the PA told me no chemo again due to the neuropathy and I have to meet with my Onc this Thursday to see if they are going to change me to a different med to finish the remaining 5 Taxol or say move on to radiation.  Not sure how I feel about thatl.  Although he said there is more of a chance of the neuropathy becomming permanent than there is of any harm comming from not finishing hte chemo I am still a little leary.  we shall see what happens this week.  Just want to know when I will be donel.  I have the simulation at the radiologists on Tuesday and have my last fill on Wednesday so I am getting anxious to be done.  Hope everyone is doing well. 

Jen

Sugar77

MBJ - you're too sweet to think I look too young to have a 10 year old when the reality is I was older when I had her and am 46 now (she turns 11 in two months).

Laurajane - too bad you weren't closer to Mississauga.  My yard/garden could use an extreme makeover.

The best thing today was participating in the CIBC Run for the Cure. This is a run that takes place in cities across Canada and today was the first one ever in Missississauga.  Twenty thousand runners participated in our local run today.  I had posted about this on the Canadian thread but think it's appropriate to share with you ladies, too:

(post from Canadian thread) 

The weather was cold but I completed the CIBC Run for the Cure in Mississauga. I was running for all the wonderful women fighting the same battle. I've received strength from each and every one of you this past year. My husband, daughter, and little bichon-poodle also participated on my company team. I'm proud to say I raised $10,180 individually and my company team (Genworth Financial) raised $25,435 for the Mississauga run. We also had teams in Halifax, Montreal and Red Deer so I'm not sure what our overall total was. I feel like we made a difference somehow today. I really hope we did!
 

MBJ

JenC:  Are you taking any of the supplements?  Sorry if i'm repeating a question that's already been answered, did I mention chemo brain?  The neuropathy is really awful but you have to trust your Onc as he probably has years and years of experience and what is best for you. 

Luah

Hey Sugar:  I did the Toronto Run for the Cure. It was a little chilly (like 8 degrees C and breezy!), but lots of warm spiritedness.

LRM216

JenC:

Right after my first Taxol, I got really bad neuropathy immediately in all of my fingers and in all of my toes.  Onc switched me to Taxotere for the remaining 3 DDs.  My neuropathy never worsened throughout the taxotere.  It's a tough chemo, but it is a bit easier on neuropathy.  Even Abraxane is hard with neuropathy.  You may want to ask about the taxotere.  My existing neuropathy from the first taxol stayed with me for about 10 months after my chemo ended, but it never worsened, and I'm just about as good an before the taxol.  Good luck.

Linda

Lynn18

Kad22:  Congrats to you also!  I hope you have a fun party.  What a nice husband you have.

Swanny:  Congrats and hope you feel better soon,  I hope your friends do something special for you.  If not, I think you should buy yourself a present!  That's what I did.

MBJ:  Thanks for the congrats!  The nurses at my onc's office are very special.  I love your new hairdo.

kittycat

Laura - I start to get really cranky on Friday night (after having chemo on Wednesday)!  Maybe we can have meltdowns together!  Ughhh...  I am so over chemo!!!  I am so sorry to hear about your lymph node.  I hope it turns out to be nothing.  I can't believe your regular doctor is more in tune with your cancer than your onco!  That's crazy!!!

Mitymuffin - I hope everything is okay with your daughter.   Hopefully everything comes back benign.  I can imagine how scared you would be though.

Swanny - congrats on finishing chemo and growing in hair!  My hair is starting to grow back in, as well.  It's really  gray.  One of my friends that finished chemo a couple months ago said hers grew in gray, then grew in dark brown.

Sugar - that's amazing that you raised so much money!  Good for you!!! 

So, now I started developing neuropathy in my toes.  They feel numb.  My legs ache.  Everything kind of aches!  I'm taking the L-Glutamine.  I was really hoping to avoid this neuropathy thing! 

jenn3

I've been busy these last few days, but wanted to pop in to say hello and hope that everyone had a great weekend.

dirikuwanita

Jenn3: hello, hope you get a great day too.

Hi ladies... I'm very glad to hear happiness from you all. In fact, some of you still can do some positive activity and enjoy it with people you love. It's so worthy to share every exited activity here, or share grief or sadness.

My feeling told me, this is my house, since I'm TN too.  

Today I had just getting the 20th radiation, and was examined by the doctor since I often got cough after taking deep breath. The doct (Radio-oncoloogyst) predicted maybe it was because of some radiation effect that called 'peumonytis radiation', then he suggest me to get chest rontgen. But I keep still worried, I worried, the cause is not only a radiation effect, how if that is the symptom from lung mets? Oh God... I'm scared to see the result tomorrow..

dirikuwanita

Jenn3: hello, hope you get a great day too.

Hi ladies... I'm very glad to hear happiness from you all. In fact, some of you still can do some positive activity and enjoy it with people you love. It's so worthy to share every exited activity here, or share grief or sadness.

My feeling told me, this is my house, since I'm TN too.  

Today I had just getting the 20th radiation, and was examined by the doctor since I often got cough after taking deep breath. The doct (Radio-oncoloogyst) predicted maybe it was because of some radiation effect that called 'peumonytis radiation', then he suggest me to get chest rontgen. But I keep still worried, I worried, the cause is not only a radiation effect, how if that is the symptom from lung mets? Oh God... I'm scared to see the result tomorrow..

JenC

Thanks Ladies for the advice.

 MBJ - They have not sugested any supplements to me for this so not sure which ones might work.  I love he hair:)

gillyone

dirkuwanita - welcome to the TN thread. You are among friends here. Good luck with your radiation treatment. I hope you get good news today. Is your skin burning?

MBJ

LADIES WHO HAVE NEUROPATHY:  I went on to my favvorite site which does extensive research on the latest is medicine and I did a search for neuropathy and it gave me 10 pages, not all related, but if you click on each individual medicine that comes up, it gives you all of the info and you can decide if this might help you.  Here is the link: http://search.lef.org/search/default.aspx?s=1&QUERY=neuropathy

dirkuwanita:  Welcome to our little group.  I hope your dr has good news today and that your symptoms are treatable!

kittycat:  Sorry you are now having neuropathy.  I posted a thread above, maybe there is something here that can help us with it better.  Mine seems to come and go no matter if I take the supplements or not.  I decided to do more research on this above.  Here's hoping we can get help with this.  Hang in there with the chemo.  It gets old really fast.  Are you still working while undergoing treatments? 

JenC:  I posted a link above, maybe there is something there that can help.  You have to go to each individual medicine to see what it does and if it can help.  I like this site because it also provides the back up information to go  with it including all of the research. 

Hi Jenn3:  Hope you have a great week!

Sugar:  46!!??  I never would have guessed!

laurajane

Hi Everyone! I'm still in a state of shock. I went to my Onc for an exam this morning and she was shocked at the size increase in my tumor and lymph in three weeks. So she scheduled an ultrasound which I had done at 11:00. The results showed that my tumor is actually larger now than when I was diagnosed in May and I guess they were hoping to find (I can't remember the word)more dead cell activity but still looked completely active. It breaks my heart that I have wasted 4 months of my life doing AC and Taxol (7 rounds) and my cancer is even more aggressive now. The doc explained to me that the Taxol may have been working on some cancer cells which explained the extreme decrease in size the first 4 weeks of Taxol but those cells that are resistant to Taxol have received more blood and oxygen and are growing even more aggressively now. Their plan is for me to have surgery ASAP (Which is their ASAP not mine. I wish I could have surgery today). I meet with the surgeon on Thursday at 2:00PM. I feel so much anger because I feel like another 3 weeks have been wasted when no one would listen to me about the increased pain and swelling in my tumor and lymphs. Docs and nurses all poo-pood it saying it was either in my mind or from the chemo. WE ALL KNOW OUR OWN BODY BETTER THAN ANY DOC., ONC, OR WHOEVER WHATEVER! RIGHT! I do feel lucky that my personal friend/doc listened to me and forced my Onc to take this seriously. Otherwise, I would not have even seen her for 2 more weeks. She explained to me that sometimes Taxol just doesn't work. Duh!!! She said I would now be eligible for carboplatinun which has shown great results with my particular type of cancer. let's see. In May when I was diagnosed they said if I didn't opt to do chemo I would probably have about 9 months to live so what does this mean now? I didn't realize until today that there are different types of TN which are all aggressive but that some are more aggressive than others. I just really needed to share and I apologize if this post scares anyone. From what I have read Taxol is usually a great chemo for treating most TN. I'm just really scared, scared, scared and way sad. I don't want this to sound like a whoa is me but I am thinking why me? when Taxol has worked for so many other women. Since my cancer has been activly growing for the last 4 months while i have been on chemo how far has it spread. Scary s**t.

F***k Cancer

Sugar77

Sorry to hear about the neuropathy.  My SIL did Taxol/Carboplatin for endometrial cancer a couple of years ago and she had neuropathy.  She said it did eventually clear up after chemo ended.  I think after about six months, it was completely gone. 

dirkuwanita  - welcome

Hello everyone! 

Lynn18

Laurajane:  I am sorry to hear your news.. .hopefully you can get your surgery quickly and then start treatments that willl work better for you.  I wonder if anyone else has had this, chemo- resistence, can tell us about this?  Hang in there!

cc4npg

Laurajane,

I've been lurking on these boards for a while now.  I don't post much really, but I do a TON of research and reading.  NoSurrender has a forum for triple negative too, and there is a research person on there that posts frequently about different types of Chemo. I'm pm'ing you the link because I don't know if I'm allowed to post it.

I wondered if you went over there and posted or pm'ed this person, maybe they might have some suggestions for your onc.  Again, from all my reading, this person seems to really know their stuff.

Keep in mind, there are bunches of types of Chemo out there, as well as the new PARP and other clinical trials they're researching right now.  A whole bunch is being focused on triple negative and genetic mutations.  I'm sure they're going to get you into surgery just as quickly as they can now.  Make sure to ask them about any other tests that may ensure nothing else is going on... maybe blood work to check various levels and such.

I'm pretty new to all this, so I don't always know the correct terminology or name of tests.  But check out that site above and I am saying a prayer for you upon posting this message.

My bilateral mx is this Thursday and I'm quite frightened right now too.  I've never done well prior to a procedure... anxiety gets the better of me.  I'll be glad when it's over so I can begin healing... at least until the chemo, which I'm almost sure I'll get being Triple Neg BRCA2 pos.

clariceak

Laurajane - I'm not TN, but I have a friend who was dxed last Sept like me.  Her tumor didn't respond to chemo so she moved on to surgery and radiation and is doing well.  I'm really sorry that your onc didn't listen to your concerns.

Claire82

cc4npg - can i have the link too