Calling all TNs
Comments
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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.
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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!!!
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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.
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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
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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!
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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.
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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.
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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
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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.
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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!
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I've been busy these last few days, but wanted to pop in to say hello and hope that everyone had a great weekend.
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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..
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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..
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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:)
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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?
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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!
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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
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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!
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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!
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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.
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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.
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cc4npg - can i have the link too
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Laurajane - I am so sorry to hear that the chemo has not worked. When I was initially diagnosed I was told that there are those that are diagnosed and need surgery ASAP for very agressive cancers and those that can wait a few weeks. I thought that I would be the one to wait - nope I had surgery two days later. I'll pray that your surgical onc has the same idea and doesn't wait, but squeezes you in as an emergency - push for it. (((hugs))) and prayers headed your way.
dirk - welcome to the place that we all wish we didn't have to be - the support here is wonderful and the women (and men) are really full of information that the doctors don't always tell us.
I went for a follow up today and was told I'm healed and whenever I'm ready for recon (DIEP) I'm good to go. I've been putting it off because the thought of being "down" again is just too much right now. It would be nice to have boobs again. Guess I need to "Just do It". I also have some lymphedema, which I had noticed and started taking care of, but hearing it from the dr made it real. Ugh!! It's not too bad, aches a little, but isn't painful. Ahhhhh.....the joys of BC.
Ohhh - I almost forgot. My hair got wind blown today - yep, my hair actually moved with the wind and got a little messed up!!! I so need to update my picture, which I will try to get done before the end of the week.
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Oh LauraJane, this is so hard for you. If I'm not being intrusive by asking, have you done genetic testing? In other words, do you know your BRCA status? I keep reading about research and tailored therapies being done at M.D. Anderson's and I wonder if a second opinion there would be an option for you. Or a second opinion at another big research hosptial. Of course you want surgery now ASAP, I did too, so I understand.
When they remove a tumor, I wonder if they keep a part of it so that more tests can be done on it later? This is such a fast evolving field (not fast enough for us of course.) I have a meeting with the surgeon who removed my tumor, back in April at Sloan Kettering, and I think I will ask him if they keep a piece for future testing (for protein expressions, heat sensitivity etc.)
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laurajane- http://www.tnbcfoundation.org Also, No Surrender site has a researcher there with good info. Good luck; scary stuff to be facing. Deep breath, release, repeat.
Photo below is of MacFry and his new friend JR (Johnny Reb) checking the books for historical accuracy. They met during his recent trip to Gettysburg Battlefield. (Next time he will bring home Billy Yank).
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Laurajane - I think we must have both posted at the same time because I didn't see your post earlier. I'm so sorry you are going through this. I'm praying you can get surgery right away -- please let that happen!! The No Surrender Website is very good.
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gillyone: I hope so. The result wil be at 11 am. Indeed , my skin a little darker, but not bad, I feel smarting in my armpit and sometimes feel pain on my skin.
MJB: Thanks. Onething entertain me is, the doct is quite handsome and very polite to every patient... wooohooo...
kittycat: I hope you are getting better day by day
laurajane: I'm so sorry. Cancer is F**k indeed, but don't be defeated.
Jenn3: Can u explain me about ASAP? what is that?. I'm so exited to see your update picture, after make over , off course
hhfheidi: cute picture...!
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dirikuwanita- well, it *IS* important to have a handsome doctor... :-)
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LauraJane, read Godsgirl's encouraging recent posts under the Not a Typical Triple-3.0
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LauraJane: I am so very sorry you have to go through this, I just thank God your doc/friend took the bull by the horns and got this noticed. The advice you received about going over to the No Surrender site is excellent. Go over there - start a new topic under the Triple neg thread, or the Edge's Cam site and title it something that will get Edge's attention immediately, i.e., Edge need help ASAP, or something to that effect. He is wonderful and extremely learned - as this is what he does. He is a fantastic researcher and is a part of that site. He WILL give you loads of info specific to just you. God luck, Godspeed. You are in my prayers and thoughts.
Linda
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