Calling all TNs
Comments
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Thank you, Cocker. Your words always give meinsight, and a lift!
And Will Do, Lisa
I truly want this experience to make me a better person. (Hopefully one with a cute short haircut!
The Memorial is beautiful.
May all our 9-11 Angels Rest in Peace.
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9/11. My husband woke me early in the morning on that terrible day and switched on the bedroom TV. I couldn't believe what I was seeing and I couldn't believe there was so much evil in the world that could take away the lives of so many innocent people. I cannot imagine the suffering of all those people just going about their daily lives only to have it snatched away so cruely, the suffering of the families and the suffering of the rescuers. I still cry when I see a video or a picture of that day, so senseless. It shocked me to the core to think something like that could happen. The whole of NZ was with America that day. God Bless America.
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Amen
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Hi all,
I hope everyone is doing and feeling well! I'm hoping you ladies (and men) can help me find a new normal! I had my second opinion at MGH on rads and they said no. No more chemo (I only had 8 weekly Taxols so didn't finish those) and no radiation. At first I was happy... Happy MGH backed Dana-Farber in every way and happy to be moving on and getting back to my life... That was like 4 days ago and now I'm freaking out!
I don't know what normal is? I'm still bald and feel like I'll never look good again... I've lost a ton of weight (which is scary since people usually gain weight) My body is sore and I keep convincing myself I have bone cancer... It's awful! My husband and mom and well pretty much everyone just thinks I'm cured and need to go back to work and life asap! But we all know that's not true and I'm scared..... I'm leaving treatments on the table.... I'm 30 years old and randomly got a super aggressive cancer with no family history... I have always been extremely healthy and work at a fitness studio! I mean how can I just act like this didn't happen? I was suppose to have the best year of my life... But 4 months after having my baby I was diagnosed. In treatment I felt like I was fighting... Now I feel like I'm waiting... Waiting for bad
Any advice? -
LillieRose you poor wee girl but there is light at the end of the tunnel. All cancers believe it or not are aggressive especially TN we just don't have the added assistance of Arimidex or Tamoxifen or some other helpful drug. If it helps I only managed 7/12 of Taxol because I couldn't take it. I lost a stone in weight during the whole of my treatment mainly I think because of anxiety about going through it but I will tell you now you will put it all back on ugh. Of course your body is sore because you have been through chemo hell and everything aches and hurts. I was always super healthy too never got a darn thing so was so surprised to get the diagnosis. You are hardly out of having your baby and your hormones will still be all up the chute. Your Docs are happy with your treatment and they know what they are doing so have some faith. You will find your new normal but it will take a little bit of input from you and a whole lot of understanding from your family. They are probably trying to convince themselves that you are cured completely, and you are, like my old feller does but they don't have the same fears as us. Keep busy. Enjoy your wee babe. Get out. Get exercising. Laugh at nothing and everything. Go to coffee mornings with friends. Your hair will come back and you are young enough to have it grow back quickly and as long as you want it. Every time that feeling of anxiety comes push it to the back of your mind and believe me it will get less as time goes on. Take one day at a time and find something, how ever little, to enjoy each day. Most of all enjoy that beautiful wee sole that you have created. Big warm hugs to you and your new little one.
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Thank you Cocker 💛 you seem to always say the right thing! Very good with your words
I'm trying... Really trying to enjoy each day and enjoy my little girl. It's hard but keeping busy does help. I just wish I could me more positive and secure about a future. I just really want to see my girl grow up... That part is the hardest. Thank you for listening and your kind words! -
Lillirose, thanks for posting your feelings. I feel exactly the same way as my treatment draws to a close. 3 more weeks of radiation. My history is the same as yours too...none. I hate that I got this at 34 and it's so hard not to dwell on it every minute and go to dark dark places.
Cocker, your kind post really resonated with me too. You are so wise!
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Lisa, I am sorry to read that your brother in law was one of the many lost on 9/11.
Arlene, send my thanks to your husband for being one of the responders.
It is still so hard to believe that horror happened here in our country, - even though we watched as the smoke rose in the sky and watched the terror so close to home.
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Luv - I know it's not your ideal location, but I'm glad to hear things are moving along in the relocation department and you guys are figuring out a good plan. I'm envious, as building a home on 3 acres is my dream! Hang in there in the coming weeks before your check up. It's good you're staying busy with your sweet volunteer work.
Arlene - many thanks to your amazing DH for being such a courageous first responder that tragic day. Also wanted to mention that it's funny you bring up your feet being sore. This was something I had for the longest time after chemo. It used to get me down because after just a few hours of being on my feet, I'd have to take breaks and sometimes just call it a day and get off my feet completely. I just realized a few days ago and mentioned to my DH that I can walk all day now without my feet hurting. I never thought I'd be able to do that again, so I firmly believe you will heal and get there too one day soon. Sending you hugs.
Lisa - my heart goes out to you and your family for the loss of your brother in law. This is such a difficult day for our nation each year as we remember those tragic events, but it must be so much more for you all. Sending you and your loved ones many prayers.
Lillian - sending you hugs. Transitioning from treatment to survivor was/is by far the hardest part of the journey for me. I love everything Cocker said. (Cocker, you have a wonderful way with words that's always so comforting!) The best thing for me has been to just live my life as normally as possible. Not that I go around pretending it didn't happen, but I've learned if I keep my mind off it as much as possible, I can better stay in a positive space and worry less. Many wise women here told me over and over it would get better over time...and they were right. So I will also tell you..it gets better I promise.
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Thank you, Another and Ally. 9/11 always a tough day.
Ally, yes! My feet hurting is slowing me down. I hope the same happens for me. Thank you for the encouragement!
I hope everyone had a good weekend.
Cocker, on target, as always!
Hugs
Arlene
PS I know this sounds crazy, but I was very happy to buy my first pretty, post-recon underwire bra. It's the little things,I guess!
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Ally thank you. My words come from the heart because I know what all of you ladies are going through or may be it's because my maiden name was Hart !!. Is there any news on the baby front with your friend. I always look for your posts waiting to see those wonderful words. It will happen, I just know it.
Arlene I know how you feel about buying your new bra. I only had a left sided mastectomy and felt so self conscious when I went out only having one boob. I felt everyone would notice it so used to wear a jacket even in summer but the day I got my new prosthesis and pretty new bras and went out for the first time I felt Like a million dollars because I looked normal (even if I wasn't!! lol) again. I will never forget that wonderful feeling.
I agree about the three acres for our LUV I can imagine it would be wonderful for her and her three babies but I also can understand her feelings of wanting her home to be her sanctuary, where she is happiest and at peace, and needing to put down long term roots and to be close to her doc's whom she has faith in. Hopefully this new home is what she has always wanted and her husband is settled. Our LUV does wonderful work at the volunteer centre and deserves some happiness.
Well the sun's shining again, just need a little bit more warmth for my flowers and roses and we will be good to go. Have a great peaceful and symptom free day ladies.
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LillieRose, hang in there! It will get better. Just try to focus on having fun with your little one. We are here for you always though. Praying for you!
Ally, Cocker and any who I've forgotten, thanks for the encouragement. I am still going to be able to see my doctor's. They just won't be nine miles from me like they are now, but I have to tell myself it could be worse. I thought my four month checkup was tomorrow but it's not in my online chart in the upcoming appointment file they have for me. I also haven't gotten a call from a recording like I usually do two days before my appointments. I have it in my reminder app on my phone though, so I'll have to call first thing in the morning and see what's going on!
Maybe my hubby thinks a fresh start will be good for the both of us. I do love him and will always be grateful for how well he took care of me in my lowest of lows, especially when I was in the hospital with C Diff! I wouldn't have been able to do what he did.
Cocker, you always have a way with words that makes us all feel so much better! You're like the momma here to all of us. I think we would all agree to that! We couldn't do without you! We have been busy at the Doberman rescue. Glad the sun is shining! Hope your flowers do well
Arlene, you are right! It's the little things! You're getting there and it's good you're getting back into your groove somewhat. My feet still hurt at times, especially when I first get out of bed but it is somewhat better. It takes awhile for some of the kinks to get all worked out after treatment.
XOXO to everyone here!! Love all of you!
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16 hours ago Moderators wrote:
Hi All,
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us herehttps://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks Everybody
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Hey all, I copied the above post from the MODS from another thread, they asked for everyone to share it around....
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Hi everyone!
I wish I could get notifications when there are new posts here; I'd hoped having it as a favorite topic would do that.
Jenna--welcome! I'm so sorry that you have to be here, especially at such a very young age and such a tender time in your life. But I'm so thankful that they seemed to have found it early.
LillieRose--I can only imagine that you, like Jenna, feel like the rug got pulled out from under you. Ugh. I don't think there's anything about your feelings that isn't totally reasonable.
Teak and cc4npg--Congratulations on your 5 year anniversary! I'm so excited for you and it's giving me so much encouragement right now!!
Kraycee--welcome, girl! I'm glad you had the testing done. At my 4-week BC diagnosis, my sister was diagnosed with colon cancer at the age of 43. I'm in complete shock still over that one and I have additional genetic testing going on to see if there are some odd things happening in my family.
Ally--I am THRILLED that your doctor won with the MRI! I think it's insulting to the work they've put in getting their degrees when some bureaucrat decides what is and is not appropriate for their patients. I'm very hopeful that it's nothing to worry about, but you deserve to have the peace of mind. You've paid your dues in that regard.
I'm on Day 12 post Chemo #1, and doing just fine. I expected it to be worse than it was, and once I got past Day 6 I did pretty well. There's still significant fatigue and I hit a wall around 2pm, but it could be much worse. Some of the other ladies starting at the same time are really miserable.
I did go ahead and proactively shave my head. I figured out that if I skipped the cute short transitional haircut and went straight from long to buzzing it off, that I'd be able to donate it to Children With Hair Loss. So I had a 'party' with my girlfriends and my stylist shaved it off for me. We got ten ponytails out of my hair and into the bag!! WOOT! Mind you, it's still a shock and my body can't regulate temperature to save its life right now, but at least I got one up on the cancer.
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Luv - that stinks there's confusion about your appointment. I hope you're able to get it straightened out!
Amy - I had a party too! I called it a Buzz Bash.
Good for you for taking control and also doing such a lovely thing as donating your locks! So glad to hear you're feeling good aside from the fatigue. That was my biggest symptom post first chemo too. Meadow - thanks for the heads up on that! I'm going to submit a photo.
Cocker - it is so very sweet of you to ask how all is going. Our surrogate and I flew out to our clinic last month for our first try and she did get pregnant, but sadly miscarried at 5 weeks. It was most likely that the embryo just wasn't developing as it should. We've been quite private about the whole thing, but for some reason I felt comfortable sharing here. I'm trying to tell myself that we're blessed to even be trying and blessed to have a friend offering to do this for us. She and her family truly want us to have a baby as much as we do and that's an amazing feeling. But it still sucks and I'm still angry that God let us experience the joy of finally expecting after all we've been through only to take it away so quickly. And it's very hard to watch her go through the physical end of things on top of the emotional. Fortunately we have 2 more attempts and she's ready to try again asap, which again is amazing. The clinic we're using has good success rates, and the fact that she got pregnant, despite the loss, means her body knows what to do and our chances are still good. Hopefully we'll start everything up again in a couple months.
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Allydp!!! Thank you for sharing!!! Yes, yes, yes, what a blessing despite the loss... I know it will be the right time when it happens. My brother and Sister-in-law went thru it. Heart wrenching, emotional roller coaster, but in the end, they were blessed with two bundles of joy! Praying, praying, praying!!!
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Amy, good for you for taking control! I'm keeping you and your sister and family in my thoughts and prayers. One treatment is behind you and before you know it you will be done with the rest. XO!!
Ally, they forgot to enter my appointment for today, so I got in touch with my nurse navigator and she put me in for next Monday with my Oncologists Nurse Practitioner. She's great too and my Onc will be there so he will see me too. I was ready to get it over with but mistakes happen. She was really apologetic but it wasn't her fault. God bless her! I'm sorry to hear about the miscarriage. I think we've all been mad at God here for recent issues but He is forgiving and can handle it. I try to remind myself that everything is in His timing and things will work out. Praying for you and the surrogate! Hang in there hon!!
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ally- So happy to hear things are going forward with a baby! I'm excited for you! Having my girl is what is getting me through this! We need positives in our lives to keep us fighting!
Amy- glad to hear your tolerating chemo well! For me chemo got easier as I got through it! I know that is crazy! Just eat right and drink a lot of water! I actually shaved all my hair on my first Mother's Day! It seemed weird to people but I didn't want to make it a sad day! So we shaved it off and moved on to enjoying the holiday with the baby
I couldn't donate because I had blonde hair and no one would take it! I hope your sister is doing well! Littleblue- it's so hard being done with treatment but I'm actually enjoying it a bit too! I like not having to go to the docs all the time... I'm hoping like the ladies say time will make it better
being young sucks but we are also stronger because of it! Now if my hair would just come back?!? That is tough when your done with treatment... Still looking "sick"...Good luck with the last of you rads! LUV- thank you for your kind words! I'm trying to keep busy and hoping time flys by with no issues! I see your a dog lover? Me too! I used to have a dog business! I'm thinking about volunteering also! Sounds like it's been a great help to you? Animals are so healing
Cocker- you really do have a way with words
I always look forward to your posts! So upbeat and happy!Anyone I forgot...Thanks for letting me vent and understanding me ladies! I feel like I finally have people who get the new "me". Praying for all of you and wishing you the best!
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Hi there ladies! Now that I'm done with the hibernation phase post-diagnosis, I guess it's time I join in the fun here. No possible way I can catch up on this expansive thread, so I'll just start here.
I'm 33 years old with two precious boys, 2 and 5, and I was diagnosed with stage IIB, grade 3, triple negative IDC last Wednesday. I'm trying to to do too much research, because that is scaring me, especially since I do have at least one lymph node involved, but I definitely need to reach out for some support of like-minded women. I'm looking forward to getting to know everyone in the very trying days to come.
I had my first appointment with my BS last week, and have my first appt with my oncologist this afternoon. I'm definitely looking forward to getting some sort of plan together, and hopefully some anxiety meds so I can quit having so many panic attacks!
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aggiemegs, welcome to a great group of ladies. I think we might actually have the same if not VERY similar diagnosis so feel free to ask any questions you have! I'm still going through chemo (two more taxols, yayyyy!!!!) so I'm not as experienced as some of the other ladies on here but will definitely help!
After your plan comes together, things will definitely start falling into place, I promise. It's so overwhelming at first and we've all been there. Deep breath!
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Hi ladies,
Welcome to this group aggimegs. These women on here are incredible resources and amazingly helpful and supportive. You are in great company.
I also have a small child and when I was initially diagnosed felt like I was losing my mind. Anti-anxieties do help, but what helped me the most was when I finally had a plan for treatment in place. You will get through this. Wrap your arms around you and give yourself a hug.
Ladies, I have a question for all of you. I am post 2nd chemo treatment. I am finding I have pain in my left armpit and down my arm (same side as my cancer). Has anyone else experienced this? I did mention this to my oncologist, but he didn't even check it. He was not concerned. What should I do? Not worry about it?
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aggimegs, I'm so sorry you're here, but I'm glad you found this board and this thread. It was what kept my sanity together during that terrifying first few weeks. My PCM prescribed anti-anxiety meds and urged me to take them for as long as needed. And it helped me sleep, which I don't think I could have done otherwise.
But I'll tell you, what other ladies said is absolutely true now that I've started my chemotherapy: the very worst part has been that interim between the news of triple negative and deciding on a plan. I am WAY better now that I decided and began (I've had my first treatment and am only about 5-6 weeks ahead of your diagnosis). That in-between was horrific and absolutely more anxiety-provoking than anything I've dealt with yet. I promise you--this gets better. Come freak out here in the meantime.
Murphy, I haven't experienced that, but I hear a lot of women talking about similar kinds of pain during chemo. They tend to be the same women who are noticing substantial shrinkage in the size of their tumors or women who wound up having a very, very good response to the chemo. I am hoping that's what's going on! In the meantime, your oncologist should definitely tell you WHY he is not concerned so that you can get there, too.
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LillieRose, I do love dog's, Dobermans in particular, but I love all of them. I volunteer at a Doberman rescue and it takes my mind off all the bad stuff when I'm there. We take in some that have been sick or starved and it's so rewarding to see them bounce back and go to a forever home. I would recommend you get connected with a rescue group. If you just love the dog's they will love you back tenfold!
Aggiemegs, are you an A&M girl? I see you're in TX and have Aggie in your profile name so I'm assuming here. My husband got his undergraduate at A&M. I met him at Texas Tech while I was in school. He was getting his Master's there when we met. I tease him a lot but it's all in good fun! He likes both schools and I root for A&M now that we are in different conferences. It's actually a relief because on the football weekend when we used to play each other it was definitely a house divided! We played each other right after our honey moon in 1999 and Tech won. I never rubbed it in but my hubby didn't talk to me for a few days! LOL!! Anyway, welcome to the forum. We are sorry you have to be here but this is a great place! I was 36 at diagnosis. More and more young gals are being diagnosed but you are stronger than you think and you WILL get thru this! Don't get too hung up on the lymph node. Don't google, listen to your doctor's and stick with us! HUGS!!
Murphy, if your Oncologist isn't too concerned about the pain then I'd say don't worry. I know it's easier said than done. Try to remain calm and keep us posted!! HUGS!!
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Hi All,
Sorry to see so many newbees, but great place to be.
I am almost at 3 years & only had 2 doses of A/C. Doing good. Yes some side effects even with only 2 doses. MO says allergic reaction brought on bad side effects. Don't be so apprehensive about not finishing the regime. I surely didn't.
BTW on 9/11 I was in Grand Central Station to take a train to CT. Ours (my business partner) was last train out before closed station. We were stuck in New Canaan, CT overnight. Thank heavens we found a B&B. Got back to Station next afternoon. To a basically deserted Manhattan. No Cabbies, etc. Business trip done. Had hard time trying to find way home. Hotel was great! 9/11 is also my sons birthday. 33 this year. I get bad memories of that time. I pray every year for those we lost. Feel blessed as Wednesday morning we had an appt scheduled for near the towers.
Am still doing my yoga. I bought a commercial sewing machine & serger. So I now have a getaway room. Have a daybed in there with my machines & go in & read, relax or sew. My space. I love it.
Take care to all.
Marsha
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CarolinaAmy, you should be seeing this thread in your favorites if you added it...is it not there?
Aggi welcome!
Ally, thanks for sharing about the precious surrogate, I will definitely add her to my prayers.
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Aggi, I second what others have said--a plan will lower the anxiety a lot! You may be given the choice of whether to have surgery or chemo first. There are pluses and minuses to both. I opted to have chemo first because it would provide a clearer yardstick re whether my tumors were responding to chemo. And, I thought I would have a harder time with chemo than surgery and wanted to get that over with. Other women just want to get the tumor(s) removed immediately for their own peace of mind. From what I've read the order of chemo and surgery does not change the effectiveness of either treatment (Ladies, correct me if this is wrong). So when the time comes know that it is your peace of mind that counts. Not what the breast surgeon or oncologist would prefer.
All through this trust your informed instincts and all will be well. You said that all the research you're doing is driving your anxiety up. Maybe it's time to do other things that can distract you until you get your plan in place. Your anxiety is absolutely normal! Get anxiety meds temporarily to help. We will be here to share in your treatment as much or as little as you would like.
Hugs,
Peggy
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Murphy43 - Thank you so much! I'm already starting to feel so much better now that the train is rolling!
CarolinaAmy - Thank you as well! My oncologist did give me a scrip for Xanax, although I have yet to find the time to fill it! So many appointments!
LuvMyDobies - Yes ma'am, I am a Texas A&M Aggie gal! I'm staying far from google these days! Although to be fair, without google, I never would have found this place....
Meadow - Thanks!
Peggy - Yes, the beginnings of my plan are helping quite a bit. I was not given a choice. I was told that because of my age and TN, that chemo then surgery is the plan.
I met with my oncologist last night, then had a follow-up with the breast surgeon tonight, and we finally have a plan started. I will be doing 4 cycles of AC (every other week), followed by 4 cycles of Taxol (every other week), starting next week, assuming all goes as planned. I'm getting my port placed on Thursday, and was beyond thrilled to find out that my surgeon will knock me out for that, instead of just doing local anesthetic like I've read that some docs do! Yikes! And because I'm clearly a glutton for punishment, I will be getting a cavity filled tomorrow. Ugh!
So, it looks like AC and Taxol is a pretty common TN treatment. How is AC? Since it's up first....Just curious what to expect? Not gonna lie, I don't really "do" medical stuff, and I'm pretty freaked out by the amount of "stuff" that is going to be done to me over the coming months....
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Hi aggiemegs,
I found the first chemo treatment was awful. However, saying that, my second treatment was not so bad. the difference was that my oncologist changed my anti-nauseants, as it seemed the ones he prescribed the first treatment did not work well for me. My oncologist even asked me why I did not call him when I was struggling the first time. I didn't know chemo doesn't have to be awful and excruciating. Don't get me wrong, it still is no walk in the park. I agree with you...it is the fear of the unknown, but take it from me, always call your dr if you are feeling really unwell. Perhaps he/she can do something to help you get through it. Your dr is there for you and they want to help you get through it as best as possible.
I am about a week away from my third treatment and I am not so scared anymore. It does get better.
Ps I also was a glutton for punishment and did all of my dental stuff I had been putting off for years right before chemo. Ugh! But now I have a nice white smile to go with my bright white bald head!
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Murphy - Thank you so much for this! I'm currently thinking I will take the first week off work after each treatment, then work the second week. Hoping this will be realistic! My oncologist also told me that since I never had any morning sickness, there's a great chance that the nausea won't affect me quite as severely. Fingers crossed! And oh man....you're 3 weeks in and hairless already? Ugh! I was hoping it wouldn't happen quite that fast!!!! Going to get me a wig on Friday though, so I'll be prepared
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