Calling all TNs
Comments
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Hi everyone, I finished chemo and radiation almost a year ago now. Tomorrow I go for the cancer control tests and get the results on Wednesday. How do those of you who are being tested very three months deal with it. I get so destablised in the week before and my nerves are shot. People say don't worry you can't change the outcome which it true but it is such a horrendeous journey the weeks before the controls. I am glad I went back to the forums as I have not posted for over a year if not more and glad to be with people who have been through the worst of it and have understanding. Thinking of each and everyone of you and praying for no reocurrences. LJ great news and hope everything will be okay. Waving from Prague...
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Help support those who have been touched by cancer and find others like you at www.ihadcancer.com, a new social support network for fighters, survivors and supporters! You can search for people by age, gender, location and type of cancer on this site created by a breast cancer survivor!
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Hi everyone. Back from a wonderful vacation. Already missing it.
LJ: Great news. I'm sooo relieved and happy for you. You are in my thoughts.
Suze: Very happy to hear that your SE are manageable. Did your headaches subside? The ocean was great
.MBJ: Sad that you are maybe dealing with a new thing. We are here for you. ((Hugs))
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Prior to dx, in January, I was feeling tired and had problems with my digestion. Had alot of reflux and heartburns. So in March I had started to change my diet and lost about 15 pounds and was feeling great. Then in June I discovered the lump. The only very stressful event that went on in my life was, 4+ years before, when I got pregnant with my little boy, they told me that they thought he would have down syndrome. That US dx was based on the difference between the lenght of his femur and the size of his head at 20 weeks, the proportions between the two were not good. I had been waiting for that child for so many years because I wasn't able to get pregnant until that time. They suggested ending the pregnancy a couple of times but I knew I was keeping him no matter what. But it was still a major shock when they told me. Finally gave birth to the most beautiful and healthy little boy. So when I heard about my cancer, I immediatly linked my BC to that stressfull event.
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Hi Sylvia
Your post means sooo much to me, thank you. We seem to be alike in our receptors, 0% negative for ER and 5% positive for PR. I think the anti-hormone has really messed me up just because I really am a TN and such a low positivity should not be given anti-hormone. I am going to write a long letter to my Onc. and tell him what I think. Really, I am so mad. So happy to hear that you are in the clear after six years. Keep it up and thanks again so much for giving me such valuable input. As of today, I have decided not to take any anti-hormone, no way.
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CathyMoss: what's a cancer control test???
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Hi Fighter every 3 months I go for blood tests and ever six month mamogram and scan or something like to see if the cancer has come back. And I always get destablised the week beforehand. Most of the time I can ignore the fears and just get on with enjoying my life but I just get so scared before the tests. I was just wondering how others deal with this horrendous time. How are you? Thanks for asking. Cath
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Ladies, its been a while since i last posted, but have been keeping up with all your post...sending prayers to each of you....
I have a question. Maybe to TMI...but i need imput! This is about the only place that i can speak my mind...lol I finished chemo May 10, in June I started my period, it was extremely heavy...last 18 days... Again my period around the 13th of this month...still going strong and beyond heavy...I use a "super plus" tampon and an overnight pad..changing every 1-2 hrs... has anyone else gone thru this...does it sound normal...I talked with my rad. onco today and she suggested i see my gyn..which i have my yearly scheduled for thursday but still curious to know if anyone else has experienced this.
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Moe: no cycle yet and I finished TX in Feb. i have an appt later this month and I would like to know if this is perm or not. not planning on expanding the family, but you know I would love the freedom of enjoying myself w/o the worries. HEY there is still some dance left in this chick. I would definitely check things out it never hurts to know.
Cath: maybe it's tumor markers?? i know that's what i have done every 3months and quite a few others. no scans unless something hurts. nothing does, but I want one and then I don't want one- if you know what i mean.
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what r tumor markers, i didn't know i they did that with TN...
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LauraJane: Praise be! Yahoo!
susan
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That's fantastic news, laurajane!!
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SO many posts to keep up with!
LauraJane-I am so happy for you! I also do not like the "oh, just be positive" comments. Being positive is not going to change the results of our scans! So happy your that your recurrence is local. I can't believe your doc said one year at best! Are you seeing a different doctor now?
I also get extremely scared and disfunctional before scans! I am still doing chemo, but get scanned to see if it is working. Last week before my scan I literally had a meltdown at work. I think my co workers thought I was crazy! ANd I basically was!
Mity-Wow! 200 miles! That is great! I couldn't even imagine...
Sylvia-I was shocked when my doc mentioned hormonal treatment for me at 3% er positive. Have you seen any studies that say we shouldn't take it? I will definitely get another opinion, but what if it is split? Then what do I do? I'm going to try not to worry about it until after my bmx, with that pathology report, because who know what the results will be.
Oh, I was extremely tired, depressed and stressed before being diagnosed. I had a cold almost all winter, but so did my hubby. I knew my immune system was low. Although I was just getting back to planning for my future, after being cancer free for 8 years after my first diagnoses. Now my husband keeps talking about our future plans to add on to our house, me continuing school for a career change at 44, and retirement. It just makes me so sad to think about, that I may not be able to do all of those things. Or maybe I will. But having cancer definitely make you think differently about your future, kinda in the "what I want right now and what I can do now" phase. This time I do not want to spend so much time worrying about the "what ifs" but how do we do that? Do I continue school or just continue with my current job/career?
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Laura Jane great news. Thinking good thoughts for you.
Went to chemo Friday and the onc was away and didn't call in the chagne orders and I had to go home...so stressful ...I had been in the hospital with neutrapenia and mouth ulcers after my first TC.
It takes a lot to gear up for something after being so sick and I found it very hard to get ready but thank God I asked what the change dose was although I already had needle in arm and was ready to go. the nurse stopped and didn't have any idea what I was talking about. They sent me home to wait for the oncologists return from vacation today. I wrote a direct respectful letter indicating there could have been a medication error if I hadn't spoken up and ending with
" I feel that I have not been treated with the diligence or attention that I believe is
appropriate for a treatment of this complexity and hope to discuss this with
you Monday."She wrote right back accepting total ownership and apologizing profusely . We talked at length today and I explained the myriad of ways it impacts my schedule. She immediately changed the next chemo so my sister who is driving 9 hours ot be with me for chemo will be there- the new schedule changed it to the day she was leaving at 1:00PM. She said she felt that I had been through so much she could not believe she had left me without the orders and that she would work extra dillegently to insure we had a good plan in place. I felt heard. I felt acknowledged but I do feel exhausted- some emotionally some the chemo. She reduced my TC to 75% based on all my symptoms. I still have small mouth ulcers so I am on diflucan and a steroid paste for the ulcers. I don't want to go through another 10 days of eating only icy liquids. I will also go in for fluids Friday as a precaution and neulasta tomorrow as expected. Is it claritan people take before the neulasta shot?
So, round 2 is done and I have 2 more rounds before radiation. This disease sucks. Maybe the treatment sucks. Having triple negative is not a good thing but I plan to grow old so I will do what I need to and advocate for myself. I am surrised by the intensity of my SE's...something about my bone marrow not being able to process the amount of chemo I am getting.....
Well I hope I can sleep tonight. Anxiety seems to take hold when I am on steroids.
Well wishes to all.
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bak94 Don't know what to say...it must have stung like a bee to find a new reoccurence. It is so hard to live in the moment when fear tries to take hold. I am so sorry but I know there are great treatments out there and we will all get them.
My best to you. Hubby may need to dream to feel he is in control.
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Hey moe! Missed you girl!
I read on another thread that there was this "study" that taller women get BC..it's a fun thread to read ..especially if you like sarcasm (and I do)...
Anyway..I'm 5'5"...I think MBJ is close to 6 ft...where are you MBJ??? ..As some of the women stated that they can't believe there was $$ spent on this kind of study...
When I run 5K's I want to know exactly where my $$ is going..last one was for triple negatives...I would have run forever if that would help find a cure for us...
Interesting about the Herceptin..I was 2-3%...I'm going to talk to my Onc tomorrow at my appt. to see what he says about it....I don't know though..that I'm willing to take more chemo at this point....it will be interesting to see what he has to say.
You ladies that are either a little Er or Pr +...what a dilemna..what do you do? My sister in law took tamoxifin...she absolutely hated it...joint aches and pains...she is now on Arimidex and doing better with it....I guess I would want to find out if it was truly a benefit...
Like Heidi said...when we are done with chemo..we are DONE....it's kinda scary at first but at the same time after I was done with chemo I decided that it was time to heal...to exercise, take my vitamins, and to try to get back to normal....it has been great to not deal with any SE's from any other type of drugs..and it has been great to have my body and mind to get back to normal also...
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Sisters, when I walked the 200 miles on the Camino de Santiago, I did it the same way we are all getting through our BC: one step, then another step, one step at a time, and each day thankful to get a little further down the road.
Susan
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Hello ladies. It has been a while since I posted. Sad to see so many newbies and the problems that some of you are having. But also a big congratulations to you all that are doing good and finishing treatment. MBJ I was reading you posstings about the body temps and I have the same issues with the low temp. I dont think mine ever gets above 97.5 (at least on my thermomitor) my doctor has never said anything about the low temp but my BP is always good. Who knows, just go with the flow I guess. I am starting to wonder if I will ever feel "normal" again or I guess this is just the new norm.. Mitymuffin - you are so right, one step at a time
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Mity..how long did it take to walk the 200 miles? How many miles per day? What fun..I would love to do that...
Hey JenC...welcome back..how are things with you?
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Laurajane: SO happy to hear your news! I think you made everyone's day here!
Regarding being tired/sick/stressed prior to dx. Yes. My stress started in 2006 with the death of my mother (petroleum truck hit her head on). It deepened greatly over 2007, 8, and 9. Consecutive deaths of two grandmothers, a 16 yr old family dog, a divorce, a birth, moving, job loss, daughter flipping car, and more. In '10, I honestly think I began giving up and became really sick. Then dx with this in September '10. I believe stress can be one of the big "helpers" of cancer.
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Mity: That's interesting to hear about your walk on the Camino de Santiago. I like the analogy of one step at a time. Many of my friends do the pilgrimage to Chimayo on Easter. I would like to hear how long it took you.
Laurajane: I hope you are feeling better tonight.
It's good to hear from some of you that have been away; I hope you are doing well, MBJ.
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I agree with the stress bit.. Before first Dx in 2006, I had a demanding mean boss and workload was heavy coupled with two young toddlers at home to take care of when I get back from work exhausted as DH was non existent because he didn't know how to handle plus a lousy relationship with exacting in laws etc etc. 2nd Dx, work was great but bitterness runs through me because of relationship problems with mum, DH and in laws. Looking back, I have been too stubborn, opinionated. This is a good awakening and after having reconciled with all, I am so much happier and relieved.
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Hi, I'm brand spankin new here and to cancer. I had a biopsy July 5th and had a lumpectomy on the 11th. I am diagnosed with triple neg breast cancer, grade 3, stage 2a. My little nasty friend was 2.3 cm. I will have muga scan this Friday and a port inserted next Monday. I will be starting ac for 8 weeks then taxol for another 8 followed by 6 weeks of radiation. I am 43 and scared to death!
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NotSoBusty,
I'm sorry you have to be here but you will most likely find this a great resource of information about TNBC, chemo, radiation, as well as a very supportive and fun group of women. I've "met" women on this board since February who I really admire. You must have had negative nodes?
I had TAC - if you have any questions about chemo or anything else, just let any of us know. I'm not finished with treatment yet but finished chemo 6/13. I can finally feel little hairs on my head.
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Thanks Christina. Yes, nodes neg. I am happy to find this place. I do have a "cancer mentor" and I find it very sad that I actually have So MANY within my peers. It is helpful though to look outside your flock for support. I hope to gain wisdom here to keep strong, hell I know I'm not alone! : )
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Hey NotSoBusty, I am brand spankin' new also. I had a biopsy July 22nd. My surgeon went on vacation for 2 weeks the day after my diagnosis. I have not had surgery or chemo yet and the big question is which one to do first. Any ideas or advice would be greatly appreciated!
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believe0831: Welcome! The decision on whether to do surgery or chemo first (neoadjuvant) depends a lot on the size of your tumor. Have you met with an oncologist yet?
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Those chemo mouth sores are the worse. I hated them! It made brushing so difficult.
Believe0831: It depends on the tumor size or your Dr. Either way the fact that it's being discussed is good. Your TX plan pretty much mirrors everyone else's. I had 6 round of TC (taxotere and cytoxin). I finished in Feb. and I feel pretty much like my old self again.
NotSoBusty: welcome and you will find great support from us all here.
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good morning girls and welcome to busty and believe....amazing how many new names appear every day, you will find great info and support here. Lynn18-what is the pilgimage walk in chimayo, is that in NM? I have heard of it, and I want to go there.
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Welcome to the newbies. Sorry you have to be here, but it's a great place for support. And notsobusty, that is the best screen name I've seen in a while lol!0
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Ah Luah. I read it as notsoBUSY. The actual name is so much better. Welcome newbies.
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