All Topics → Forum: Triple Negative → Topic: Calling all TNS
Posted on: May 1, 2010 11:59 PM, edited May 2, 2010 12:02 AM by Titan
Titan wrote:
I think that we tn's need to have a sign up list like some of the other threads have...maybe put your age, and also what treatment you have had or are now having.
What to do you think?
I can start: age 50, diagnosed at age 49 1/2, lumpectomy, 4 AC Dose dense (every two weeks) and 4 Taxol, Dose Dense every 2 weeks. 35 rads (including 7 boosts) mammogram every 6 months for 5 years (I think). see the onc every 3 months for 3 years, see the Bs every 6 months for 3 years (I think). see the rad onc 1 year after rads...probably won't see him any more after that...
I think this may be a good way to get all together...we can still have separate threads..but sometimes it would be nice to just go to one thread and have a cry or concern without worrying about not being on topic
What do you all think?
..
Posts 12391 - 12420 (21,200 total)
Mar 5, 2012 09:37 PM Titan wrote:
Ha ha Bak...we are lurking on you...can't let you go a day or two w/o hearing from you...lol..we are all really a bunch of worriers aren't we.
Take this as a note ladies..if you don't post...we will find you...lol
Mar 5, 2012 11:44 PM, edited Mar 5, 2012 11:45 PM by Cocker_Spaniel
Tifd - was wondering if you got the job you went for. Hope you get it.
Titan - another person going through this crap, your co worker. Will it ever stop. I believe estrogen positive is good. I wish I had been this when I was diagnosed. I might be wrong but I just think there are more doors open to this kind of cancer.
Maccrimmon - I'm so glad you enjoyed the pampering. I think we could all do with some of that to perk us up.
Bak94 - Really glad your rads are going well. Half way through, way to go.
Laurajane - Wishing you wonderful news from your bone scan. When I have had scans they all seem to have that deadpan face and won't say anything, mean bastards. I'm praying for an all clear for you.
HeidiToo - the Sounds of Spring were wonderful. I'm clinging onto the thought of spring at the moment and hopefully a better summer in NZ that what we had this year but its coming up winter and is getting very cold.
On the home front. My port went in good with no probs. Not even really sore. On the down side my hair has all come out. It wasn't very wonderful, very short, wavy with a nice golden colour but I liked it as it was mine so I will probably come back grey now, not sure I am ready for that yet even at 65. Second chemo tomorrow, so here we go again. The train just never stops it seems.
LJ, MBJ, Susan and Becca - praying you all had a good day today. Sending heaps of warm fuzzies and lots of smiles. xxooxx. Annie
Mar 5, 2012 11:48 PM, edited Mar 5, 2012 11:49 PM by NavyMom
ATeamNana....For sure I remember you!. We had a great time at the Weber grill. I would love to get together with you again this summer. Keep in touch and we can mark down a date when you will be up north.
Waving hello to everyone.
Mar 6, 2012 12:36 AM Lovelyface wrote:
Bak, very happy to hear from you and hear good stuff.
LJ - Good Luck on the bone scan, can't wait to hear good news.
Titan - Sorry to hear about your co-worker, you will probably have to go through this experience with her. But I am glad she has you, to support her.
Ladies, either I am super crazy or this menopause or chemopause is hitting me big time. Just now, yes, just now, I realized that I did not ask my Onc. about metformin at my last Friday's appointment. Can you believe this? Honestly, I think it is our chemistry or that I get too nervous, there is a lot to cover in one short appointment. This was my 3 month appointment. I can always make another appointment anytime I want, but honestly, I don't like going there too much. Right now, I can't think what or when I will go back to ask him for Metformin. I need to write things down next time.
Mar 6, 2012 10:15 AM, edited Mar 6, 2012 12:02 PM by Fighter_34
Good morning everyone. Titan so sorry to hear about your friend. Definitely news no one wants to hear. Just recently learned of a co-worker sister who is now one of the 1 in 8.
Mar 6, 2012 04:19 PM ksmatthews wrote:
Ok my onc agreed to let me do metformin, but today when I saw my BS he was kinda not so happy about it. Truthfully I love my BS and really trust him more. Now I am confused about what to do. He said it could have some serious side effects. I looked on internet and liver and kidney damage is 2 of them!!!
What to do????
Mar 6, 2012 05:53 PM Babs37 wrote:
I went for my mamogram 2 weeks ago and this morning got a call back and I have to go in for a breast US next wednesday. I'm trying not to freak out over this. I want to believe it's only because I have a dense spot on my remaining breast and they want to make sure it's not hiding anything suspicious. 
But tomorrow morning 10:00 it's my abdominal US to look at my liver and the "fatty liver spots".I am a little nervous and for once in my life I will be praying for a fatty liver!
Did someone say it today? No...... Then: I HATE CANCER!!!!!
Mar 6, 2012 06:26 PM Lovelyface wrote:
Hi Babs
I suggest don't freak out as it probably is benign. I went through the same exact experience very recently. They saw an enhancement on a bilat. MRI, and I had to get a biopsy, which turned out to be benign. You have a dense spot on your other breast, I have flat epethelial atypia in the other breast (which are pre pre pre pre cancer). But this time with the biopsy, my surgeon called to say that they didn't even find any atypia in the tissue sample. I also have been told in a prior ultrasound that I have fatty liver (not spots though), but in the petscan there was no uptake, thank God. I am glad they are checking you out so thoroughly but I have a feeling these are all benign. It seems like we both were diagnosed around the same time in 2010.
Mar 6, 2012 06:31 PM OBXK wrote:
Titan - your mom sounds like a hoot! With the all the odds you have against you, I'm glad they moved to your favor!
LJ - hope the old porch is off? I would have hated that clean-up, my stash sites have a crazy mix too. Hope the new recliner works out well. I live along a big river, there is a pound net set about a 100 yards away. I love to watch the Blue Herron, fighting over the fish, some kind soul seems to have rounded up for them. I'd hate to think of them spearing fish, in your koi pond! I'd love to have one too!
Annie- glad your port went in with no problems! At 50, for now, I have embraced my silver hair - bigger fish to fry and all that.
Time for dinner... Hugs and love all around!
Mar 6, 2012 06:36 PM bak94 wrote:
Babs, I hope time passes quickly for you so you don't have to worry very long! Hoping you get great news, which you probaby will, they are just extra cautious with us, but I know that does not make the waiting any easier.
I woke up late this morning, would have had to run out the door with out showering to make it to rads in time, plus it was snowing. Decided to call and ask for a later appointment, which they gave me. Went back to sleep, woke up again and it was a beautiful day, sunny, but cold! Went to my appointment, came home and as I was getting my keys out to open the door I hear my dogs just howling like mad! It was too funny. They were overly excited! The goaties were jumping around like it was spring time and the chickens were chatting loudly. I guess all the animals are very happy it is sunny! Plus I have flowers that came back, I think they are prim roses?! All different colors.
Mar 6, 2012 06:37 PM, edited Mar 6, 2012 06:39 PM by Babs37
Thanks lovelyface. I already had a liver scan last november and it came back clear but it mentionned something that "looked like fatty liver". So now I have to get that checked out tomorrow. Does fatty liver cause you pain in the liver sometimes? I asked for a scan because I had pain in my liver and since I am on the Metformin I wasn't sure if the pain was caused by the metformin or something else like mets. Guess I will know for sure tomorrow........
Mar 6, 2012 06:52 PM christina1961 wrote:
Babs,
According to this website, a fatty liver can cause pain:
www.liverfailuresymptoms.com/r...
Strangely enough, it also goes on to say that high levels of insulin can lead to fatty liver. It recommends a low glycemic diet (after mentioning all the foods I like best as the culprits in a high glycemic diet! )
I wonder how much all this chemo does to our livers. I had what I thought might be liver pain during the last of this clinical trial but the pain has moved around and is much better, gone at times. I have mentioned it to my oncologist but I am waiting to see if it goes away completely in the next few weeks. I never want to ignore something, but also don't want to have too many scans (I've already had 2 CT scans.) I hope all goes well and since metformin is known to cause GI upset, I'm hoping it is something simple like gas pains. It very well could be that as I have had those in the upper right quandrant before.
Mar 6, 2012 07:18 PM Babs37 wrote:
christina- I read that chemo can cause fatty liver. Since I've been in the Metformin trial, I have been having trouble with "on and off" liver pain, upset stomach and GI problems too. I was told that the GI stuff would be just for a couple of weeks until my body adjusted to the metformin but for me it never stopped and I've been on it since last april. I want to blame the Metformin for all of this but I wanted to be sure it wasn't something else so that's why I asked for a scan. And I want to be sure that the Metformin is not causing more problems then good. My clinical trial nurse said, last october when I saw her and told her about my symptoms that we would continue the dose (850mg X2 a day) for another 6 months and then re-evaluate the situation. I want a lower dosage, maybe 500mg X 2 a day would be enough for me. I just have the feeling it's just too much on my liver. I meet with her on the 21rst so we will see......................Mar 6, 2012 07:22 PM ksmatthews wrote:
Is the Metformin worth the side effects? My onc wrote me a script ,but I am nervous about taking it. She keeps telling me it is normally NOT for BC patients...Idk???
Mar 6, 2012 07:29 PM Babs37 wrote:
ks- Not everyone has SE that last. I think that Fighter34 has been taking Metformin and is doing just fine. Before taking it, just make sure your liver is ok. I had blood tests done before starting it and will have them every 6 months after.
Mar 6, 2012 08:31 PM Lovelyface wrote:
Babs, I have had a few very weird sensations in my liver but just a few times over the years. They were not pain, but something there was actually jumping, very strange. I was told I had a fatty liver way before the cancer diagnosis, therefore, in my case chemo did not cause it, maybe a high fat diet did. My doc. told me that a high percentage of Americans have fatty liver, it is very common. Maybe your pain is caused by a side effect of metformin. Since they specifically state that metformin's side effect is liver and kidney damage, we all need to be careful of the risks versus benefits.
Christina - I also don't want to have too many scans and try very hard to figure things out and heal them myself, either by discontinuing the drug or changing my diet. But when you have to have the tests, there is nothing we can do, right?
Mar 6, 2012 09:15 PM, edited Mar 6, 2012 09:22 PM by Titan
Another co-worker told me that the co-worker that was just diagnosed said that it really meant alot to talk to me...I had a great support person at work when I went through this and now it is my time to pay it back...it's not easy though..do you know what I mean..I'm living it all again..she is the same age as I was when diagnosed...and the same time of the year...well..I guess I will have to "woman" up and support her...I plan on hugging her every day...she will probably get sick of me..lol
Ah..the liver thing...take milk thistle...I've been taking it a couple of years now and it seems to help...of course, ask your dr's about it b-4 taking but my onc is okay with it.
Metformin...I want a prescription..I know that there maybe be some se's but maybe it wouldn't hurt to try it..you can always quit it...they have to tell you all the se's..maybe they won't happen to you...if we actually paid attention to all the se's from chemo and rads we probably would have gone screaming out the door...actually what Babs said...!
OBX..your hair came back silver..at age 50? I bet it is really pretty...
Annie...losing your hair sucks....it is gone but it will come back...sometimes when I'm doing my hair I look in the mirror and really can't remember being bald...total shock at first..but once I was used to it..it wasn't that big of a deal..I did wear a wig..a really cute one..but at home I was topless...the family got used to it...after the initial shock...it is what it is...we are fighting for our lives...and dang it ..bald is beautiful!
Mar 6, 2012 09:21 PM HeidiToo wrote:
All this talk about Metformin. I don't know. I think I am going to let well enough alone. Don't want to tax my liver any more than necessary. An absence of SEs doesn't necessarily mean it isn't having an impact on your liver, not to mention the possibility of GI upset. Sorry, I know I am being a poopy-head, peeing on the parade and all.
Mar 6, 2012 09:40 PM Titan wrote:
No poopy head for you Heidi...the er positives take Tamoxifin and there are plenty of se's with that also...My SIL took it for awhile and just couldn't stand it...too many se's for her...
I dunno..I think I would like to just try it...and see...if the se's were too much I would probably quit it....I want to LIVE while I'm alive...you know what I mean??
Mar 6, 2012 10:19 PM AimeeMac wrote:
I have not really posted on this site before, but I could sure use someone to talk with tonight. I am almost a year out of chemo (March 10th was last treatment), and finished radiation in May. When I first started radiation I had upper and mid back pains which I attributed to laying on that god-awful table. Even though the Rad said it was very unlikely to have a recurrence during radiation, I had a bone scan which came back clear. The pains went away for awhile, but recurred in January. I had an MRI, and the Dr. said no recurrence, but that I had some (and he later said severe) arthritis in my back. I have never had arthritis anywhere in my body. Every time this pain comes I am paralyzed with fear of recurrence. I should also mention that I travel for work, and am constantly lugging a suitcase and computer case around, so this could well be the case for the back pain. That and being on a plane every week and in a different hotel/type of bed every week. My Onc. is the super realistic straightforward glass half empty person. For example, she said she typically doesn't do blood screens on three month follow-up visit because "if it turns out positive it's then terminal and knowing earlier won't affect the survival time." So I am scared of knowing and equally scared of not knowing. Have any of you been there? I am so not ready to face the idea of recurrence or mets, because on my up days I want to believe I have beat this. I find that I can't move forward, and can't stop thinking about the what ifs, but at the same time if it is bad I am not ready to handle it. I can't really talk to family or friends or especially kids, because they want to believe it's all behind me - and I kind of want them to keep thinking this. Thank you for listening. It's hard being alone in a hotel room 3,000 miles from home without anyone to talk to, when I can't turn off my brain from going to dark places
Mar 6, 2012 10:42 PM HeidiToo wrote:
Aimee- Many in here have been where you are now. They will soon be along to give you more guidance and reassurance (I don't post that much "serious" stuff anymore).
I will say that, although difficult, you will learn how to manage your fears and get your life back to some semblance of normalcy.
Mar 7, 2012 12:21 AM, edited Mar 7, 2012 01:41 AM by OBXK
Aimee - I'm sorry you have such worry, and are away from home and your comforts. I think some stage IV ladies are going to disagree with your onco. I know it's hard not to borrow trouble, a week ago I was scouring the boards for bone met info! Had a bone scan - it came back clean.
Maybe a gentle stretching routine in the morning, hot bath at night will help relax your muscles?
Wishing you peaceful sleep, that restores your body. Karen
Mar 7, 2012 12:48 AM Lovelyface wrote:
Aimee - I have sent you a PM. My Onc. had said the same thing to me, which I was so shocked to hear. I am also having a neck and back pain right now. Our diagnosis and timing seems to be similar as well. I am sorry you are feeling lonely with all these thoughts in a hotel room so far away.
Karen - So happy to hear you had a clean bone scan, yeah! I wonder how did you handle the waiting for results period. I go out of my mind!.
When your doctors say such hopless things, how can a patient ever heal or move forward with their lives, even if it is a short one.
Mar 7, 2012 12:49 AM christina1961 wrote:
Aimee,
I look forward to hopefully hearing from some further along in this journey than us, as I was just diagnosed 2/11 and you just a few months before me. All I can say is that you are not alone in your thinking - I understand so well the fear of not knowing and the fear of knowing. I am a basket case when scans come along.
I believe chemo might aggravate tendencies toward arthritis. I hobble around like an ancient person when I first get up. Once I get moving around I'm ok, but I still feel much stiffer than before cancer. Some people here have told me it is from chemo and can take a year or more to go away.
Almost 30 years ago, I quit drinking. I was told to live one day at a time. I was also told that no one could live more than one day at a time even though we try by "projecting" into the future all the time. It was good advice and it helped me through some really tough times. I've started to use this tool again with some success with this fear of recurrence. All I can do is live this one day, hour by hour, the best I know how to do. Anyway, I hope this helps - and believe me, I don't profess to have the answers to totally conquering these fears, but going back to some of these simple practices that helped me so many years ago has helped me once again. Hope you stay in touch with us on this site!
Mar 7, 2012 07:12 AM AimeeMac wrote:
Thank you everyone for your kind thoughts. I am looking out from my hotel room in Virgina Beach at a beautiful sunrise (I live outside Seattle and am more used to sunsets). I will take your advice Christina and just focus on this day. When I feel the lowest is when I think about my kids and possibly missing their futures. I have a daughter just about to get engaged, and a son who is a few years behind her in that goal. I use the idea of wedding planning to take my mind off cancer, but then I worry if I will be there for the wedding, grandchildren etc. I'm sure most everyone on this site has similar thoughts.
Today I will be grateful for today and all the days before it, and try not to worry about tomorrow :)
Mar 7, 2012 08:21 AM mitymuffin wrote:
AimeeMac, Welcome. I understand and have shared your fears. I had back pains for three months before I could face a bone scan because I was so scared of the results.The bone scan showed only arthritis.
If your scan showed arthritis in January, the arthritis is not going to go away. This is one of those "horse or zebra" questions. You hear the clip clop coming down the path, and you are thinking zebra when logically its likely to be a horse. Our fears can grow very large. You know you have arthritis.
Like Christina said, live a day at a time, and enjoy that sunrise. Post again when you feel like it, or have questions or fears.
Mar 7, 2012 09:05 AM Fighter_34 wrote:
Ladies:
An update, I am starting to have hotflashes again. I do have my cycle back but it's not regular. So I am hoping and thinking maybe it's my cycle taking a break and the hotflashes return for SPRING/SUMMER.
Oh the joys....
Mar 7, 2012 09:09 AM Luah wrote:
Yup - what mity said - only she said it better than I ever could.
Mar 7, 2012 12:39 PM Lovelyface wrote:
Suze & MBJ - I am thinking about you both this morning. I am wondering how you are doing? Please write if you feel up to it. Suze, are you going to do any more treatments? MBJ - how is your strength building up? Are you able to type?
Mar 7, 2012 01:13 PM, edited Mar 7, 2012 01:16 PM by MicheleS
Heidi- you *are* a poopy-head. Glad you finally recognize that! 
Hi everyone! Hope you all have a great day!
xxoo
edited to add- regarding arthritis: never had it before, have it now. post-recon (and chemo). If you think abt it, our bodies are subjected to so much to fight bc. Including toxic chemicals and surgeries that completely mess with proper joint alignment. It is no wonder that all of us aren't bed-ridden!! With that said, I got bone scans as well when the pain popped up. my motto- "Trust, then verify"