Calling all TNs
Comments
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Phgraham I'm so sorry to hear your news. Yes cancer really does suck and sounds like the mammo's and ultrasounds do too by coming back inconclusive. You just kick this cancer to the kerb once and for all. Big, big hugs to you.
Karen my port was in my jugular too. Glad all went well and hopefully will stay well this time. Why do you think you have purpura, do you have a rash. Thank you for that lovely card you sent. Painting is so tallented isn't she. I just love coming home and finding your cards.
natL 12 so sorry to hear about your sister. One good thing is that you can advise her the best way forward. Hoping everything turns out fine for her. Big big hugs to you and her too.
Navymom how is your boy getting on. Have you heard from him lately?
Luv so sorry you are having a rough time with treatment but you will kick this and your trip away will give you something to look forward to.
Well ladies I am officially on a weeks holiday. Feels so good to take a small break. Weather is still good here nice and sunny but we have been declared a drought zone. Haven't had any rain for four months or not enough to speak of. Today I am going to tackle some serious cleaning, some things I have been putting off so I had better get cracking.
Luv and thoughts to you all. Have a great weekend. Annie.
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Oh my god, I am so glad my daughters never brought anything like this home!!
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Annie - I'll bet his mother never hugged him. Glad you liked your card. It made me happy to think a bit of you, Susan and I were all in the same room.
Phyllis - so sorry to hear about your news. No fair!!!!
NatL - I'm glad your sister has you to answer her questions. I just wish it were not so.
Fighter - I always seeing your lovely avatar. I hope you are doing well.
Feeling better today... Just a little sore.
Enjoy the weekend!0 -
Phgraham, so sorry for your news, cancer does suck! I'm sure you still have some fight left in you to kick this to the curb again!
HUGS!
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Stay strong Phgraham! You have the right attitude to beat this nasty beast again! So very sorry you have to go thru it again - it's not fair - it sucks!
I just finished Rads last week and felt all kinds of lumps and bumps in the radiated breast too. The RO checked and said its very common and he's never heard of recurrence happening during treatment.
Will need to continue to do self exams since this seems to be the only way it's identified in my lumpy breasts.
Welcome to the new gals, sorry you have to join us. Ask any questions, we have all been thru it and are here to help!0 -
wanted to take a moment to remember our dear tn friends who we lost one year ago this month...love you and miss you Laura Jane, Suze, Mary. ...miss you guys so much it hurts.
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Thank you Titan. I often think of the girls especially if I go back for some reason and catch one of their posts. They were so alive in nature, so caring and supportive. It's hard to believe they are gone from our lives. I hope they are all happy in heaven and having the time of their lives with no more fear of cancer. RIP dear friends. xx xx xx
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I miss our dear ladies as well. Sending love to Laura Jane, Suze and Mary in Heaven.
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Feels right to remember LJ, Suze and Mary at this time. I know many of us like to feel positive and say stuff like you'll be fine, but reality is, some of us will not be fine. While I am optimistic, I am also a realist and do not stick my head in the sand.
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Thank you Titan. That was such a difficult time. I too, come across their old posts when I am researching something. It's like a stab in the heart.
My one good thing today...
It was a beautiful, sunny day and I took Augie for a little walk.
Wishing everyone the best day possible.0 -
Well ladies today was another beauty. Long may it last although everywhere you look there is nothing but dried up grass and even the trees have lost their lustre. I cleaned all day, everything in sight and it was wonderful but boy was it hot. I had to keep taking little breaks to cool down as my hair was ringing wet. I notice your clocks are going forward so you will all be getting ready for spring where as I will be looking forward to the fall and dare I say it a cold snowy w......
Its so lovely to have a little lie in, in the mornings but I did put Tessa and Chloe out a bit as they have their own routine. Eat, sleep, sleep and more sleep until I come home at lunchtime. I bought a new coffee table at the weekend. Its got a stainless steel base and stand and thick plate glass on the top, very very nice but I defy Chloe to get her teeth into that glass!!
Hope everyone on chemo or rads is having very minor side effects and big hugs to all. Annie
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Deer Son,
I am writing this slow because I know you can't read too fast. We don't live where we did when you left. Your Dad read in the paper that most car accidents happened within twenty mile of home, so we moved.
I can't send you the address as the last Newfie family that lived here took the numbers with them for their next house so they wouldn't have to change their address.
This place has a washing machine, but the first day I put four shirts in it, pulled the chain and haven't seen them since.
It rained only twice last week - three days the first time and four days the second.
About the coat you wanted me to send you. Aunt Sue said it would be a little too heavy to send in the mail with them heavy buttons, so we cut them off and put them in the pockets.
We got a bill from the funeral home and it said that if we didn't make the last payment on Grandma's funeral, up she comes.
About your sister - she had a baby this morning. I haven't found out whether it's a boy or a girl, so I don't know if you are an aunt or an uncle.
Your Uncle John fell in the whiskey vat. Some men tried to pull him out, but he bravely fought them off and drowned. We cremated him and he burned for three days.
Three of your friends went off the bridge in their pick-up. One was driving and the other two were in the back. The driver got out - he rolled down the window and swam to safety. The other two drowned - they couldn't get the tailgate open.
Aunt Mabel is knitting you some socks. She would have sent them by now, but I told her that you had grown another foot since she last saw you, so she has to knit another one.
Not much more news this time. Nothing much has happened.
Love,
Mom0 -
Also thinking about all the ladies lost last year at this time. That was when I first started with these boards and I will never forget how hard it was too see this disease take so many. Prayers for their families and friends on this anniversary :-(
On another note. Went for 3 month followup with mo feb 20. She did bloods. CBC came right back while I was there and she said all looked great. Full counts took a couple days and she said she would call if anything out if ordinary. Never heard anything. This bloodwork was forwarde to my PS and general practitioner for medical clearance for exchange surgery next week. Just got back from dr for medical clearance exam and he mentioned sugar was slightly high at 111 but asked if I fasted and I said no so he said that was fine then. But then said my liver function was 32 last yr when he did bloods before my mx and now they are 37. He said that is really nothing to worry about cause most labs either say high range is over 40 or even sometimes 50 in some labs. But who's he kidding. We now worry about everything!! Ugh. Now I just put a phone call in to mo to see what she says. Anyone have any input?? I am of course worrying now :-(
Melissa0 -
Good one DorMac
Hugs everyone.
Beautiful sunny day here again - hope its here to stay.
Remembering the Sisters who have passed away. Thoughts with their families.
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That sounds like such a small variation from 32 to 37. I think if you hadn't fasted, then that's probably what the difference is, especially if you fasted for the exact same test last year. My Onc looks for a pattern of continuance, rather than a one time fluctuation. Also, were your labs done last year before mx, but after chemo? Because after chemo, it can time for things to appear normal.
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Geez inspirad I hope you are right because my CA153 three months ago was 51 and this new result is 60. It's really frecking me out. I wish to god it would go down.
Annie
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Hi Cocker!
When I responded to Melissa that it didn't seem like much of a difference, that was because her ranges were still below the considered 'high range' according to her post, and I thought liver and kidney values can fluctuate somewhat without alarm. With tumor markers, I've also heard that they look for trends, but I don't know how much of a variation they allow for a tumor marker either. I think your Oncologist will tell you when it's time to worry a little. Did he offer any information besides the number?
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Ok...I'm a dummy..what is a CA153? Some kind of a tumor marker? Should I be having this as well?
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To all triple negatives - I just read on another post that few triple negatives ever have a lumpectomy - this is news to me - now I am concerned because I had a lumpectomy and it was never suggested to me that I have a mastectomy.
I'd like to know how many women have had a lumpectomy? Feedback would be appreciated!!
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Hey ladies. Im 27yrs old and was diagnosed on jan 23 with Idc grade 3 stage 1... I had a bilateral mastectomy on the 1st of this month. I've understood everything pretty well up until this point....I had my first post op appointment with my bs today and was told that my lymph nodes were clear which os a good thing, but my tumor was triple negative for hormone receptors. I think I was going to have to recive chemo treatments no matter what due to my age, but I was kinda holding out hope the might just be able to skip chemo and start hormone treatments..but since I'm TN, does this mean I will need chemo for sure? And what types and how many treatments would you ladies think I'd need?? I had an appointment with an oncologist on Thursday but I try to find out most of everything before seek f the drs so I know what do expect In a way
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I saw that other post, and I believe many were posting in reply to that, asking for additional information or a retraction, as they felt it was not the case. On these boards, I think it's split pretty evenly, lx and mastectomy. I seem to run across many profiles and it seems to be about the same.
I had a BMX. My BS basically said that most women have an idea what they want before they even see him, and I told him I wanted a BMX, and I talked to him about why I wanted to do that. At the meeting we did not know I was Triple Negative yet.
It's stressful to wonder if we got the right treatment, the strongest treatment, etc. Just remember, your medical teams knows all about you, your pathology report and I'm sure they gave you the recommended protocol for your situation.
Hope this helps!
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Inspired.... He did say not to worry cause the increase was so slight. And last time he did labs was before chemo and this one was 3 months after treatment. But I did hear back from my mo nurse. She said my one liver enzyme did increase slightly but all other, apparantly three other indicators were the same so they look for everything to go up to further cause concern. And increase to them would be to double or triple not only 4 units so I guess I feel better now. Ok. Next hurdle is exchange surgery next Tuesday.
Thanks again!
Melissa0 -
That's great news! I have surgery on Wednesday. I have saline implants, but they rotated around, so he is putting in new ones for me and cleaning up scar tissue.
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Hi Keke, my Bs told me I didn't have a choice and because I was TN, then I would have to have chemo. It's the only treatment besides surgery. No hormone treatments work on TN. I had chemo first. 4 weeks of AC and four weeks of taxol. Then I had a double masectomy. My mom and sister both had breast cancer, not TN, so I wasn't taking any chances. Because I had a BMX, I did not have radiation. Your BS and onc will know what to do and will work together with you to come up with the right plan for you! Good luck to you and so sorry your having to go through this! Not fair!
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Hope: It is a breast cancer tumor marker. Some Oncologists do them, some don't, because of the false positives and having to put the patient through the anguish of waiting. Some feel that if something is wrong, it will hit other labs as well, without having to look at a specific tumor marker. Some women have recurrences, with normal markers, and some have elevated markers with no recurrence.
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Thanks Inspired...I'm just not going to worry about it (too much). I will have my three month check ups and just go on with my life. If something is out of the ordinary, then I will be alerted whether its bloodwork or my body talking to me. I just need to remain positive and try to be more healthy. It's all I can do! I'm just so thankful for all of you by my side!
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Adagio, I posted on that thread also. There are tons of us who have had lumpectomies. I found Alny's comments unacceptable. For those who haven't seen it, she said TNs never had lumpectomies. Luah and I both called her on this. Adagio, your reaction to her comments are what I find so worrying, because YOU are now concerned you didn't get the right treatment. You did get appropriate treatment.
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Hope, does it matter the order? Will they still make me do chemo even after I've had my mastectomy? I had my bilateral mastectomy on the 1st..I notice you said you had your chemo before yor surgery. I know your not a doctor but I'm hair trying to prepare myself for whatever plan they will have for me on Thursday..thank you! And how well did you take the chemo treatments? How did you feel?
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Keke - welcome! I am so sorry you have to join the club - but we'll all be here for you for advice, hand holding or just listening to you vent in a safe place.
It seems the current protocol is as explained to you above. 4 rounds of A/C combo then 4 rounds of taxol or taxotere. I am not sure how they are space out, but it may be every 21 days. 24 hours after treatment, you may have a Neulasta shot, which helps keep your white blood cell count up.
Some doctors do surgery before chemo and some do it after, so they can scan you to see if the tumor had a good response.
I think there is a page on this site, that yells you about all the chemo drugs. You may find that helpful.
If you have any questions just ask, and once you start chemo you may want to join another thread that will match you up with women starting chemo on the same month.
Wishing you all the best.
Annie - so glad you were able to rest and get some things done around the house. Sure hope dear, sweet Chloe doesn't find a way to sink her teeth into the new table.0 -
Adagio, I had LX. I was told "cure " rate was the same either way if I also had radiation. However we did not know I was TN at the time. I don't know if that would have changed their recommendation but I might have considered a MX a little more.
Keke, so sorry about your diagnosis. I was told small lump, no nodes -- surgery, rads, and possibly pill for 5 years. It was a shock to find a week after surgery that the node they took was positive and then a week later to learn that I was TN -- and life changed. Now I felt sick. Now I had to have chemo. Now I would lose my hair. Now I really had cancer. Thank God, there are a lot of warriors here that are helping me through this fight and we are here for you too. I was told i would feel bettrt once I had seen the oncologist and had a plan in place, and that was true. God bless you0
