Calling all TNs
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Inmate, happy news! Congratulations and have fun with the rest of your life.
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Inmate, happy news! Congratulations and have fun with the rest of your life.0
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Inmate, happy news! Congratulations and have fun with the rest of your life.0
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Thanks friends for your well wishes. The chest tube came out yesterday (a BIG ouch). I had another x-ray today and my lung is staying inflated so I have been given the OK by my BS. Now, I have to find out from my onc when I will have my echocardiagram and start chemo. I was supposed to start last Monday before I found out that the port placement caused my lung collapse.
It is good to read how good most are doing.
KS- so sorry about your friend. How hard to deal with that on top of your own BC. Take care of yourself.
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Cat,
Glad to hear the lung is staying inflated. Did they replace the port? I was so glad to have mine but did not have the horrible experience you did. If you still have it, I think you will appreciate it when it is working like it is supposed to!!
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Ugg, My line of events-bmx, which somehow I get a staph infection, hospital for 4 days, taking antibiotics for staph infection causes c-dif, made me very miserable, antibiotics for c-dif cause a yeast infection which continues to make me miserable! I know in the world of cancer these things are very minor, but I am tired of being miserable! Meanwhile radiation is being postponed. Not a happy camper. One of these days I will come to these boards and not whine, but that is not today. Hubby and I did have a good day today, went shopping and then to the casino (I know, bad, very bad) But we walked out with the same amount of money as we went in with, he won and I lost so we were even!!
CatW- that is horrible that happened with your port. Sounds like you are on the road to recovery! What chemo are you doing? I agree with husker, you will appreciate the port. 9 years ago I went through chemo without a port. It wasn't too bad until I was done and had to have follow up blood draws, my veins are shot, and I had a crazy amount of lymph nodes removed on the other side. I wanted to keep my port this time, but it got infected just after I finished chemo so it had to come out. So now how do I have blood drawn? I now have had lymph nodes taken out of both sides! I had to have an IV in the hospital on my arm, no LE yet....
I get upset every time I see new members, can this cancer crap just stop?
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bak94, sorry you are miserable and going through so much. Hope you feel really better soon!
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New to the board -- Diagnosed at 43 yrs old with stage 3c TNBC. No family history, Only found out about it after pain in the arm pit. Initially misdiagnosed. Extensive lymphnode involvement, even subclavicular. Had 4 rounds of AC, then 4 rounds of Taxol. Lost all of my hair, eyebrows, eyelashes and my nails were shot. I then had a double mastectomy, they took 10 lymphnodes. Path found evidence of cancer cells in 7 but the tumor had infiltrated the blood vessels. With the surgery I added expanders and quickly tried to fill between recovery from surgery and start of radiation. Then I did 33 treatments of radiation that ended in November 2011. The scan that was done between chemo and surgery showed no cancer. I am now in the post treatment phase, going to PT to gain flexibility and reduce the possiblility of lymphedema and wondering where all this curly hair came from. I am definitely struggling with the cognitive changes post treatment and the stress of waiting for my first post treatment scan scheduled for Feburary. The final reconstructive surgery is scheduled for April and I am debating doing surgery to remove my ovaries due to a family history of this cancer.
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Bak, You are not whining!! I am so sorry you are going through all that! I think you are being a trooper.
Whitedog, I'm sorry you have to join us - I am debating the ovary removal, too. It sounds like you are being very proactive with the PT and all! I have cognitive issues, too - but still on chemo - my spelling, which used to be pretty good, has become terrible. I arbitrarily exchange words, too - I have to proofread my work all the time. It isn't something that spellcheck catches, so it is a real problem! Did you have a complete response to chemo?
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Susan, If you are out there "lurking" - just want to let you know that I'm thinking of you and hoping you are starting to feel better.
Love,
Christina
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whitedog so sorry you have to be hear, but sounds like all is going well for you now. Good luck in the healing process.
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Another member for the group - diagnosed in October 2011 at age 54 after mammo, MRI, biopsy, PET scan -- huge family history of reproductive cancer on father's side which I have told every MD I've seen (always told, don't worry, it's the maternal side that matters -- HA!) -- BMX 11/16/11 showed expected 1.3cm in right breast and pre-cancer in left breast -- immediate DIEP reconstruction with many hurdles to overcome (last drain not removed until 12/17/11). All nodes negative. Oncotype done despite TN showed score of 52 with 34% recurrence rate. Will need Fallopian tubes & ovaries removed once chemo is complete since BRCA1+.
Began TCx6 on 1/6/12. Other that tiredness, only se has been extreme bone pain (from the nuelasta, I understand) relieved by claritin suggested in the Jan 12 chemo thread (thanks be to God, since my MO had no idea how to help except nartcotics!)
I think it is so important to hear the positive stories out there -- and to support each other in the not-so-positive ones. Count me in for the long count, ladies.
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Tina: so sorry you are having a rough start to this whole ridiculous process. I sure hope things get smoother and you breeze through the rest.
Michelle: Congratulations! I can't wait until I can finally say that too. So doing the happy dance for you!!
BAK: OMG! So glad you are doing better, but man, oh man! Sure hope you can get completely well soon so you can finally get on and done with your rads! HUGs!!
Inmate: Doing the happy dance for you too! I sure hope your next 20 months are just peaches and cream easy!
Whitedog and Joyce: Welcome to a really great and supportive group: lots of knowledge, patience and experience here. On the Claritin, Joyce, my Onc said the study that showed it was effective was when it was taken once daily with an Aleve (naproxen sodium-generic).
Suze: So incredibly glad you are home
Doing the happy dance for all the good news!
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Hey ladies,
It's actually my mom that's been diagnosed with stage 2A Grade 3 TNBC. She had only one node removed, which was enlarged (possibly from the biopsy), but negative. She had a left MX, which went extremely well with incredibly great margins (ranged from 1-2 cm).
Unfortunately, as you all know (since I'm posting on this page), the path report determined that her tumor was triple negative. Though the cancer was caught relatively early and there is no node involvement, this diagnosis was a bit of a slap in the face considering how easily we thought surgery had taken care of it.
So many of your stories are giving me hope, though, and I'm wondering if any of you have some tips on staying positive? She just started chemo on Tuesday, and surprisingly has shown no negative symptoms from it She's doing A/C once every 2 weeks for 8 weeks (4 total) and then T once a week for 12 weeks, but no radiation. I noticed a lot of you had radiation though? What was the main reason the dr's wanted to do radiation?
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Linds,
So sorry about our mom. Since she had a MX and no node involvement, there really isn't anything to radiate. Usually that is only done if there is a lumpectomy to kill off anything left in the breast or if there is node involvement to kill off anything in the nodes. I'm really glad for your mom that there was neither.
As for staying positive, I think the only thing you can do is to stay informed. First of all, it sounds like they got it real early. Second, even though the chance of recurrence is higher for TN, it is still significantly low for early stages. I'm sure if you look on lifemath.net or one of those you will find it is close to 80% chance of survival or so, but I am not sure so you may want to look or ask the doctor. Anyway,when I start hearing all the negative, I do find the positive numbers instead and try to focus on them. It gives me confidence too when I hear all the ladies that come on 3, 5 and 10 years out.
(((HUGS))) and hang in there. Give your mom a hug too.
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Thank you
The information about radiation was really helpful. I appreciate all your advice so much! Best of luck to you in all your treatments. I know every woman here not only has the power of medicine behind them, but also the powers of information and support. Love to all of you, hang in there!0 -
Thank you everyone for the welcome. Christina, we saw nothing on the PET post chemo, however I am really nervous about the first scan since it was so advanced before I got a diagnosis. My commuication skills have totally suffered - spelling, speaking, writing. I was referred to an OT that is trying to help me work through these issues. I cant say enough about the comprehensive breast cancer program we have here -- they have thought of everything! I would have never known about any of the peripherial isses unless the program had incorporated it.
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Whitedog and Joyce - Sorry you have to be here....sorry we all do...but welcome. You will find a lot of information and support on this board.
Joyce, I totally understand your anxiety over your upcoming scan....I think we gave all experienced that....wonder if it ever ends!
As for cognitive issues.....I had chemo-radiation brain for quite a while after treatment. Had memory problems, trouble concentrating and difficulty finding words. Happy to report that most of that is gone, but it took a good 6 months at least.
Best to all.
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Husker and Bak - I do have the port in place and it is still tender. I am going to be having DD - 8 AC every 2 wks and then 8 Taxol every two weeks. I am sure hoping that the port is worth everything I've gone through which I did because I have very few and small veins that the nurses said would probably only last maybe a couple of treatments. I was trying to be proactive by getting the port. I actually still have a huge hematoma still from my lumpectomy on 12/7 so my whole chest seems like a battle zone.
Bak - I am right there with you in the whining.... Hope you are doing better.
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Bak...my dh and I went to a casino this weekend also...the only thing is..I lost and so did he..I told him that YOUR dh won...told him he better amp up his game
Well to the new ladies here...my name is Joyce too!
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Cat, I think in spite of all the pain and suffering you will appreciate the port. One thing that helped me was getting a numbing cream (requires Rx). Ask your onc nurse before you go for first chemo. You put it on about an hour before your treatment and then cover it...some use saran wrap but I found it easier to use a non-stick square Band-Aid. Let me know if you want more info and I can get the specific name of cream and bandage...both of which escape me at the moment! Infusions aren't painful (normally) but you will be tender. I had my infusion 3 days after my port was placed. It was a bit sore but not terribly so.
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Bak - don't worry about whining here, whine all you want, my friend. Don't you worry about such small things, pour your heart out here, this is the place. I am with you all the way, my dear!
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Linds2013 - welcome to you and your mom (although it sucks that you need to be here). Her diagnosis/treatment sound similar to mine. I had a lumpectomy first - didn't know I was TN until after pathology report came back. I had the genetic test done for the BRCA gene mutations and will get my results on Thurs. My RO said that if I have the double mastectomy, then there won't be anything to radiate because of no node involvement. I'm not sure which I want more -- no boobs or radiated ones!0
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Husker - I was wrong, I am having 4 AC and 4 Taxol every 2 weeks for 8 cycles (16 weeks total). I did get a prescription numbing ointment to put on my port site before infusion. It says to put on only 30 minutes before stick, but the literature says 1-2 hours before. Since locals (which is lidicaine) don't work for me, I am thinking I should start putting it on 2 hours before. How much do you use and how much of an area do you put in on? Just where you get the stick, or do you also numb the catheter and vein? I know some medicines sting the veins like heck, so just wondering if anyone could share their experience with the numbing. Do they also do the blood draws in your port? Any problems with that?0
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Suze- Thinking (and worrying) about you. Just hope you are feeling better. Big Hugs.
Laurajane- Same thing. Hope you are doing fine this week too. Hugs.
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Isabelle, I'm here, just lurking. I'm still really weak, so it takes a lot out of me just getting downstairs each morning. But I'm making progress slowly. I have to be ready for our Florida trip and Disney cruise in 3 weeks!! Thank you for thinking of me.
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Susan,
I hope you continue to feel better.
Tina, I used to get my port numbed each time but now I just take a deep breath when they access it. I have my blood drawn there, too, without any problem- and I just have a regular port not the fancy new ones. I'm glad to have it after they stuck me six times before my MRI last February.
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Susan, thank-you for the news. I was getting worried about you but I understand completely that you need to rest and get better. Take good care and know that we are all here for you, good or bad. And visualise that Disney vacation!!!
Isabelle xx
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I never used a numbing cream when my port was accessed. My chemo nurse was a genius at painlessly inserting the needle.
Suze - wishing you strength and healing!
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On the port thing, I sooo regret not being offered to put one in before I started chemo. I had 4 AC and 12 weekly Taxol almost all in my right hand. They thought I had good veins in that hand so they prefered that one. Now, even 1 year after, my veins on that side are shot! I have a feeling it is affecting my circulation in my arm and hand and I think it's not helping with my LE. If I had knowed back then what I know now, I would have asked for a port.
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