Calling all TNs
Comments
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Thankyou for the welcome ladies
Karen & Beckie......thankyou for the info on the SE's. dreading starting chemo.....still have very clear memories of how crap I felt last time! I feel so well now except for the pain that I can take medication for. Karen, I'm doing the same cycle as you did......one free week .....yay! I worked through chemo first time round but retired when my mets were diagnosed so hopefully that'll make it all a bit easier.
Luv....I've read a lot of your posts & I think you're one strong & amazing lady
I wish you all the best & hope you have a blast in Vegas....I'm from Australia but went there with my family in February this year.....we had a lot of fun
I get my port put in on Wednesday.....haven't had one before so feel a bit nervous about it!!
Take care everyone.
Karen x -
Surgeon said i will need a port as well. I am so grateful for you guys already! Tuesday I'll find out my treatment plan. I hope so. I was diagnosed November 2! Feels like its taking too long! That must sound a little silly but i feel like the beast is growing!!
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Luv, have a wonderful time in Vegas - the hot air balloon, and scattering your Mom's ashes sounds like a lovely thing. Sorry about the hair, glad you got some fun wigs - work it!
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Hello to all our new sisters here. Chemo is scary but you can do it. I had Dose Dense Taxol then Ac each 4times. Taxol= body pain for me and Ac= nausea. All only for a few days after each treatment. You will see what works for you as far as handling whatever SE's come your way. Epsom salts baths helped me with pain and took my meds before the nausea would get the best of me. Been done with chemo for 11 months now and am needing to have my hair cut soon. It is out of control...short but wild!
Healing well from my diep 3 weeks ago and my failed flap removal 2 weeks ago. Good boobie is looking fantastic. So paranoid that she is going to decide to leave me too. But so far so good. Getting stronger everyday--only 1 drain left and pretty sure it is coming out tomorrow.
Luv have the best time in vegas--you deserve it.
Maggie
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To all the new ladies. Rest, rest and rest again. Please accept any offers of help and support.
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To all new Sisters in our forum - here are some tips on chemo.
Of course, ask your Onc about anything medical here, but in general, this is what I was told and what I did to get through chemo:
Tip #1: When you go through chemo, don't try to be Wonder Woman. This was the time my Onc pulled my husband aside and told him to make sure I don't keep trying to break records. He really emphasized letting the treatment do it's thing. So what he told me was: "if you feel great, then do it, but the moment you feel tired, sit and take rest, don't keep trying to continue". This was the first time I followed instructions in my life. lol
Tip #2: Also, don't be too hard on yourself with regards to etiquette. Example: You receive a nice card and gift from a relative. Don't feel that you have to stop what you are doing to send back a thank you card. You have something important to handle first - your treatment! I actually used this Thanksgiving to send thank you cards and pink ribbon pins to everyone who I still had not thanked yet, and I finished treatment in April. Of course, they have all heard from me and had my updates and a thank you, but for a formal thank you, those came later, when I felt ready to send a heartfelt thank you.
Tip #3: And also, put yourself first and treat yourself to something. Pedicure, new DVD of MadMen Season 5 or big fluffy robe. Whatever it is, get yourself a treat right before each chemo treatment. Also, I took my own blanket with me each treatment, and I found twin blankets at Target for only $9.99. They were awesome, and just the right thing to feel cozy during treatment! Note: If you get a pedicure do not shave your legs the day of the pedicure. You could have non-visible nicks on the skin that could let germs in. Instead shave your legs well in advance, like a day or two before, so the skin barrier is closed.
Tip #4: If you need, institute a DNS. We did this and it tremendously helped us cut down on the commotion of things, but still provided updates. A DNS is a Delayed Notification System to anyone, who checks in too often or who causes a panic with the wrong choice of words. This was created after we told one family member that we had a doctor's appointment on a certain date/time. We weren't even home yet from the appointment, and had a call on our cell phone that said "we haven't heard from you yet, hope all is okay". It is of course with nice intentions, but it would stress me out during these times. For one, I didn't want someone to feel that we hadn't updated them yet, and two, my DH and I wanted time to talk and absorb the details. So what we started doing, was telling a few individuals my appointment was a week later than it actually was. That way we had time to talk, absorb, plan and had better answers for them.
Tip #5: Most important thing during chemo (according to my Onc) is water. You must flush the toxins out the first 48 hours. This is so it does not linger around organs causing long-term damage and side effects. He recommended 64 ounces minimum. If you need help, you can get the Pediolyte Freezer Pops. They are flavored and have electrolytes in them and will help with fluids. He also said Gatorade was okay too.
Tip #6: Eating healthy is very beneficial, but if nothing tastes good the first couple of days each treatment, eat something, even if it's not perfect. Remember it is really about getting rid of toxins, while keeping energy up. So if a cheese enchilada or chicken fajitas is what you crave, then that is okay.
Pink Ribbon Pins - I sent these as thank yous!
Here are 2 links to 2 pretty pink ribbon pins I ordered from Amazon. I'm going to be ordering more of the crystal ones. The picture does not do this pin justice. The crystals came out so clear and pretty, that frankly, I think they could charge a lot more for this pin. They are nice and we are sending out more with holiday cards this year. I researched a lot of them on Amazon and some were made with suspicious metals, etc. These are 2 that I found both acceptable and pretty!
Pink Ribbon Pins:
http://www.amazon.com/Austrian-Rhinestone-Ribbon-Awareness-Silver-Tone/dp/B0025UW9KW $9.99
http://www.amazon.com/Pin-Breast-Cancer-Awareness-Ribbon/dp/B002EKSCGI $3.99
Wishing all of you a great week and successful treatment!
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Hi everyone:
Inspired: have you heard how pink power's surgery went? I read her blog...what a story!
Good chemo tips! I also find that drinking tons of water really really helps.
Luv: how awesome what you Are doing with your moms ashes and in a hot air balloon!
I too read your blog. You are such an inspiration!
Nanc620: welcome to our group. Sounds like you have amazing support and a strong positive attitude which is half the battle. You will also receive that amazing support here as well. No one gets it except you wonderful ladies
Kazzie and Hope: for me, getting the port put in was no big deal. I do remember singing with my surgeon the whole time.
Mags: so glad you are feeling better.
Like Bernie says, rest rest and rest some more! Take care,
Erin -
Inspired.....that is all fabulous advice, thankyou ( even though I've had chemo before it was still informative & appreciated)...:)
Erin....thanks for the reassurance re the port I'm having a general anesthetic......seems to be the norm over here in The Land of Oz....still feel a bit nervous though..:)
Hope everyone is enjoying the weekend.
Karen x -
Nance620 - welcome! I'm glad you have a good team in place. This is a wonderful thread, lots of love and laughter. Best part - no drama!
Wishing you well ... -
Hopex3 - I have not heard from PinkPower -- I sent her a PM just now letting her know that we were all thinking of her!
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Thanks for the thoughts on the 401K, ladies. I'm not going to do anything until after the new year for tax reasons, so I have some time to think about it. The trip I really want to take (what I've been wanting to do for about 25 years now) is to take a cruise up to the Arctic, in particular Iceland and Greenland. I want to see glaciers, whales, hot springs, go hiking... all this better done while I have my health! I'll keep you posted as to what I decide.
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The maid asked for a pay increase. The wife was very upset about this and decided to talk to her about the raise.
She asked: "Now Maria, why do you want a pay increase?"
Maria: "Well, Señora, there are tree reasons why I wanna increaze."
"The first is that I iron better than you."
Wife: "Who said you iron better than me?"
Maria: "Jor huzban he say so."
Wife: "Oh yeah?"Maria: "The second reason eez that I am a better cook than you."
Wife: "Nonsense, who said you were a better cook than me?"
Maria: "Jor hozban did."
Wife increasingly agitated: "Oh he did, did he???"Maria: "The third reason is that I am better at sex than you in the bed."
Wife really boiling now and through gritted teeth: "And did my husband say that as well?"
Maria: "No Señora......" "The gardener did."Wife: "So how much do you want?"
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Minxie,
I think it's a great idea to splurge a little - and by all means take a vacation!
But I would take the vacation with the premise that you are going to be around a long time, not that you're not going to be around a long time. Because it will affect how you are able to enjoy your vacation. Being on vacation may not totally remove you from your worries or problems, so you want to take it with the right frame of mind. Take the vacation as a symbolic trophy that you are healthy and that you will have many many more years to come, in fact a lifetime of years to come. Take that long awaited for vacation and take a cruise to Alaska or a place where you can go and pet the dolphins. Enjoy a big time, you have been through a lot, so reward yourself. You will come back renewed and with a renewed sense of hope, I believe. When you come back from vacation you can start saving back into your 401K. Things will seem brighter to you, and you will have a renewed energy.
Hope this helps you!
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I heard from PinkPower. She is home now and surgery went well!
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Ladies -- I hope all you US ladies have had a wonderful holiday weekend -- and the rest of you -- I hope you are all having a great weekend as well.
My nine year old granddaughter helped me get out and put up all my inside decorations yesterday and she made it so much fun as she unwrapped and marveled at each decoration. She really loves my Christmas village and she will just stand and take it all in. DH usually moans and groans about getting out decorations, but was very helpful this year -- I guess one perk to being newly diagnosed.
Speaking of DH, he is really having a hard time with this. I can tell he is depressed and worried. I think it really hit him when the MO said "we don't really know how to effectively treat TN -- we just hit it hard with chemo." I'm afraid he will have a melt down when I lose my hair. I know he is already dreading me going through that.
And speaking of hair loss. I start my chemo (AC) tomorrow (Monday). My port site is still somewhat sore, so I'm dreading the needle stick. I've never been afraid of needle sticks or shots. They don't bother me, but for some reason I am worried about the stick through my skin into my port. Well, it probably has something to do with my brother saying the first time they told him they could no longer spray the freeze stuff on (because of some lawsuit) and stuck him without it being deadened, he passed out. They gave him something to put on it at home to deaden it after that.
Any words of wisdom on how to dress for accessing the port? At my chemo center everyone is out in the open -- no partitions or anything between people. I had read on their website a button down shirt, but I wondering if a wide neckline shirt wouldn't work as well or better.
Keep me in your prayers and thoughts tomorrow as I do for you as I read your posts each day.
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5thsib. I had AC if you need some support l will be here.
I didn't have a port I had picc lines i just wore loose clothing to make access easier, don't bother with buttons.
Take a blanket.
As far as the hair is concerned maybe think about cutting it short now - easier to cope with. Also you scalp will get sore before the hair loss so don't be concerned about that.
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Minxie, Dolcie is so right
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Great news about Pink
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5thsib...I had a port and it was great...I too was very nervous that it would hurt. The doctor gave me a cream to put on top of the skin over the port that numbs the surface. Hopefully they will do this for you. Make sure that you stay ahead of the nausea--if you even get any- by taking the meds every 4 hours or as directed. you are going to do great! As far as shirt...I wore button down blouse but also once wore a tank top..I say do what you feel comfortable most in.
Yeah that pink is doing well...another step behind you PINK!
Have a wonderful day
Maggie
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I finished treatments last month. Dose dense AC-T + Radiation for 5 weeks.
Well I'm ready for a vacation! If I could just get my body to co-operate. My body (hip joints mostly) just aches still and I have trouble walking if I've been sitting for a bit. At 45 I feel 80. One of my favourite hobbies is hiking so this is really hard for me.
I feel like a rollercoaster of energy up and down and hoping I level out soon. It anywhere from embarassing to damaging my work when I cry sometimes several times a day. Right out of the blue too, partially from exhaustion I'm sure. Anyone else experiencing this?
I think I am still in shock from the whirlwind of diagnosis to treatment phase, to next treatment phase to next treatment phase... it was a lot to take in.
I'm normally a very positive person so I'm sorry this isn't the best day to introduce myself I suppose as I'm not feeling very positive today.
But I'm glad I found this group that are triple neg too.
Kim
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Kim: yah your feelings are pretty normal.I'm still going through treatment but I have my high and low energy it just seems to be more low than high this time, I was told the feelings are accumutive(sp) and it can take months to recover after treatment, so don't beat yourself up.I think the worst thing about this bc is the triple negative part, and never really knowing if the treatment was effective or not.I myself am going through this now, I hate feeling sick, looking aweful etc and not even nowing if the chemo worked.My oncol just explained to me on Thursday, that the first 2 years are the worst with tn, and the recurrence rate is what she said EXTREMELY high within 6 months to 2 years, but after that it goes down to a better prognosis than someone with hormone positive, but I am scared out of my mind over it..
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Had a lumpectomy and was DX with TN breast cancer. Currently going through 4 rounds of T&C. Told I did not qualify for BRCA testing due to age (51) and adopted. My Onc is now supporting BRCA testing due to the TN diagnosis. Need results back before start rads. If BRCA positive, what type of preventative double masectomy do you go through? Have others done this or taken the path of vigilance instead?
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5thsib: I have a port and I don't even feel the needle going in. I wear a tank top with a button up jacket. Drink lots of water! I also bring a blanket. You will do just fine.
Kim: I'm in the middle of my treatments, then surgery. I have so many days that I just cry and cry. Yesterday was one of those days. I'm so scared of reoccurrence and I can't get it out of my mind. I'm on the roller coaster ride too. I think I'm feeling great, then before I know it, I'm back on the couch. I guess we have to tell ourselves, it's temporary and one day soon, we will be feeling like ourselves again. We can do this!!
Loafer: I am BRCA positive and even though my surgeon says I could just have a lumpectomy, I am choosing to have a bi lateral masectomy. Studies have shown that having the full masectomy doesn't change the reoccurrence rate but I don't care. It will make me feel better that it can't come back in the other breast.
Hope everyone had a good weekend.
Erin -
Hi ladies! Just wanted to give everyone a little holiday cheer with a pic of my house all decorated for Christmas! I really needed some holiday spirit this year and thought I'd pass it along to all of you who helped me get thru the hardest year of my life. Happy holidays to some very special women :-)
Melissa
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Hey Ladies! Been reading through pages and pages, can't remember 1/10th of what I read. Well hello to all the new ladies, glad everyone is doing well. Thanksgiving was a very quiet one, just DH and I. I cooked a turkey and all the trimmings m inus the desserts. Things are going good with me, still have shooting pains and lyphemdema on my BC side. I was told this is the healing process. I have been having weird sharp pains in my left lower leg right along my shin. This has been going on for better part of a month or 2. Guess is't something I need to report.
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Lory, I love that saying, Don't look back, your not going that way!
I've got to make that in a sign somehow!
Melissa: your house is beautiful. My DH put up lights today as well. Love it. Makes me in a happier mood having everything so festive! -
Hi Loafer. first time i had bc I was hormone positive. Second time I was triple negative. 6 years ago (almost 4 years after my first bc)I was tested for the brca gene and I am brca1positive. Then all my family members were tested all but 2 are brca1.I had 2 other sisters with bc also. I had a lumpectomy with rads with my hormone positive in 1999.But althought going regularly to the cancer clinic it was not suggested to me to have a double mast. but to have my ovaries removed, which I did. After being dx with triple neg this time I was told to have a double mast, to note also for almost 14 years of MRI's every 6 months then mammos every 6 months then ultra sounds and biopsies following the mri's on my other breast(right side) because of so many cysts, I actually got the breast cancer in 2 of the 3 spots they deemed to be cysts in Feb they had been very very early bc come July. When you are a know brca carrier you are so watched at the cancer clinic because of this, and the brca1 is the most comon culprit of the triple neg. although I had both. I think having the genetic test for you brca is important because if they find you have it they do watch closer because there is more that can happen to us that have the gene
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5thsib - I know the anxiety of first time chemo - I had my first last Tuesday - although I didn't have a port. You will be just fine and afterwards I didn't feel any different. I guess it will hit when the hair starts falling out.
So grateful for all the wonderful support from women on this forum - I learn so much every time I come on line.
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I've been reading all the responses to 5thsib queries re the port & finding it all very interesting....
I'm having mine put in on Wednesday.....an infusion port!!??
I'm a little nervous but more nervous about when we go to use it!!
Sooky I know, but is it less painfull than having the IV put in a vein?
Is it only the initial needle going in that I will feel??
I've had chemo before but didn't have a port.......
Melissa....your house looks beautiful
Aussies don't tend to get into the decorating as much as in the US or other countries but it sure does look stunning.....:)
Karen x -
adagio:do you go to the vancouver cancer clinic on 10th ave? who are your doctors ? this is where i go and have been for almost 14 years now
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