Calling all TNs
Comments
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Navy Mom:
There are some gals over on the TNBCfoundation.org board that had that testing ordered by their BS and it was done on their path reports; however, they are few and far between. My own experience was that once I found out about the different subsets, i.e., true basal, basal-like and triple neg, I became very concerned as my path stated nothing about what it was. At my first onc visit, I told her that I definitely wanted the testing to be done and she, having a lot of expertise in triple neg, told me that it would have to be ordered and then approved by my ins. company. Since treatment would not vary one iota for me (A/C & T), she felt insurance would not pay for it and it was thousands of dollars to have done on your own. I let it go at that point, figuring I would just convince myself that I had just plain old triple neg and none of the others! From the article that Mity copied here, and I was the one that posted it on TNBC, it appears that it still has no specific purpose to know at this point in time. It does look like in the future when and if more drugs become available and they can target same to the different subtypes, that this will then become a regular test on all TN pathology reports. Why those few docs of the ladies I mentioned requested the type, I have no idea, but they too were given the three choices all of us get (at least 2 yrs. ago when I was presented with them), of T & C, A/C & T and TAC, even knowing they were true basal. Hope this helps a bit.
Linda
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Hi ladies hope everyone had a good weekend. I am starting to get very nervous and sad and scared and angry . Start chemo on thursday and I just dont want to go through this
not really anything else to say just feeling very sad0 -
Monika..love your pic...I've got to get a new pic on here..that one is over a year old! My hair is totally out of control..I told my hairdresser to cut it short last time and either she didn't do it or my hair grew a couple of inches..My dd said I that I'm starting to look like her "old" mom. I don't want to look like that any more..I'm not that person anymore...or am I???
Linda..thanks for the info...I guess bottom line..is that if you are basal or not..it really doesn't matter as far as treatment goes..hopefully, in the future the researches can find something to combat the basal tumor..or whatever cause the other subsets...wonderful to be so special isn't it....
Swiftbird..good for you..one year out! Oh yeah..you are nervous..I still have twinges in my breast..and some aches and pains and freak out at appts..you are as normal as anyone else on here...I understand the fatigue thing...I freak out when I'm tired during the day or even at bedtime...sometimes it is hard to realize that fatigue is normal..we are allowed to be tired..just try to remember back b-4 you were diagnosed and probably didn't feel "right"...and then the stress of diagnosis, surgery and treatments...I would call that fatigue..unless you are feeling like that again you probably shouldn't worry too much.
And nope..no scans for me...but I still have to have an colonscopy this year..Yikes!
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Kymn, try not to be scared. It isn't half as bad as you are expecting. The other meds they give you will handle the nausea very well. Hopefully you will have as good an experience as I did.
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Kymm - Hang in there. What chemo are you doing? Based on your diagnosis, I would guess TCx4. That is what I did and it was not bad and I understand is generally well tolerated. I was fine up until the moment they put the IV in my arm. A little old lady walked up right at that time to bring me a snack (she was a center volunteer). She made a comment about how pretty I was and I just started bawling. My greatest fear about the entire thing was losing my hair. I am not going to lie to you -when it fell out I cried for hours. But I got over it quickly and got through it very easily with the help of a great wig.
You will be fine and it goes very quickly. Try not to worry too much or be too sad. I tried to keep a normal life during chemo (worked full time, etc.) and I think it really helped take my mind off of it all.
Drink tons of water, stay ahead of the nausea, and ice your fingers and toes!
Good luck!!
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Kymm..the first chemo is the scariest because you don't want to do this..really..but once you are there you will find out it's not that bad..and remember once you walk out of there that first time you are on your way to being DONE! And we are here for you...
I remember pouting each day b-4 chemo that I was going to quit and my DH would say fine..you don't have to go if you don't want to..of course I went but him saying that made me feel that at least I had a choice!
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Kymn: You CAN do this! It's scariest before because it's something you've never done before... you don't know exactly what it will feel like or how you will react to it. The actual treatment really doesn't "feel" like much, at least it didn't to me. The only things I remember was the benedryl and premeds that, once they injected them, I "felt" because I got kinda woozy all of a sudden (and I fought being sleepy). But you will get through it... I did... several others have... and you'll be on the other side of it sooner than you think! You'll have ups and downs, but just keep the finish line in sight and you'll get there. You gotta hit this thing with everything possible now.0
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Kymn - that first chemo is so hard, it really slams our diagnosis home. But once I got started, I finally felt like I was doing something to actively fight, and I clung to that feeling. Hugs to you.
I never found out my sub-type, and I don't think I want to know as treatment doesn't change. I need to really believe I can beat this, and a little bit of denial goes a long way for me. In fact, just having the cancer removed has lifted my spirits, at least for now.
I'm getting my drains out tomorrow...I hope it doesn't hurt, ugh. I'm feeling a little discomfort from the nerves, but hanging in there. I've had a good, hard look and am surprised that I'm not all that put out. I'm still in "thank heavens it's OUT" mode.
Have a good night everyone!0 -
Kymm--I guess I am the oddball here. I was glad when the day finally came to start chemo. From the time of dx to the time of TX #1 it was almost 3 months. I felt ready to begin the battle so I could win it. And as far as the hair going. Yes it was devastating. I had a long blonde ponytail since middle school and I was now 49 yrs old. I had my hair dresser give me a cute short bob a few weeks before I started chemo. And when it started to fall out I had my DH shave my head. I cried while he did it(so did he) but when he shut the clippers off, I put a bandana on my head with a little attitude and felt glad that it was done. So go get em girl. You are gonna kick cancer's A$$!
Linda--Thanks for info on basal cell. It makes sense to me that the TX would be the same but still wish I had the info on my tumor. Just a wee bit anal control freak I guess.
Navy
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Titan---Yep, I am doing the colonoscop this year,too. In fact my DH had his first one last month and the Surgeon found one fairly large "angry" looking polyp. Biopsy turned out B9 but he was told that if he had waited another 1-2 years things could have been alot different. So that inspired me to get mine scheduled. March 28 is the lucky day. Ya know, after everything we have been through, I was not gonna let the yucky prep stop me from getting things checked out and then live (or not) in regret because something was there that could have been caught early.
Navy
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Suze35: You'll be fine with removing the drains. They will take them out quickly. I was very nervous about drains too. They told me to take a deep breath, and then blow it out... and that was it... drain out! It shouldn't hurt ... one of mine I didn't feel, but the other was done by a newbie and he went a little too slow in removing it. It didn't hurt... it was weird. For nerves, take half of a pain pill or whatever you're allowed to take that you feel comfortable taking prior to your appt. It will also help if there is any minor discomfort. The stitches holding the drains in is what is most bothersome.0
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Kymn, I am right there with you. I am at my parents tonight and will get port Monday morning. Mom going with because husband has to work. But chemo starts Thursday and he'll go with me then.
I got my hair cut short Saturday just to get one step closer and spent an hour online and too much money ordering a few scarves that I don't want to wear, but at least I have a choice if/when I change my mind! Have not met with wig people yet but I need to, hopefully by the end of the week. I am still struggling with the hair issue, but it is what it is. (sorry that sounds lame) It sucks. IT SUCKS! There's no way around that. But I'll be thinking of you and the others starting this week. Quite a list.
For those of you who already have wigs, how long did it take to order/receive? What kind of shampoo did you use for your shaved/growing back hair? I don't see a mention of shampoo on the chemo prep list. I got everything else they had at Shopko. I could open my own pharmacy right now.
Good luck and prayers for all!
Kristy
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Suze35- I am with you on the ugghhh. I will be getting 2 of 4 drains out tomorrow. the other 2 are more prolific. I was told by the PS that they had to be less than 25ml in 24 hrs.. 2 are down to 7ml and the other 2 are at 50 and 100 ml. That seems like quite a bit to me, but I will ask about that tomorrow,too.
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Suze,Beccad- I got my 2 drains out last monday and like you guys, I was quite scared about it. But to my suprise, it didn't hurt at all. It goes really fast and I had decided to keep my eyes closed during so I didn't see how long he had to pull out of there.And when they are out it feels good!!!
I went to see a PT last friday and it really helped my arm and the tendon in my armpit. I can lift my arm higher and it doesn't hurt as much. I go see her for 3 more treatments this week. My nerve pain in my arm has diminished. I can better tolerate my clothes touching it now. So I see the light after a couple of hard weeks............... I will do this!
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Titan, thanks for the words of encouragement. I was happy you started this string; does it seem long ago? I am pretty freaked out. I'm going to try to move up my appt a few days and get some of my lab and radiology work done before I see my oncologist next week... I'm worried that over the weekend the breast i had my lumpectomy on is all of a sudden pretty sore and it feels swollen. Whatever is going on, it's pretty deep. It took months for swelling in my armpit to go down so I think I'm having lymph fluid stuff going on; I am about 7 months out from my surgery, about 5 months out from my radiation. Arrrrggghhh. I know having to keep bc vigilence is a lifetime gift that keeps on giving but, dang. *sigh* Last night I woke up at 1am and started to plan my recurrence plan. As Pam says, this does friggin suck.
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Heidi: Lovely dogs and horses. I would love to get the fam a dog, but my little people aren't ready.
Kymn: The hardest thing will be the hair loss, but make up a game plan now. So when it happens it won't be so dramatic. THOSE 4 TREATMENTS WILL BREEZE BY....
Hope everyone had a wonderful weekend.
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Huskerkkc - I used Johnson's Baby Shampoo every time I showered, even on my completely bald head. You want to keep your scalp healthy. I heard some people have weird bumps and pimples: kind of like "cradle-cap" or "cradle-crap", so keep it clean and let your pores breathe.
I didn't order my wig; I went to a wig shop and bought mine. I tried to do the scarves but they just weren't me. I prefer to be inconspicuous so I bought wigs that were as realistic as I could afford.
Just keep telling yourself that losing your hair for a few months is small price to pay for killing cancer so you live a long healthy life! It's only temporary, it's only temporary. You will love not having to pluck or shave!
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Kymn: You have been given so much great advice here and I feel that I don't have much to add except that I was relieved that the chemo was easier then I anticipated. Fear of the unknown was worse then the treatment. I hope you have few side effects and know that it will be over before you know it. Hugs!
Suze: I was amazed how easy it was to get the drains out--What a relief it is once they are!
beccad: I got out the first two drains then had to wait a few days for the last two. Best of luck to you!
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Husker - I didn't even use shampoo when bald, just bodywash all over. Showering becomes really fast.
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Kymn I wish I could hold your hands and look in your eyes and tell you This too shall pass. (((((HUGS)))) I know how scared I was, but look inside yourself and and look around at the people who loves you and before you know it you will gather your strenght from that. Best of luck. I will be thinking of you. I know you can do it. Hang in there!!!!!
MBJ I had my post op today. I cut all meds. I am in a little pain but can manage it. I forgot to take my camera to doctors appt. I took pics with my cell not sure if I will be able to upload to forum.... It looks ok. I can't believe I have 700cc's.
Titan. Thanks for the compliment on my picture.
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Becca - that stinks that you have two "producers". I hope they ease up soon. My non-lymph side produced the most, but it only had one drain. I hope your removal went ok!
cc4npg, Babs & MBJ - I appreciate your words of wisdom! It didn't hurt really, like you guys said. But it was a bit weird, that's for sure, lol.
Babs- I'm really glad to hear you are feeling better and that PT has been helping. I'm having pain today, more muscular-type I think, after my drain removal. I guess the area got beat up in the process.
Husker - I stopped using shampoo on my head, and just used a nubby washcloth to keep the dead skin from building up. Now that I have a little hair back, I'll start using Aveeno all natural.0 -
The 2 drains that were removed today went really well. It did feel a little strange when she was pulling the tubing out, but it only lasted a few seconds. I go to see the BS tomorrow, and the back to the PS on Friday. The PS appt got moved to Friday, because they are doing starting some kind of new lipo procedure trial on Thursday. Wish I could participate in that, but gotta finish this stage of the BC challenge first.
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Husker - I'm guessing you are a Husker's fan............"here's my sign". My Uncle (married to my Mom's sister) is from Nebraska, grew up on a farm and is a die hard Husker's fan. He moved down here in the 60's when he married my Aunt, but still went home often and always went home to attend games with his Dad. Needless to say, my cousins are Huskers fans too.
Kymm and Husker - The first chemo is hard because you don't know what to expect, all of the what ifs and unknown........My children, DH, Mom and best friend came with me to my first infusion, they only had one chair available so they all sat on the floor around me. I read everything trying to prepare, but it was still unknown. As suggested above, take the nausea meds given and if by chance they don't work, don't tough it out, call the onc for something else. They have medications that stop vomiting (Emend), but don't usually give it unless the other meds don't work. What I found so strange is that I think I expected to feel different or terrible immediately following the infusion, but I didn't. It was delayed - which you will learn - you will have a cycle of your good and bad days. Water is your friend, drink plenty of it before during and after. Biotene mouthwash and toothpaste are a must during chemo when your mouth is sensitive. I used baby shampoo on my head until I had enough hair that I needed conditioner again. If you get red itchy bumps on your head (happens sometimes in small patches), use peroxide on a cotton ball, it cleans the hair folicles and feels good. (((Hugs)))) know that we're all here holding your hand.
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Please excuse the coming profanity. Fuck. I hate this fucking disease.
Just got my path report back. I had a total of 9 nodes affected, 5 still had cancer, but the report didn't say micro met or not, just over/under 2.5 cm (they were under). I forgot to ask how many were removed. Of the two 4+cm tumors in my left breast, I had 3cm of tumor left. I had LCIS in my right breast. BMX was the right choice.
I'm convinced my cancer was regrowing between chemo and surgery, based on what I felt, but it is hard to say.
I'm trying to be positive - even with residual disease, I had a response to the chemo.
I don't know if I'm going to push for more chemo. Does anyone have any studies that have been done on the benefit?
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Swiftbird..you have pre exam anxiety and it sucks..I had this creaking/pain in my neck (no..not my DH)..went to see the onc..told him about it..and said it may be arthritis but he wasn't concerned..as soon as I walked out of his office the creakiness went away..haven't felt it since..hopefully that happens with you..oh and my cancer breast and underarm was hurting too..he did a BE (and it hurt) and that pain went away too..I don't know..but sometimes it may be in our heads...the pain feels real but having someone say don't worry about it makes it go away..I'm also quick to say that you can't ignore things either..please.I don't mean to say that...it is just so hard to realize that a cold is maybe a cold, a cough.is a cough, a breast pain..is just nothing...do the 2 week rule and go with that.
Oh and Husker! I'm an Ohio State Buckeye! Welcome to the Big 10! I'm so excited to have such a football rich tradition in our conference...Anyway can you get get me tickets for this fall's game? My DH works for OSU and we have gotten season tickets forever! Maybe we can work something out??? We can get you tickets for when OSU plays the Huskers in Columbus...or at least try to..that game will be HUGE!
Ok Suze..dang on the positive nodes but hang in there...we all hate f'ing cancer. Will you have more chemo? Probably rads for sure right?
Oh..and taking care of the bald head thing...after my hair was gone I used shampoo and conditioner for damaged hair every morning...pretended that I had a full head of hair..why not? I also washed my wig every few days..I would put it outside on the table on the porch to dry...called it the Pope's table (for those of you familar with Bucca De Beppo restaurant)....even though cancer, chemo sucked..my wig was alot of fun...people thought my DH was out with another woman..funny stuff
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Suze - sorry to hear about your path report...go ahead vent away. That's what we're here for. Good thing it the cancer is now gone since your surgery. I'm thinking positive.
Kymn - the ladies are correct...the first chemo is the scariest. I was terrified and it wasn't anywhere near as bad as I expected. You can do and we'll be here for you all the way.
Titan - I hear you about the wigs being a lot of fun. My dog used to steal my wig all the time. The antics we went through with the wig were hilarious (I could have written a book about it).
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Kymn: I'm 11 days out of my first chemo and, like everyone else has said, the unknown factor can be the worst part. The pre-meds help and the 'scripts for home do also.
I felt just like you 12 days ago. That day I kissed my kids and put them on the school bus and just made myself keep putting one foot in front of another to get to the hospital. I know I have no other choice, my 11 and 6 year-old daughters need me to do this and anything else necessary so I can get back to being their mom like I used to be.
I was scared of treatment but I told myself the docs and nurses know what they're doing and, as TNs, chemo is a big weapon in our arsenals. Think of it that way, if it helps.
The funny thing is that in all the months since my dx, through the surgeries and the appointments and even the discovery that I also have a benign brain tumor (not bc), I never got angry - and I have a temper, just ask my DH. LOL. But in the days since that first chemo, while I felt weak and achy and dependent on others for the first time since childhood, I've gotten quite pissed off.
Pissed I have to do this, pissed my life has run off track, pissed I had to cut my hair off last Friday, pissed enough to kick back - I'm gonna kick cancer's ass and then some, because now I'm mad!
Also, now that I've done one tx, that fear of the unknown is over, but I find I'm pep-talking myself for number 2 on March 24th. Someone on these boards has a great John Wayne quote in her signature, it says something like: "Courage is saddling up even though you know what you're in for." I totally get that now. What's helping me get ready to saddle up again is counting the infusions down - one down, three to go. You can do it girl.
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jenn3 & Titan...You are so right! A Husker (Nebraska Cornhusker) through and through. I grew up in Lincoln, NE, graduated from University of NE-Lincoln, married a UNL graduate, my sister and brother-in-law are graduates, my dad was HS friends with Tom Osborne...get the picture?! We are so excited, Titan, to join the Big 10. We also have season tickets, so while I can't promise anything yet, I'd sure be glad to see what I could do. We have several connections to others with tickets. Last night I was in Lincoln at my parents and we went out to dinner and guess who was at the next table, BO PELINI! Everyone was so respectful of his privacy (he was with wife, kids, and another family), but I so badly wanted to take his picture! My husband wouldn't let me
(sorry for the sidetrack, canser sisters!)Suze35...You are right-it does suck. Suck. Suck. Suck. (Have you seen The King's Speech, when he says F__K! F__K F__K! for about 3 minutes as a therapy but also because he is so discouraged and upset with his life-long affliction. It's great. It works for our situation as well (sorry-not an F-word gal myself, but understand the sentiment and your need to use it.!) How many treatments have you had? When do you see onc again? This is a temporary setback, but this is do-able.
A tip I read from a great book I'm reading is the 3-day rule: try to give yourself three days to wallow and then try something else. We're on a roller coaster, and your'e on the downhill plummet for awhile t but the roller coaster has to go back up again. Don't get stuck down there, but stay for a little bit-you need to cry and scream and swear and go fetal. But then move on. And then come back later when you need to. (all credit to crazy sexy cancer tips by kris carr-I highly recommend it-see my post in the March 2011 Chemo-lounge)
Kristy (aka huskerkkc)
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Suze, Sorry about your path report. I don't blame you for the profanity, bring it on. I hate this disease also. The good news is, surgery removes it, and, like you said, you did have a response to chemo. I am wondering if they tested your receptors again for triple negative. I had to request this. I would think they would recommend radiation for you? Hang in there!
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Husker - my Uncle is from right outside of Lincoln - small world. Excited you got to sit close to Bo Pelini, but I get the privacy thing. I loved Kris Karr's books - Crazy Sexy Cancer - she pretty much says it like it is.
Suze - use all the profanity needed, this disease sucks and sometimes there isn't any other way to put it than what you said. Talk to your onc about further treatment, what does he think, etc... (((hugs))) I wish I could be there with you to scream.
Michelle - glad chemo #1 is behind you. I had a calendar with the countdown (12, 11, 10....). I liked seeing the smaller numbers each week or bi-week depending on which round I was on.
Tomorrow I meet with the rad onc to discuss radiation of the spine for pain management. The pain has been off the wall, it seems that the pain meds aren't touching the pain - ugh! The onc may have to switch me again, we'll see on Wed. when I meet with him again. After I get the radiation out of the way and the pain is hopefully under control I'll start chemo. It looks like I'll be taking Xeloda first, scans in 6 - 9 weeks to see if the tumors have stabilized.
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