Calling all TNs

bak94

Thanks for the bolus information. My rads are still not for a few months, as chemo first then surgery then rads. Also, when people say tomo, is that more precise? Is that something I need to look for? I will need my im nodes and possibly deeper nodes radiated.

Anonymous

bk- this has been discussed before in here...most don't get tested for basal since it typically doesn't change your treatment plan and it is an additional lab procedure (costly, as I recall). Knowing you were true basal vs. "basal-like" would, IMO, only serve to keep your stress level higher, wondering if your tx was/is sufficient to kill the beast.

I'll pass... in fact, I did! Why go looking for trouble? 

MBJ

bkj66:  I think either you are or you aren't and if you are it's on your pathology report.  Mine was right there in black and white but I am not going to give it any power over me.

Suze35

Sugar - I think bolus treatment is dependent on size/location of your tumor(s). Mine were fairly large and closer to my skin.

bk - I wasn't tested for basal-type that I know of, but we are assuming I am given how quickly the cancer appeared and it's chemo-resistance. It doesnt change my treatment plan really, we are being aggressive regardless. I agree with Heidi and MBJ. We can't change it, and I don't want to give it any more power to mess with my mind.



Speaking of...I came up with a good way to describe my current mental and physical state today. I am Schroedinger's Cat, lol!

ellipses

Thanks all who answered by question about taxol and neuropathy. I feel a lot calmer now that it doesn't have to be so bad.

hydeskate

I officially need a secretary, Chemo brain has struck yet again, I had an appt this morning with my ENT to check and see if the hole in my ear had healed.  Well the appt was a 950am, I remembered it at approximately 330pm...I guess I will find out if the ear is healed when the airplane takes off Monday morning to take me to California...I will have to pay $50 for missing the appt and then will have to reschedule.

MBJ

welcome to chemo brain. 

rella40

Hi everyone,

Welcome Ellipsis, I have a Naturalpath doctor along with all the others, and the B-6 is a good reccomendation.  I did take the B complex with extra B-6, but my new chemo is less effective when taken with folic acid, so I was switched to just B-6.  You may want to check with your doc about that or any supplement before you start. I have had several types of chemo, and some the neuropathy reverses.  Treatments and SE's have come a long way in the last ten years...I have literaly taken part in it.  You will do fine.

Kimn,  Keep your chin up....the more you do now to treat, the better your chances there won't be more later. You sound like a generally happy girl, focus on that.

LOL Suze, that's my FAVORITE show!!!! And oh how I can relate to that one.I am soooo happy to hear your good news, I think you are on a roll.

 up kind of late, I am alone in my house for the first time ever!!!  My husband is off having a sleep study, my son that lives at home is away and I am here by myself.  Kind of weird 'cause I found out there was a robbery down the road last week (we live in the country) and then this guy came to my door out of nowhere this afternoon saying he was out of gas and wanted to know if I could give him a ride to town for gas. Of course I said no, he was huge!   This is very similar to the robbery scenario.  While you take them in for gas.....someone pulls into your drivew ay and steals anything of value in the time they have!!! And they say crimminals are dumb. So all the windows and doors are locked and I am going to try to sleep.  Lucky me, I have a big big dog. And a shotgun I don't know how to load.......:):):):)

Sweet dreams and prayers to all 

kathyrnn

Hi Ladies,

I've learned a lot from just reading your posts.  Suze, I'm guessing you must be in my area.

I had my first dose of Taxol on Wednesday. (Yes, I hit the lottery yet again, 75% chance of getting one or both of the experimental treatments in the study......and you guessed it, I'm in the 25% control group, lol)  I can't say that I'm thrilled with my oncologist, but I love my infusion nurse. 

I was not given one bit of information about my Chemo by my Onc., other than which drugs I would be receiving.  (Thank you ladies, thanks to you  I was at least hydrated before and after)   I did wander over and pick up a pamphlet, at least.  When I met my infusion nurse, he asked me if my Onc. had mentioned any supplements I needed?  I told him, well I just  asked her these two specific questions: 1. Any supplements I specifically need? 2 Any supplements I should avoid? She said no to both questions.  Luckily my infusion nurse, had the pharmacist come up and explain the neuropathy to me (I felt bad because I kept laughing because I have a bad back and my feet have been numb for years).  She recommended B6 100 mg and B12 1000mg.

One of you said something on here that rang a bell with me (*please wave your hand if it was you, I can't find it now*) It was something to the effect to stay on your doc and make them do a MRI if you don't think your tumors are shrinking.  One of my Onc's answers to my question put me over the edge for a few minutes.  I asked her at "what point in the treatment would she be checking how much the tumors had shrunk, and what specific test would she be using".  She looked confused by my question, and then told me they wouldn't be doing any testing.  I asked her how they would be measuring for "tumor shrinkage".  She said "oh I feel it with my fingers and measure it with a tape measure".  When I questioned her on this she told me it was the "standard of care".  ARE YOU FREAKING KIDDING ME!!!! We're in a new millenium here!  Ultrasounds are non-invasive and accurate, and you're going to be basing my progress on your fingers and a tape measure!  I haven't quite decided what I'm going to do about it, but if I don't think it's shrinking, I'm gonna think about private-paying for an ultrasound.

BernieEllen

Hi everyone, had chemo 3 last wednesday.  Bipolar mania is going up the wall, mental health pyschiatrist can't fit me in for two weeks.  I don't have a port fitted and veins are starting to collapse.  3 not the best for me.

bak94

Thanks for the info on basal type, I just haven;t heard it mentioned much and certainly not by my doctors. Didn't know if it was something I should be aware of, but if there is no difference in treatment I guess it does not matter knowing. Now I am kind of afraid to ask my doc about it...

BernieElem, I just had treatment 3 and it is the day after. I don;t feel well either. I hope your pshyc can get you in on a cancelation. Are you going to get a port? I have done it both ways and strongly suggest a port, much easier.

rella40

Good Morning, I am still here, no robbery at my house last night!!!  Hubby is home from sleep study, he didn't get any rest either, so I am sure it will be a laid back weekend, open houses are next week, and a 50th bday party to attend!!!  I will be 50 this year also, and to be honest, I had a lot of doubts about having this bday way back in 2002 when I started this nightmare.  Thank you God.  This is a horrible monster, cancer in general, takes so many memories from our families futures. 

Kathryn--I hope I am not alone in saying NO WAY!!!  You are your own advocate, no one is going to be more responsible or attentive to YOUR medical case than YOU!  Even if you have the smartest, most compassionate, caring doctor in the world, he/she has other patients...you only have you, and you know your body.  God made it possible for you to read the signals.  Not saying we catch every signal, but they are our bodies, not theirs.  Ask your doctor if she would be measuring her own tumors without any modern machinery, see the reaction.  Your insurance pays her salary, she is working for YOU.  If you are not comfortable, switch doctors.  I have recently been assigned a new doctor at my treatment center, and I am more uncomfortable every time I see her, I am about to switch.  I am a girl that wants a plan---Plan A, B and C for a backup, and I can't even get plan A from her.  Keep me/us posted on that please.

BernieEllen-So sorry to hear you are having such a hard time.  This is an emotional rollercoaster,  and sometimes the trip to the top/edge is very high.  Makes the ride on the other side too fast and scary.  I have never like rollercoasters, only rode one once or twice, by then it was official.  Remember, we are here to talk to or vent or whatever.  I am a newbie, but I feel very welcome here. Also, have you tried any relaxation techniques or tapes?  I just started this, along with my Faith, and have had nice results.   Please let me know if you would like more info, or you can probably find it online. :):)

And on one other note: chemo brain--I am on Xeloda, which I read converts in the body to F5U, one of the biggest chemo brain drugs around, and this is my second time with it (WHOLE other issue I would like to discuss sometime-soon), I have had well over 50 chemo treatments and 72 rads in the last nine years.  It's a wonder I know my own name LOL

Babs37

Kathyrnn- My onco mesured my tumor and node by feeling it with his fingers and some instrument everytime I saw him during my chemo. He could easily feel my tumor getting smaller and softer too so we could see that the chemo was working. I don't think he would have sent me for a mri unless he could feel the chemo was not working fast enough or if my tumor wasn't shrinking or got bigger while on chemo. When the chemo was done I was sent for a mri/mammo/us so he could see what was left inside for surgery.

Suze35

Rella - whew, close call on the robbery! I had something like that happen to me when I was alone in high school, thankfully I knew better also! I do hope you enjoyed the peace and quiet though :-). DH and I watch repeats of that show all the time, lol. And good to know about Xeloda! I'm starting it in a few weeks...as if I need more chemo brain...



Kathrynn - probably me who mentioned the MRI. I had two tumors, one could not be felt. When I finished my AC, we hadnt seen much clinical response, so she ordered an MRI. When I started my Taxol/Carbo, the tumor I could feel seemed to melt away, but my lymph nodes didn't do much, and probably got bigger. Because of my tumor response, every doctor told me it was fine, scar tissue, blah, blah. I could have pushed for another MRI (my doctor would have agreed) but I wanted to believe them. That was my error, and my cancer had progressed at the end. While Babs is correct that doctors generally measure by touch, if you are not comfortable with that, I truly believe you have the right to better screening. Push your doctor to provide the care you feel you need. We only get one chance at this, and it is your life at stake, not your doctor's!



BernieEllen - I'm so sorry you are struggling and can't get to the doctor! I would recommend a port, as stressful as that may seem. It is so much easier on your veins, you never have to worry about multiple sticks, etc. I use EMLA cream before to numb it, so no pain even. Be gentle with yourself, I hope you are feeling better. Hugs.

MBJ

Rella:  Did you report this stranger to the police?  Hate to think he just moved on to the next house and it would be good to have a description of him.  Huge-I shudder to think!  So glad you are safe and your DH is home. 

Kathryn:  One of my tumors could be felt to the touch because it was on the outside, but my other tumor was under the nipple so I had to have two US's prior to surgery.  If it is close to the surface it can be felt and if it isn't it requires an US.  Hope this helps!  Also, my Onc advised to not take any antioxidants for 3-4 days-the same days you take the anti nasea and steroid pills which made it easy to remember.  L-Glutimine is an amino acid and can be taken during chemo.

MBJ

Bernie:  My veins held up until chemo was done but now they can no longer find a vein at all!  Do what you can even if it means getting a port now.

riley702

Luah, congrats on the toenails! I finished chemo last July and my big toes are the only nails that haven't finished regrowing. They're about 75% back, though. I'm not sure if it was the Taxotere, Xeloda, or A/C that trashed my nails, or whether it was all of them combined. They started falling off during the Taxotere and Xeloda, but didn't start regrowing until after I finished the A/C. The fingernails went first, but also came back faster; then the toenails.

Also chiming in to recommend a port, if possible. It was much easier, and used for the weekly lab draws, too.

BernieEllen

thanks rella. Feeling a bit more together now.  Will look into the relaxation. Hope all are well

GuyGirl

PT/CT Scan tomorrow.  It was a year ago yesterday that the Dr. told me I had cancer.  I am a different person from back then.  I have learned to tell people no for I am no longer able to do everything people ask of me, but I still feel guilty when I do it.  All in all this has been a pretty quick year.  I have met so many people this past year and have made many new friends,  Thank you all for all your prayers and support.  Wish me luck tomorrow.

MBJ

Guygirl:  I hope your scans are clear and you get to dance another year with NED!  My one year anniversary was pretty emotional.  Be extra gentle with yourself.  Hugs!

Suze35

GuyGirl - I'm keeping everything crossed that your scans are clear!  I know I am a different person now too.  I find I have little tolerance for mean, bad-spirited people.  I have removed several from my life over the past 9 months, and while my circle has closed a bit, I am the better for it.  Saying "no" is important - you have to take care of YOU so you can be better for THEM.  Hugs.

Spent a great day putting my garden boxes together - lots of work!  I have two 4x4 veggie boxes, had to get the sod up, level it out, put down mulch around them, mix the dirt, then fill them.  Whew!  But I should have some awesome veggies to show for it down the road.  And all organic I'm proud to say!  I'm having my broccoli tonight :-).

Put an offer in on a car - not the green one, too many mechanical issues - but this one is white, and pretty much in mint condition.  If all goes well, I'll have it by week's end.

Hope everyone has a great Sunday!  Grilling some fish tonight, yum!

MBJ

Suze:  Glad you found an even better car and that was great advice about cutting out the people who are not there for you!!!

Loislee2

Hi, I am new to the discussion boards. I decided to post on here since I seem to be Triple Negative. I did not learn of this term from my oncologist. I learned of it when I went to a free excercise class for cancer patients called Fit to Fight. There I was asked from one of the other cancer pts what cancer I had. She told me she was the same and called it triple negative. I had done some studying out of the booklets I was given by Oncologist, so knew I was ER-Neg and Her-2 Neg. So I am assuming I am PR- neg. I plan on calling my oncologist or my cancer care coordinater tomorrow to talk more about my pathology report since I have been getting more information online about TN. If anyone wants to give my any information on what other questions I could ask to be more informed I would appreciate it. .

I am 56 years old. I had a lumpectomy on May 9th and sentinel node biopsy. I am starting Chemo on June 16. No idea what drugs I will be getting. I will be having a ECKO done tomorrow and I will get a port placement on June 13. The chemo is every 3 weeks for 6 sessions and then radiation after it is done. There is more info on myself on my biography.

I am blessed to find this website. What I have read so far has helped me understand more.

Titan

Hi Loislee! My oncs never came out and said I was Tn either...I figured it out from here...Everytime I tried to discuss tn with them..well they never acted like it was a big deal...It was like..here is what we are going to do for you..we are giving you the strongest chemo available..we are going to try to kill any cancer cells that may be floating around...they have never given me an expiration date...no they have not ever said that I'm good to go..but for now I think they are cautiously optimistic..

Just the other day the ONC said "you are two years out from surgery"...I'm still trying to figure out he was surprised at this or not..afraid to ask!

MJB..I don't think my path report said anything about basal cell type.. It said that 20% of the total tumor was in situ..and focal cancerization of lobules was noted...which is pretty much Greek to me.

Titan

Oh..and Guygirl!  Good luck tomorrow with your scans!  Can't tell you not to freak because we all do.....One year out..that is a good thing but very emotional...you are remembering what you happened to you one year ago...try to focus that THIS year..you will not be having surgery, chemo, lose your hair, rads etc...nope..you are not the same person..you have changed..we all have...

hydeskate

Titan-I had a similar experience my GYN who is the one that figured out the quote Hemotoma was actually breast cancer was shocked when she saw my name on the chart, she didn't thnk I would still be alive not only that but the fact that I was NED and didn't look sick.

kathyrnn

Thank you everyone for your advice and forgive me if I miss someone.

LoisLee, welcome.  I'm a newbie and these women have been more informative and helpful than my doctors!

Hypeskate- What is "NED"

Rella- You've been fighting this battle for 9 years?  Now I AM scared shitless, lol. I admire your strength.  I'm gonna give my onc. a chance, but we've already got 2 strikes (Not giving me any preparetory material for chemo, not telling me the supplements I should be taking).  Forearmed is forewarned, I'll make sure to be proactive.

Babs, thank you.  That's what really spooked me was that the onc. said there wouldn't even be any testing of tumor size prior to surgery. (I may get a MRI, but only if I stay in the study).  I'm wondering if she meant she doesn't test, but the surgeon takes over and orders her own preferred tests?

Suze, thank you too.  I'm going to try not to knee jerk, but it's MY life, and I'm going to do what a girl's gotta do.  :-)

MJB - I have the same situation.  My larger tumor is deep below the nipple and can't be palpated.  Even though both tumors have the same type CA and sub-type (If I understand them correctly) the deeper tumor is denser and they believe it's some kind of lymph node, which makes me nervous.  If in fact it's some type of mis-placed lymph node, and it's closer to the chest wall, I want to know that it's being watched.

Riley, thank you....but you just plain depressed the shit outta me, lol.  My one luxury in life is mani-pedi's!

GuyGirl- You're in my prayers today and thank you for telling me the year goes quickly.

 I hope to emerge from this challenge a stronger, fitter, better person.  I hear what people were saying about having both trouble saying no, and having to evaluate friendships.  My friend's have told me that for the first time in my life I have to think differently.....it has to be about what I need, I have to put myself first. (Easier said than done when you care for a frail elderly Mom).   I've already started learning to say no.  One friend got sliced out of my life several months before I even found out about this.  It is the first time I've cut a friend out of my life in over 30 years!  It was truly distressing, but it had to be done, and they were warned repeatedly it would happen.  (When I drew the last line in the sand, this friend told me I'd never stop being their friend.  I told them they didn't really know me as well as they thought, even after all these years  Now they believe me!)  I'm also receiving unexpected blessings.  The phone call that finally made me sit down and sob was a shock.  My ex-husband and I haven't spoken in 5 years (we have no children, and there was no reason for us to interact, it was not a friendly divorce.)  Two weeks after I was diagnosed, there was a message on my answering machine from him, telling me how sorry he was, that he had gone to church to pray for me, and to call him if I needed anything.  It took him tremendous courage to make that phone call, and I called him to thank him.  We had a long conversation, with healing on both sides.  These challenges really make you take a look at what's important in life!

Babs37

Kathyrnn- NED means No Evidence of Disease

Kymn

Hi Ladies, Hope you all had good weekend. I am exhasted from mine, I had company all weekend and my DH birthday party and then I tried to get some garndening and laundry done yesterday whew I am so tired. Figured i needed to get some stuff caught up as I am back in the chair for #5 on thursday. Its so frustrating you just start to feel like your self again and the bamn you get another dose. sigh, well just going to take it one treatment at a time. When I am done this one I will finally be able to say I only have one to go.

Hugs Girls

Welcome to the newbies looking forward to getting to know you

Fighter_34

@Kymn only one more to go after this one. I took 6 rounds of TC and it wasn't the most pleasant thing on earth to do, but I got through it. 

 I find myself getting back into the swing of things more and more each week. I was out all weekend girls night out on Friday, a wedding on Saturday, and the park w/ the kids on Sunday. I didn't get TIRED the whole weekend and that right there was an ACCOMPLISHMENT!

I am 2 months from my 1 yr. cancer/versary SCARED but thankful.