Calling all TNs

Luah

rella40: That is fantastic news - you are an inspiration to all of us!!

Painting, OBXX, blondelawyer: hoping all the nasties ease up and you feel better soon.

Titan: Onc had trouble finding what I know is there, so she may think my throat just normally feels like this, or, she said, it could be a low-grade infection that's just not showing symptoms elsewhere (though it's been > 2 weeks). Obviously it could also be big trouble but at a very early stage. So I'm glad she ordered the CAT scan, though I hate waiting.

MBJ: Will a CAT show issues with thyroid? I honestly don't think it's related, as my metabolism is fine, normal weight, appetite and energy to do 2-3 miles every day. 

Suze35

bkj - thank you for asking, unfortunately I'm still in headache hell .  I am 99% sure it is a migraine, as I have a history of them and they are usually "let down" events.  When I'm stressed, and the stressful event is over, the headache comes on.  They can last days, which this appears to want to do.  I've been taking the edge off with Vicodin, but just have to wait it out...

I'm doing both Avastin and Xeloda - for the same reasons Riley did.  We are hoping that anything microscopic out there we can't see will get blasted by the drugs.  As Riley said, it may be overkill, but I have to do everything I can.

Taxol/Carbo was pretty doable, MUCH easier than AC, although it was cumulative so at the end things were hard.  I was mostly tired, and would feel like crap for two days due to my pre-meds.  But no specific problems that I can really relate - except heartburn.  Oh that was terrible.  But that was probably from all the chemo put together.  I did need Neupogen shots my last five weeks, so be prepared for low WBCs.

Rella - oh, I am so very happy for you!  What wonderful news!  You are just a cancer-kicking machine, and so inspirational.  I'm glad the Xeloda is doing its job, and I hope it continues for you.  And I agree - NOT TODAY!!

blondelawyer - hoping your scans all go well.  Scanxiety sucks - Ativan helps .

Luah - I can feel lymph nodes in my neck that my doctor can't find, and they don't show up on scans.  Sometimes, we are just so in tune with our bodies, which is a good thing.  But nodes can normally be up to a centimeter in size.  Is it soft, or hard like a bb?  Soft is good.  Keeping my fingers and toes crossed for you!

lovelyface - yay on getting the PET scan.  Keep on fighting through, Rella really said it best - NOT TODAY.

MBJ - thanks for the positive words about your friend and Xeloda.  I'm really hoping it is my magic bullet, but I know how complicated this stupid disease is.

~~~

Heading back to bed with another Vicodin.  We know my BP is good thankfully, so just need to ride it out.  Have a good day everyone!

OBXK

Rella40 - I'm worn out, just from reading your post!  So glad the liver mystery has be resolved in your favor. Thank you for your kind neuropathy advice, I awoke feeling much less emotional. They have now identified a biomarker, for people who are at risk for neuropathy. Hope they start using it soon, to help women make more informed decisions.

Also wondering how many of you had chemo first? My MO was in a great hurry for me to start chemo, but I had to have surgery first.

 My MO called my cancer a new primary, as it was now TN. My BS said they could never know for sure, because ER+ - could change into ER- .  Don't you hate it when two doctors, give you conflicting info!

Wishing everyone great scans and fast test results!

MBJ

OBXK:  I had chemo first and so far, it's worked brilliantly, but I didn't have a choice

Rella:  CONGRATULATIONS ON THE GREAT NEWS!!!!

Suze:  We are all here hoping the best with your treatment plan.  Hugs!!

Luah:  My dr. did an US on my thyroid, that's it.  Not sure what a Cat scan can pick up.  I do agree with Suze, soft is good, hard grainy pebble like lumps, not so good.  Hugs!!

blondelawyer

I took a nap yesterday and slept through my scan!  Oops..I blamed it on the chemo  It was rescheduled for Thursday.  So I have the breast MRI today and then the brain on Thursday.  I am really tired and just feel like I can't get good sleep.  I'm sure that it is the steroids, but still very annoying!

NavyMom

Rella-Great news.  I have been lurking hoping that you would post soon.

  Hello to everyone here.  I read daily but don't post too much or too often.  Trying to keep up with new people having surgery and starting/finishing tx.  Hoping and praying for all of us.

Navy

blondelawyer

Just talked to the oncology nurse and got the go ahead for Hawaii  So, talking to my friend to figure out plans, etc.  Yay!  I'll be there as an "assistant" for a wedding and a couple of photo shoots (he's a professional photographer), but we'll still have time to explore and relax.  It will be sad to go without my husband, but it will be fun to explore some place new and not have to do it alone (I went to Mexico alone for Christmas this year--it was okay, but I was alone).

MBJ

Blondelawyer:  Yay for Hawaii!!!

Luah

blondelawyer - sounds great - it will help take your mind off things. When I was in St. Lucia last month, I did not think about cancer AT ALL!!

Suze and MBJ: Thanks, I would not describe the nodes as hard, no; not mushy, but flexible, moveable it seems. The left lump is right on my carotid (at the pulse point) - so now I'm wondering if it could be aneurysm, but that wouldn't explain the other on the right under my jaw. Trying to put it out of my head for now. haha.   

rella40

Thanks everyone for all your wonderful words. I have been resting, and just sent DS to store with a moderate list and 2 stores, it's nice to have help.  Suze, I think I get the same "let down" as you, not always with a headache, but I am so drained from all the stress over the last 6 wks that now I am just wiped out.  Yesterday was also day 7 of Xeloda, how are you doing so far?  I do 7 days on 7 days off, this was round 3. So far, fatigue has been my worst enemy. I drink lots of water, and I haven't had any hand problems, just a little with my feet.  Feeling a lot better/comfortable with the Xeloda now, now that it has proven itself 

Blondelawyer-I am so happy you get to go on that trip! Enjoy every minute.....stick your toes in the sand for all of us, will you? 

OBXK-glad you are feeling a little better.  Some of the drugs like Abraxane, usually do not cause permanent neuropothy. I had this drug, made me feel like my socks were bunched up under my toes all the time, but I left that drug six mo ago and that feeling is almost gone.  Hope you have the same results.  And BTW I did not have chemo first, surgery, then BMX. No rads.

rella40

Oh, and Luah, I hope this helps....way back when I had my first biopsy, 2 days after I felt another"lump" on the side of my breast.  I had had a SNB.  Freaked me out.  They had me come in and did US, and it was a swollen lymph node irritated by the surgery.  So I am just saying, maybe it is inflamed from something.   

OBXK

Thanks Rella and MBJ

Blondelawyer - YEAH for HI - you have to send in loads of pics, so that we can be there too. I hope you have a wonderful time.

Titan

Rella..sound happy to hear your good news!!!!

Blondelawyer..have FUN in Hawaii..glad you got the OK from your doc..but seriously, going on any type of vacation to the sun/beach has to be good for us TN'S..remember to sit outside 80% naked for 20 minutes per day..ha ha..gotta keep up that Vit D level.

Suze..a co-worker of mine had Xeloda for colon cancer..this is a pill you take..right?  She did just fine with it..I remember her saying that you have to make sure you eat b-4 you take the pill. I can ask here exactly what she ate if you would like me to.

Suze35

Titan, that would be great thank you. I'm trying to keep on my healthy diet, so any suggestions would be great.



Still have this awful migraine. Fingers crossed it breaks tonight.

Lovelyface

Blondelawyer - Yah!!!! Can you take me with you to Hawaii?  Have fun!  Oh!  all those beautiful flowers, the clear waters, the smells!! Enjoy!

Hope your Breast MRI goes well.  When do you get the results? I am getting unilateral breast MRI tomorrow.  I just have no idea how I will hear the results, I swear I have no guts.  I am so nervous that my negative thinking can probably make my results negative.  I just don't know how to stop stressing since the subject matter is so serious.

I am scheduling my petscan tomorrow, maybe for early Monday or Tuesday.  It will be so weird if the results came out on July 20 (that will be so freaky, as I got my diagnosis of BC on July 20, 2010).  Maybe I should think of doing it later and get the results a day or two later.  I don't think July 20 is a lucky date for me to hear petscan results. How do you all get your results?  Do you have your doctor call you and if so, how do you hear the results?  I can probably get a heart attack, I swear I just don't know how to hear it?  What should I do?  Is there any easier way to do this, maybe have family present when they call which may not work, as the doctor calls whenever he has time.

Lynn18

Lovelyface:  I can relate, I have a breast MRI scheduled for next month and I am already worried about  it. . .I think it is helpful if you can have someone with you when you get the results, but like you said, it is hard when we don't know when the doctor will call.  Is it possible for you to get the results right after your scan?  It seems like some people are able to do that.   Hope all your scans go well and that you get reassuring news.

Paintingmywaythru

Suze 35..I too have migranes or headaches and have had one sicne last Firday after my first chemo...nothing worked and I think it added to my nausea...but the worst has been the joint pains/stabbing shooting bone pain. jaw pain and neck pain. I got myself a whopping cae of thrush...so bad I cna only drink small amounts of super cold liquids and they don't taste great. Lost 6 pounds in 2 days. Called the onc a day early Rgarding not Improving and she put me on diflucan...don't have improvement as yet, but I feel less tense, my headache has finally gone, as did the hot humid weather...it is raining now...and I woke about 2:45Am without bone pain. I am on percset but until now it was taking the edge off, the pain still came through. I made mayself walk around the block tonight but had to hold onot my spouse. I look like a chipmonk thoguh.

Blondelawyer....of course you would want to be there with your husband..it may be bittersweet, but please enjoy yourself ot the fullest. It is your life and weddings can be fun...( loved my daughter's wedding July 2nd). So I hope you feel  well and can enjoy the  gift of being in a beautiful place.

Deeay

Hi all from Sydney, Australia! Any other Aussies out there?

Quick history about me. I was first diagnosed in April 2009 with ER+ 16mm grade 2 IDC (0/2 nodes negative) and had a lumpectomy, 4x chemo (AC) and radiotherapy x 30 incl 5x boost. Then in June this year I was diagnosed with a recurrence or new Primary (who knows???) in the same breast right near where the last tumour was! It was detcted during my annual mammogram / ultrasound.This time 2.5cm, grade 3, triple negative, Ki 67%. I had a bi lateral mastectomy even though the right breast was fine. Because of the previous radiation the sentinel node biopsy failed so my surgeon opted to leave my nodes intact. I had all the CT and PET scans to check nodes, lungs, liver, brain, bones etc and they were all clear. I feel uneasy about this decision but apparently the odds of cancer being in the nodes was less than 50% and I was told chemo should deal with any small cells not picked up on the scans.

Anyway, ten days ago I started chemo. I'll have 6 cycles of Taxotere and Carboplatin. This is every 3 weeks. Then I guess I'll go back on Arimidex for the other cancer. I'm worried about recurrence so have delayed reconstruction for now. I may also opt to have an axillary clearance too. Really hard call this one as there are pros and cons for both options. 

Really suffering from nausea and a horrible metal taste and thirst with this chemo. Anyone else have this combo? 

FrancesC

Hi Deeay - Sorry to hear of your new dx.  You seem to have made the brave decision.  This is Day 4 of my chemo (taxotere and Cyclophosphamide) and I have metallic taste too.  No appetite but forcing food down.  Drinking manuka honey water helps.  All the best with your treatments.

Paintingmywaythru

Also delightwater.com makes a water that does not taste metallic- I got 3 cases...all I can really drink right now.

Paintingmywaythru

OK, now I have a fever high enough to page the oncologist...when will this stop!!!!!...had chemo last Friday.

Suze35

Painting - ugh!! on the fever!  I hope all is okay with you...don't hesitate to go to the ER if you need to, a fever on chemo isn't something to mess with.  Keep us posted!

Deeay - welcome, though I am sorry you are here.  I did Taxol (later generation of Taxotere) and Carbo and didn't have much nausea, but everyone is different when it comes to these drugs.  I did weekly, which was a little easier on the system.  I mostly had fatigue and general feeling like crap, especially by the end.  For the metallic taste, I found I could really only drink unflavored seltzer water (very cold) and watered down chocolate protein drinks (very cold).  But that is a good chemo combo you are on, and is showing a lot of promise for TNs, so I wish you great luck with it!!

Babs - have a WONDERFUL vacation in Florida!  I know you are leaving Saturday, enjoy the time with your family and I hope your DH catches LOTS of fish!!

~~~

Headache broke last night for the most part, just have a lingering "hangover" effect.  But I'm feeling a little nauseas from the Xeloda, and do have an odd taste in my mouth.  Oh well, only 6 months to go .

Babs37

Thank-you Susan. We sure will. We are leaving for sunny Daytona beach for a 2 weeks vacation. While we are there we will visit Silver Springs park in Ocala. My little boys want to see the big crocs, so that should be fun too. I will have my laptop with me so I can keep up with what will be going on with all of you guys. I hope you can finally have this headache gone and feel better soon. Man, the things we have to endure in life. Like if chemo wasn't enough................Big hugs.

I am happy for all of you that got good news and thinking of all of you going through chemo and it's SE. And to those having "scares" these days, I am sooo with you guys. Whishing you all the best. Big hugs too.

To everyone going on vacation, like blondelawyer: HAVE FUN!

Have a great one everybody. I'm going back to packing.  XX

OBXK

Deeay - So sorry you have to do this again. Not fair!!! I too had ER positive, return as TN, after having a lumpectomy, chemo and rads. In Jan. I had a dbl mx and they took the nodes, one was positive, they also found a positive node on my good side. Just finished chemo - taxotere/cytoxin.



I hope you get through, with as few side effects as possible!



Good scan result wishes to the waiting.

Teka

Hi,

Today, husband and I returned home from "Prince Edward Island in Canada", and were so pleased to have visited the Gardens of Hope along the River Clyde in the heart of New Glasgow.   One of the main goals is to be the setting for a free respite cottage for individuals and families dealing with terminal illness.  I was taken back by so many young adults (20's) volunteering in the daily garden work.   We still didn't see a moose in NY, VT, NH, ME, or Canada.     

brca1babe

for those of you TNs that ended up in menopause due to chemo or otherwise, what recs have you had about taking homorne replacement?

I had been taking estrogen after ooph (due to being BRCA1+) and a study showed low dose replacement was associated with actually less breast cancer in follow up.  Well, so much for studies... I got TN...though who knows if it is related.

My MO says estrogen may indirectly promote TN cancer and that's one of the reasons for the obesity-TN link and suggests I go off estrogen, but I really have problems sleeping off it.

thoughts?

Luah

Teka: That sounds like a great trip, moose or not!  I love Prince Edward Island and have travelled there twice when our sons were young. Were you there when Will and Kate were there?

katfinn

Ladies, I'm supoosed to start my radiation on August 1st but I'm having 2nd thoughts now and wondering if I should go back and have a BMX as a preventivtive measure against this disease.  I talked to somone on the phone last night who had her 6 year old TNBC return.  I only had a lumpectomy (Stage 1) and T/C chemo and my docs don't think I need the BMX but I want to get a second opinion now from a major cancer center. 

I have sisters in Philly and Boston.  Can anyone give me the name of a good TN onc from one of the hospitals in this area? 

Ugh!  I thought I had made up my mind but I don't want to have any regrets down the road.  Help!

Kymn

Teka sorry you didnt get to see a moose, I have one in my freezer lmao, my DH is a hunter and he shot one last year BIG animal barely had room for the deer and elk after that. You need to come to my end of the country In Alberta and BC there are moose everywhere, can be quite a pain as the stroll across the highway like they own it and let me tell you if you a hit a moose chances are you are not going to win.

Have a had a couple of rough days, felt like my blood had been replaced with lead and could barley get my butt from the bed to the couch. I am 15 PFC and really thought I would be feeling stronger by now but this last one is really lingering.

Went for my CT scan and mapping for radiation yesterday so I am all tattoo up will start in a couple of weeks and am getting 28 treatments.

Deeay I had terrible nausea during treatment and the metal taste so gross I am just getting my taste back today the tip of my tongue isnt as numb anymore. Get the Doc to keep trying different meds for you and drink tons of water am sure you know this but most women are able to find a med that works for them I am hoping you do to I know how hard it is to have to fight it day after day.

Well ladies hope you all have a wonderful weekend with few SE and Fewer thoughts of cancer.

Hugs Kymn

Teka

Luah, ( No ) but what a stunning couple!

Kymn, I bet moose taste good!

I am dizzy from reading so MANY posts.