Calling all TNs
Comments
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Blondelawyer: Yay for Hawaii!!!
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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.
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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.
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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.
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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.
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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.
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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.0 -
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.
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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.
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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.
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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?
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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.
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Also delightwater.com makes a water that does not taste metallic- I got 3 cases...all I can really drink right now.
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OK, now I have a fever high enough to page the oncologist...when will this stop!!!!!...had chemo last Friday.
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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
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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
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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.0 -
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?
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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?
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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!
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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
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Katfinn: I was considering that option too; had a good discussion with my BS about it. Are you BRCA +?
Regarding surgery for TNs, there is some good information from experts right on this site. http://www.breastcancer.org/symptoms/diagnosis/ask_expert/2008_07/#q20
To be honest, I have always been more concerned about distant recurrence, which TN is more prone to than local recurrence, and surgery doesn't change that risk. But that's just me.
Hope you get some good information so you can decide and feel good about it.
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katfinn: It's always good to get a second opinion. One option for you if you do radiation would be to be closely monitored with mammograms and MRIs twice a year. Your doctors may be planning to do that anyway. The link that Luah provided has really good information. Personally, I don't think I would have a BMX for early stage TN, but it really depends on so many things, like BRCA status, family history, your personal comfort level. Good luck!
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Thanks for the link, Luah. I liked this part:
"Simply to call a cancer a triple-negative breast cancer to a certain extent points to some of the problem that we are dealing with. Imagine walking down the street, seeing a red-headed woman and turning to the person you are walking with and saying, "There is a non-blonde non-brunette who doesn't have a beard!"
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Have I ever said I adore my mo? He is so wonderful, he came into the hospital today and we had a little chat. He was warning me of the after treatment blues, but said we are doing everything possible to make sure this does not come back. I know there are no gaurantees, but it is nice to know that we are trying everything! It's like he answers my concerns before I ask. He has been doing this a long time and I am sure he is well aware of how us patients feel. He lost his first wife to ovarian cancer in the eighties and I think that is why he fights so hard for his patients. Sad thing is he is going to retire soon:( After all, he is in his seventies-he deserves to go travel or do what ever his heart desires, although I think treating patients is his passion or else he would aready be retired! Sometimes I can not believe how much knowledge he has, from experience and he keeps up on all the new protocols and studies.
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bkj - I adore my MO also, it is wonderful you have someone you can really trust. he sounds like a great doctor, keeping up with new things, that is awesome.
Saw my MO today for my continuing headache. She ran me through some simple tests to rule out the really bad things, and thinks it is either a bad migraine, or side effect from Xeloda. Said the Avastin wouldnt hit this hard this quick. So she called a neurologist and got some recommendations for meds, and I am stopping Xeloda for the weekend. So far the Imitrex is working ok, I have something else to try, starts with an F... anyway, hopefully I'll continue to improve.
New worry - very sore spot over my scapula. Just inside the radiation field, so MO thinks it's related, could even be a fracture. Great. If it persists, x-ray in a week or so. Of course, I think mets. Sigh.
Have a great night everyone. I'm really fuzzy, so not great at the moment responding to all.0 -
Kymn..lmao..picturing a moose in your freezer....and you will start feeling better soon...give it a little time...chemo stays in your body for a long time after you are done...I'm almost 2 years out from the end of chemo and it's really just now that I feel like I'm getting back to the person I was b-4...it does get better every day..you will notice the changes. I no longer leave the house in the morning and have to turn around to come back home to see if I turned off the coffee pot, hair straightner, put the garage door down..oh..and to make sure if I have the same shoes on instead of two different ones...
Hope your headache eases soon Suze...
Have I said "Cancer Sucks" lately?
On a side note...I ordered the alcohol today for my DD's wedding..I think that was the most fun of all the planning so far..
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Suze53, with my last cancer I had rads on the right side and I had horrible rib pain within the field, it wasn't mets and was rads related, hope yours is rads related also. I mean it hurt! If I laughed too hard I would also get muscle spasms in that same area. Unfortunately the pain did last awhile and I constantly worried about it!
Titan, glad you are starting to feel more like yourself! It takes awhile, either we get used to our new normal or are fortunate enough to get back to our old normal!
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Hi everyone - I've been stalking silently for a few weeks now - just trying to acclimate myself to this whole TNBC thing... I've learned so much just from perusing the forums here but wow, sometimes all the shortcuts can throw a newbie for a serious loop!!
So...history? I've been extremely healthy pretty much my entire life [I'm 57]. Had a surreal car accident on Feb 1st [T-boned - fractured pelvis] that hospitalized me for a month/laid up for 2 1/2 months. In that time, I noticed a painful lump on LB along w/bruising on left side - nurses reassured me that it was "just" trauma from the car-door caving in on me! Long story short - didn't go away. TN Grade 2 Stage 3, 4 nodes all clear. *shudder* ................yeah. Still waiting to wake up from this endless nightmare.
Glass half-full? I continue to be Very healthy/Very positive & dammit, I'm determined to Stay that way. Soaking up all this good info/wisdom like a sponge is going to go a long way in helping me hold onto that focus, I can tell already!!
I'm sure there'll be a jillion questions for you all [if i can just remember the damn things - can't even blame chemo yet as it hasn't started!] My onc says the drugs will have to wait til the lumpectomy is completely healed - it's been over a month & the seroma is still draining. [YUCK]
Anyways, this is me in a nutshell, i guess. Nice to meetcha!! Looking forward to getting to know you wonderful strong women in the coming months. Kicking cancer's Ass & taking names?? Oh Yeah!!!
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Hi roxessence - sorry to hear of your accident and dx. Welcome to this wonderful forum where we can share experience and information and learn to deal with each of our very own fight better. Hang in there! we will beat the crap out of C.
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