Calling all TNs

1…803804806808809…1198

Comments

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Tina - Will be thinking of you all day on Wednesday.  Post as soon as you know what is going on (unless you are too hung over from the medication). 

    Fighter - That is terrific news!  So so so pleased to hear this.  What chemo regimen did you have this time around?

    · Share on FacebookShare on Twitter
  • TifJ
    TifJ Member Posts: 1,568
    edited March 2014

    Fighter- so happy chemo has been easier! We will be anxiously waiting to hear of your NED scan results!!!!

    Thinking of you Cat.

    · Share on FacebookShare on Twitter
  • gillyone
    gillyone Member Posts: 1,727
    edited March 2014

    Fighter - so glad things are going well. Sleepy? Get as much rest as you need. Your body's been through a lot.

    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited March 2014

    thanks for updating us Fighter! I'm glad things were easier for you, now rest and take care of yourself. Lots of positive thoughts and hugs

    · Share on FacebookShare on Twitter
  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    Fighter, I'm delighted this round wasn't too difficult.  Thanks for letting us know how it's going.

    Cat, we are all in your pocket.  Glad to hear you are getting what nurses call Milk of Amnesia!  I had it when they put in my port and don't remember a thing.  It works.

    I'm about 4 weeks post surgery now and going for my first PT appointment tomorrow.  I'm looking forward to it.  I think I have some cording from my ALND.  I have my first appointment with my local RO on Thursday.  Not looking forward to rads, but I know I need to do it.

    · Share on FacebookShare on Twitter
  • Titan
    Titan Member Posts: 2,956
    edited March 2014

    Thanks for stopping in Fighter...!

    Cat...I'm in your pocket too!

    Welcome Princess....sucks to be here but it does help to be with your "own"..

    · Share on FacebookShare on Twitter
  • journey4life
    journey4life Member Posts: 517
    edited March 2014

    Great news Fighter! Get plenty of rest and take good care of you.

    Simple - I also had PT for cording from ALND and also had PT for lymphedema. It worked wonders! Good luck.

    Cocker - you okay? 

    Kathy - I hope you're at a casino in an exotic place, winning tons of money and flirting with Paco the bartender or Juan the cabana guy...Check in when you're able. Hope mom is okay...

    Thinking of you all, Lisa 

    · Share on FacebookShare on Twitter
  • Teka
    Teka Member Posts: 10,052
    edited March 2014

    Bluebird144, public post the following on the *INSOMNIACS place to talk in the wee hours* thread.

    An hour ago Bluebird144 wrote:

    Prayers needed please. I'm in hospital waiting for surgery time
    to remove mass in brain. I'm so afraid. This came out of left field. All
    my path reports and checkup s were good after surgery last July. Just
    finished rads in December and everything was going well. So upset. Love
    you guys.

    · Share on FacebookShare on Twitter
  • adagio
    adagio Member Posts: 982
    edited March 2014

    praying for bluebird right now.  

    · Share on FacebookShare on Twitter
  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2014

    Hi ladies.

    Cat - now cats. Every Saturday my daughter and I take my little granddaughter and my little grandson up to the RSPCA.  We don't feed the animals they have the people who work there to do that but we cuddle and stroke and brush all the cats and kittens.  It's a good thing for my grandchildren to do because it teaches them to be kind and loving to animals and it's good for me and my daughter because we get to cuddle the older ones  that seem to be left there longer  because they are older.  They are all so gorgeous and the kids have a great time with the kittens. We go on a roster with others and spend about 1½ hours there. We just love going.     

    Will be thinking of you having your treatment but no way will we be left in the waiting room, we'll be right by your side.  

    Curly - great news about the BRAC.  Very happy for you and your cousins.

    Lookingforw - so glad you are looking forward!! and filling up your day and keeping those cancer 'what ifs' away.   Hope you enjoy your Cancer Survivors lunch.  Just love that word 'survivor'.

    Adagio - so sorry to hear about your falls.  Hope you are feeling better by now.  Tax files, I can certainly relate to that.  We have heaps of boxes of them from the business.  You will find them everywhere in boxes, in cupboards and in the garage.  Pesky things.

    Fighter - wonderful, wonderful news.  NED, way to go girl. Glad treatment is easier on you this time. So glad you didn't lose that wonderful hair.

    Simple - I still have a cord but I don't do a many exercises as I should do.  The day just fills up with things to do and I forget my arm exercises.

    Journey - I am fine girl.   Had a bit of a tummy upset this week (so you can imagine where my mind went).  Hope you are keeping well too.

    Now Katherine,  yep time she posted cause I need to know how my mum is.  Your right,  bet she is flirting!!.   

    Tekia - sending a multitude of prayers and big hugs to Bluebird and will keep hoping for the best for her.

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    I don't know if you all saw the post from Bluebird, she had e-mailed me but it looks like she did post something publicly.  She had headaches and vomiting for about a week, and now she is in the hospital waiting for surgery - they found a mass on her brain.  Please everyone keep her in your thoughts.  She is relatively new to our boards.  

    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited March 2014

    Bluebird, thinking of you with positive thoughts and prayers, in your pocket!

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited March 2014

    Hi Tif !!!

    Hello to all of you  wonderful ladies, and guy!

    Cat-my node under my breastbone did turn out to be cancer, that is why some of the docs staged me as stage 4. It terrified me and still does. I guess I had about 5 nodes in the internal mammary/mediastinal area that were positive, and one report said that 2 of the nodes were connected by the cancer and amounted to a total of 5 cm! I don't talk about it much because it scared me so much. I had 6 rounds of ac, followed by 12 weekly abraxane with avastin. My doc insisted on the avastin, and I also had zometa, and have been on metformin after finishing chemo, but not during. I had scans often and by the time I finished treatment my scans were clear, I had ct, mri and pet scans regularly. Since I was basically stage 4, they did give me the option of no mastectomy and no radiation, but my main mo really recommended me to do both so I did, I couldn't live with my breasts that both had cancer. The pathology showed complete response with the tissue that they could get (couldn't get the nodes under the breast bone), so with the clean scans and good pathology reports, they said I was NED. I hope they can find a combo of drugs to put you there also, I truly believe it is possible. I believe if I had seen any other doctor, they may have not treated me so aggressively. Keep us posted on your biopsy results, still hoping for benign results.

    So, I am coming up on 3 years from diagnoses, I was diagnosed March 31, 2011. I have a follow up appointment on the 18th and am getting my port out on April 1rst. I so hope they don't find anything odd at my check ups. I will have blood work and tumor markers done. I think it is the ca27-29.

    Cat-my tumor markers were at 61 when first diagnosed, and now the lowest they have been is 28 and usually range from 28-32. Always worries me but the docs are ok with it.

    Fighter-Glad to hear from you. It would be so nice if all chemo's did not take our hair.

    Cocker-Hi! I have sad news:( Romi, my big boy in my avatar picture has cancer. He had a lump removed and she is pretty sure it is cancer, but sent it off to pathology. He is 14 years old and still acts like a puppy. While he was having surgery, my other dog, the black lab actually let my cat sleep by her. She is usually pretty grumpy and wants nothing to do with cats! So it was pretty sweet. Then when he came home I saw that the cat was laying in between the two dogs and was as happy as can be! Chickens were also hanging out by them, but not cuddling like before.

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited March 2014

    Wow I am chatty tonight! I just wanted to ask those of you that have nerve pain/numbness if they have tried Gabapentin? I started it a few weeks ago and it is really helping my neuropathy, My back doc put me on it because I have a bulging disc that is causing sciatic type pain. She wanted to calm down the nerves. I am on a very low dose and it seems to be helping my numbness to, and helps me sleep (well, not tonight).

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited March 2014

    bluebird-sending healing thoughts and prayers. Hope your surgery goes well, and that they take out a benign mass.

    · Share on FacebookShare on Twitter
  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited March 2014

    Cat, holding hands down the bumpy road.

    Thanks everyone for the positive wishes prayers and support.


    · Share on FacebookShare on Twitter
  • tekwriter
    tekwriter Member Posts: 216
    edited March 2014

    Prayers for everyone.

    · Share on FacebookShare on Twitter
  • christina1961
    christina1961 Member Posts: 736
    edited March 2014

    Cat, Thinking of you.  I'm sorry you are having to go through this.  I do know the stuff Annie is talking about is wonderful - didn't remember a thing for my colonoscopy.

    · Share on FacebookShare on Twitter
  • Leealice
    Leealice Member Posts: 87
    edited March 2014

    Cat-I'm still praying for you and I'm added Bluebird to my daily prayers. My best friend had brain surgery to remove a tumor 3 years ago and is doing great now with nothing new recurring

    · Share on FacebookShare on Twitter
  • JAN69
    JAN69 Member Posts: 947
    edited March 2014

    Bluebird...Sending warm, comforting hugs to you and your family.  Please lean on us when you need to.  Jan

    · Share on FacebookShare on Twitter
  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2014

    Bluebird - Holding your hand too.  Hope surgery goes well and we hear from you soon that they got it all.

    Bak - thanks for the info - so helpful.   I see you had hormone therapy too even though you were TN?

    Talked to my BS today about official reading of PET by a radiologist and it doesn't sound good.  A lot of spots are lighting up.  One lymph behind my clavicle, many behind my breastbone at the base of my neck, two nodules in my right lung ( 0.8 mm and 1.5 cm) and two in my left lung.   I had a clean CT scan only 8 months ago.  The BS and MO have a meeting every Wednesday with the tumor board and he said they are going to discuss my case even though the biopsy results won't be back until Friday.  It sounds like they are pretty sure its mets.

    I am starting to freak out.  I was holding it together until now but think I should start researching my options as I might have to make some decisions fairly quickly.  The biopsy results should be in by Friday, except Her2 (if it is cancer).   Anyone have any good links?  I have no knowledge about mets and never thought I would need to.  Also, any good clinical trials?   I am already on Metformin since after my chemo/rads.   My mind is flying.  I live near Atlanta.  

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    CatWhispurrer (Tina) - First off, so overwhelming to hear your update.  I will be praying for everything to work out in the best case scenario for you tomorrow.  You have my prayers.  I think you are doing everything right, getting your ducks in a row right now is an excellent idea in case you have to make decisions quickly after the biopsy results.  For dealing with so much, you are certainly so strong and being very proactive. Doing what you are doing will actually help balance the anxiety and stress of it, by remaining in control of the things you can.  

    I recommend looking at what the Preferred Treatment options are according to the NCCN guidelines.  This is the most recent version, they usually release an updated one in March. I'll continue to check and let you know if I see the newest one posted.

    With this manual, you can search through the manual for your exact scenario, and follow the links/pages/schematics to arrive at the Preferred Regimen Options page.  If you need any help with research please let me know. There are treatments pages in there for recurrence or systemic recurrence - you can see what they consider the preferred treatment. This will be good to know so as your Onc starts recommend things, you can have an idea of where they fall according to this guideline manual.

    Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer

    http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages

    What is the NCCN Guidelines Manual?

    "The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."

    xoxo

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Link to breast cancer trials site.  I believe you can select options in here and also get random updates when something matches your criteria.  But to start, you tell it what type of bc you have, so it will run a quick search and come up with a list of trials that you might be eligible for.  Then you can run through the list and see what pertains to you.  Not all trials are chemo related, some are related to depression, exercise, etc ... but it will generate the whole database of trials in progress.

    Trials Site:

    https://www.breastcancertrials.org/bct_nation/home...

    Here is another site for trials, (National Cancer Institute - Trials Site) but not sure if they have that automatic search feature based on specifics.  

    http://www.cancer.gov/clinicaltrials/results/type/...

    Also, remember the site, Ask an Expert at John Hopkins if you want to know some options for you or run a 2nd opinion past them. Many times they answer within an hour, usually less than a day or so.  If they need slides, they may ask you to send them in, but it is still a great idea to post your question there and see what response you get.  I've used them a few times.  

    Ask an Expert

    http://www.hopkinsbreastcenter.org/services/ask_ex...

    This 2nd link takes you directly to a Question and Answer page on the topic of systemic breast cancer recurrence.

    http://www.hopkinsbreastcenter.org/services/ask_ex...

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    You might scroll through to see what options were discussed -- you can look for a TNBC person or if there is a search field try searching via TNBC.

    · Share on FacebookShare on Twitter
  • LPBoston
    LPBoston Member Posts: 89
    edited March 2014

    Bluebird144 you are in my thoughts and prayers - stay strong

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Cat - I read through a lot of the posts on the John Hopkins website, and with many of the women who posted general questions about newly diagnosed with a recurrence, they are recommending a 2nd opinion with a Breast Medical Oncologist and an Academic Medical Breast Center.  They also posted their phone number in case someone wants to speak to them personally for guidance.  443-287-0592.  I forgot to mention that they will e-mail you when your question has been answered, so you will know instantly that there is info for you.

     

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited March 2014

    Cat-Thinking of you. Looks like others have given you some great info. I tried the anti hormonals as my doc wanted me to because I was 3% er positive. They were going to retest after surgery, but since there was not any tumor left (yippee!) they were not able to retest. I could not handle any of the medications, severe joint pain, hard to move for about 2-3 hours in the morning, took me a long time to be able to feel half normal. so I quit taking them. I should probably remove that from my signature. My doc also had quoted some study and I can't remember where it was from, maybe someone else knows, but it showed some improvement for triple negs on anti hormonals. He really wanted me on them, but I just couldn't do it. I do feel for the er pr positive gals that have to take it. My original mo doc retired and my new one is ok with me not being on them, but agrees with last mo that it MIGHT help. Just couldn't go through all that pain for a maybe! My original mo also wanted me on Herceptin, because he said if you had even a little, her+1 or so, it would be beneficial. Insurance wouldn't go for it. My doc was extremely aggressive, I miss him. He is in his late 70's and ran around like a 30 year old! I don't think he wanted to retire but I am sure he had some encouragement from his wife:) He still is very involved in research. I feel I owe my life to him.

    So, I got really good news today. The mass they took off of my dog that they thought for sure was cancer was not!!!!! Just some really odd benign growth that they got clean margins on! No wonder he is still running around like a puppy!

    · Share on FacebookShare on Twitter
  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2014

    Inspired - thanks for all the info to look at.  I appreciate it.   I couldn't find anything for TNBC mets treatments specifically in the guidelines.   I just went to look through the Ask an Expert (wonderful idea!) and it says to use the search tool at the top of the page, but I do not see any search tool.  Obviously, it would be daunting to try to look through the whole thing.  I guess I can just ask.   I may ask for a 2nd opinion from them or if they could recommend a place near me to get one as I do not know of any big cancer centers around me except a Cancer Treatment Center but I've never heard anything good about them.

    · Share on FacebookShare on Twitter
  • aeryno
    aeryno Member Posts: 59
    edited March 2014

    CatWhispurrer - sending good vibes to you from me and my kitty :)

    For those inquiring about neuropathy, I tried acupuncture in December (2 months PFC) and it cleared it up basically right away.  I have some weirdness in my feet in the a.m. but otherwise I'm good.

    However, my new issue is joint tightness in my hands. I'm 36 and haven't had a period since May 2013 right before chemo started. As such, chemo put me in menopause (whether it's permanent or not I don't know) but due to the lack of estrogen my fingers are tight and my left hand in particular is not able to grip as well. I'm trying shark cartilage as I hear that can help.  Anyone else experience the same issue?  Thanks :)

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Cat - for the 2nd link I sent you for John Hopkins, you can scroll down and see the words TNBC in several subject lines of various inquiries.  You can see by the subject line if the question is of interest to you.  

    After tomorrow, when you have a very specific question, submit your question and you'll get an answer.  I thought today there might have been someone who had already posted a question you might be thinking, but if you do have a specific question, you can post it and wait for a response.  As mentioned, they are extremely fast with responses.

    I'm sure your team already has a plan in their mind on what they want to do to get you into remission, if this is a recurrence.

    Many prayers are still out there praying that it's not.

    Bak - Thrilled for you on the news about your dog.

    · Share on FacebookShare on Twitter

Categories